Health'System'Performance'Measurement'in'a' Circumpolar'Context:'Selecting'Performance'Indicators'for' Maternity'Care'

' by' '

Rebecca'Rich'

A'thesis'submitted'in'conformity'with'the'requirements' for'the'degree'of'Master'of'Science' Institute'of'Health'Policy,'Management,'and'Evaluation' University'of'Toronto'

©'Copyright'by'Rebecca'Rich'2016'

Health'System'Performance'Measurement'in'a'Circumpolar' Context:'Selecting'Performance'Indicators'for'Maternity'Care'

Rebecca Rich

Master of Science

Institute of Health Policy, Management, and Evaluation University of Toronto

2016 '

Abstract'

Performance measurement is a necessary component of a transparent health system. In circumpolar regions, indicators that align with national strategies may fail to address priorities of northern, remote, or Indigenous populations. The objective of this study was to select contextually appropriate performance indicators for maternity care in circumpolar regions.

A scoping review of the academic and grey literatures generated a working list of indicators.

Fourteen circumpolar maternity care experts then participated in a two-round modified Delphi consensus process. Eleven indicators met criteria for importance, circumpolar relevance, validity, and reliability. Twenty-nine additional indicators were identified for further consideration. This study demonstrated that while most circumpolar maternity care systems engage in performance reporting, current indicators do not always reflect local priorities. This study was effective in identifying contextually appropriate indicators. Future work should ensure that circumpolar performance indicators capture issues related to social determinants of health, travel for care, and cultural competency.

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There are no technical solutions to problems of interpretation

~ Freeman 2002 (p.133)(1)

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Acknowledgments'

I would like to extend my sincerest appreciation to my supervisor, Dr. Kellie Murphy. I cannot thank you enough for your support, encouragement, and guidance. Your willingness to take on the supervision of this project is a testament to your kindness, broad research skills, open- mindedness, and commitment to resident education. You are truly a remarkable physician and role model.

I am also tremendously grateful for the guidance and support of my other committee members, Dr. Jeremy Veillard and Ms. Susan Chatwood. Jeremy, I didn’t know the first thing about performance measurement when I entered your classroom. Your guidance in developing my research ideas and acquiring the necessary background knowledge has been invaluable. Susan, this project would not have been possible without your deep and nuanced understanding of the circumpolar context, your creativity, and your extensive research network. Thank you so much for providing me with a warm, inspiring, responsive and dog-friendly home at ICHR.

I would also like to acknowledge other contributors to this project: Thomsen D’Hont for assisting with the often thankless tasks of abstract screening and data collection. Thank you for improving my skiing, introducing me to fat biking, and being all around excellent ambassador for Yellowknife. You are going to make a stellar physician. Janice Linton, thank you for sharing your knowledge of the Aboriginal health literature and for your superb searching. Be’sha Blondin, I am so honored to have been able to work with you. Mahsi for all of your time and wisdom. Finally, to the incredible clinicians, researchers and advocates who live and work in the North and were generous enough to participate in this study, I am grateful to have had a chance to work with and learn from you. Your dedication to improving the health and wellness of northerners is inspiring.

I would also like to thank Dr. Donna Steele (residency program director) and Dr. John Kingdom (department chair) from the University of Toronto Department of Obstetrics and Gynecology for their support, and the opportunity to participate in the Clinician Investigator Program.

Finally, to my family and friends, your support means the world. Hart Stadnick, I am so grateful to have you in my life. Thank you for helping to keep my ‘Amy’ in check and for helping with Appendix 6.

I would like to acknowledge the following scholarship/funding programs: The Ontario Ministry of Health – Clinician Investigator Program salary support funding; The Canadian Foundation for Women’s Health (CFWH) Dawn Walker Award; The Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Patient Engagement grant.

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Table'of'Contents'

Acknowledgments ...... iv!

Table of Contents ...... v!

List of Tables ...... ix!

List of Abbreviations ...... x!

List of Figures ...... xii!

List of Appendices ...... xiii!

Chapter 1 Background ...... 1!

1! Background ...... 1!

1.1! Introduction ...... 1!

1.2! Positioning the researcher ...... 2!

1.3! Theoretical frameworks ...... 2!

1.4! Circumpolar context ...... 3!

1.4.1! Circumpolar geography ...... 3!

1.4.2! Circumpolar peoples ...... 8!

1.4.3! Maternity care in northern Canada ...... 11!

1.5! Health system performance measurement ...... 13!

1.5.1! The purpose of measuring health system performance ...... 13!

1.5.2! Challenges and limitations of performance measurement ...... 15!

1.5.3! Performance indicator selection & development ...... 16!

1.5.4! Performance measurement frameworks ...... 18!

1.5.5! Health system performance and Indigenous peoples ...... 23!

1.6! Objectives & research questions ...... 24!

1.7! Ethics ...... 25!

1.8! Map of the thesis ...... 26!

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Chapter 2 Scoping Review ...... 27!

2! Scoping Review ...... 27!

2.1! Abstract ...... 27!

2.2! Introduction ...... 28!

2.3! Methods...... 29!

2.3.1! Setting and population ...... 29!

2.3.2! Search strategy ...... 30!

2.3.3! Article selection ...... 31!

2.3.4! Data extraction ...... 34!

2.4! Results ...... 34!

2.4.1! Included publications ...... 34!

2.4.2! Available performance measurement frameworks ...... 38!

2.4.3! Available performance indicators ...... 39!

2.5! Discussion ...... 42!

2.6! Limitations ...... 44!

2.7! Conclusion ...... 44!

Chapter 3 Delphi Consensus ...... 45!

3! Delphi consensus ...... 45!

3.1! Abstract ...... 45!

3.2! Introduction ...... 46!

3.3! Methods...... 47!

3.3.1! Study design ...... 47!

3.3.2! Participant selection ...... 48!

3.3.3! Derivation of survey items ...... 49!

3.3.4! Response scale and criteria ...... 49!

3.3.5! Survey administration ...... 50! vi

3.3.6! Data analysis ...... 51!

3.3.7! Selection of key indicators ...... 51!

3.4! Results ...... 52!

3.4.1! Achieving consensus ...... 52!

3.4.2! Selected indicators ...... 53!

3.5! Discussion ...... 55!

3.6! Limitations ...... 58!

3.7! Conclusion ...... 59!

Chapter 4 Knowledge Translation & Community Feedback ...... 60!

4! Knowledge translation & community feedback ...... 60!

4.1! Introduction ...... 60!

4.2! Approach ...... 60!

4.2.1! Incorporating Indigenous knowledge ...... 60!

4.2.2! Workshop participants & activities ...... 61!

4.3! Findings ...... 62!

Chapter 5 General Discussion ...... 64!

5! General discussion ...... 64!

5.1! Existing performance indicators ...... 64!

5.2! Selected performance indicators ...... 65!

5.2.1! Core indicators ...... 65!

5.2.2! Additional indicators ...... 65!

5.2.3! Indicator redundancy ...... 66!

5.3! Key priorities ...... 67!

5.4! A case study – applying the findings to the NWT ...... 69!

5.5! Implications, opportunities, & obligations ...... 72!

5.5.1! Information needs ...... 72! vii

5.5.2! Roles of different actors ...... 76!

Chapter 6 Conclusions ...... 80!

6! Conclusions ...... 80!

Chapter 7 Future Directions ...... 81!

7! Future directions ...... 81!

7.1! Further stakeholder input ...... 81!

7.2! Feasibility assessment ...... 83!

References ...... 84!

Appendices ...... 96!

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List'of'Tables''

Table 1 Scoping Review: Included Studies

Table 2 Available Indicators

Table 3 Level of Agreement Among Delphi Participants

Table 4 Selected “Core” Performance Indicators

Table 5 Selected “Additional” Performance Indicators

Table 6 CIHI Maternity Care Indicators

Table 7 Potential Data Sources for Selected Indicators in Canada

Table 8 Stakeholder Opportunities and Responsibilities

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List'of'Abbreviations'

SOGC Society of Obstetricians and Gynaecologists of Canada

IHS Indian Health Service

NGO non-governmental organization

UN United Nations

WHO World Health Organization

CIHI Canadian Institute for Health Information

OECD Organization for Economic Cooperation and Development

HCQI Health Care Quality Indicators

HPF health performance framework

High North RD High North research documents

MCH maternal and child health

PHAC Public Health Agency of Canada

CDC Centers for Disease Control

AMCHP Association of Maternal & Child Health Programs

FNRHS First Nations Regional Health Survey

BMI body mass index

LBW low birth weight

VBAC vaginal birth after caesarean

C/S Caesarean section

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NICU neonatal intensive care unit

KPI key performance indicator

SD standard deviation

SES socioeconomic status

GA gestational age

PRO Patient reported outcome

MES Maternity Experiences Survey

EMR electronic medical record

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List'of'Figures''

Figure 1 Circumpolar Country and Regions

Figure 2 Language Families of Indigenous Arctic peoples

Figure 3 WHO Health System Functions and Objectives

Figure 4 Revised OECD Frameworks for Performance Measurement

Figure 5 CIHI’s Health System Performance Measurement Framework

Figure 6 Aboriginal and Torres Strait Islander Health Performance Framework (HPF) Performance Measures

Figure 7 Project Map

Figure 8 Adapted PRISMA Diagram

Figure 9 Distributions of Indicators by Domain

Figure 10 Delphi Panel Participants

Figure 11 Connecting Themes at all Stages

Figure 12 Explanatory Mixed-Methods Design with Incorporation of Indigenous Knowledge

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List'of'Appendices''

Appendix 1 Scoping review key words

Appendix 2 Scoping review article selection form

Appendix 3 Scoping review data extraction form

Appendix 4 Indicator information package

Appendix 5 Round 2 questionnaire

Appendix 6 Mean indicator scores (Round 2)

Appendix 7 Workshop agenda

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Chapter'1'' Background' 1' Background' 1.1' Introduction'

Multiple studies have demonstrated the enormous health disparities that exist between Indigenous Canadians and the general Canadian population (2-4). Along with many other health indicators, those that reflect Indigenous maternal and child health lag behind the rest of the country. While these health inequities affect people in urban, rural, and remote regions, the remote regions in northern Canada are affected by an additional and unique set of challenges. Arctic regions are characterized by vast distances, harsh winter climates, and limited human resources which collectively present significant barriers for the delivery of timely, efficient and high quality medical care. In addition, the medicalization of birth and centralization of maternity services have resulted in a decline in locally available care and traditional birthing practices.

These changes have had a tremendous effect on women, families and communities. In response, a small number of community-based programs, driven largely by Indigenous midwives, have been developed. These programs have been supported by the Society of Obstetricians and Gynecologists of Canada (SOGC) with the release of a policy statement encouraging the return of low risk births to rural and remote communities (5). While individual community programs have measured critical elements such as safety and community acceptability (6-8), there are no existing measurement systems to allow for inter-regional, or international comparisons of these initiatives or for assessment the maternity care system as a whole as it performs in this unique context.

Maternity care in rural and remote regions of Canada is not unique. Other northern regions of the world share similar challenges and thus may serve as useful partners in health system evaluation and improvement. This project utilizes this shared experience by examining health system performance measurement from a circumpolar perspective.

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1.2' Positioning'the'researcher'

The exercise of identifying and describing one’s research lens has traditionally been limited to qualitative researchers. It is an exercise through which researchers identify their own social position, epistemology (theory of knowledge or way of knowing), axiology (value system), and ontology (the way in which one conceptualizes reality) and how these factors inform their choice of theoretical frameworks and research methodologies. Anderson and Walter point out that, through the absence of this practice, quantitative social research methodology fails “to recognize its own culturally and racially situated origins and, more particularly, its contemporary dominant cultural and racial parameters”(p. 42) (9). Quantitative health research, and to some degree qualitative research as applied to health care questions, demonstrates a similar absence of attention to the researcher’s standpoint.

The circumpolar focus of this project as well as its necessary attention to the health priorities and outcomes of Indigenous peoples places my social position outside of the research context. As an individual of Euro-colonizer origin from southern Canada I am acutely aware of my identity and my lived experience in conducting this research. I draw attention to this because the process of identifying my theoretical perspectives and further understanding my role as an ally in Indigenous health research has been and continues to be a vitally important process. Furthermore, this standpoint and the theoretical perspectives through which I see the world cannot reasonably be extracted from the way I choose to operate as a clinician, advocate and researcher.

1.3' Theoretical'frameworks'

The etiology of the health inequities faced by Indigenous women is multifactorial and undeniably complex. However, an essential consideration is the history of colonialism and the present and ongoing systematic discrimination that is faced by Indigenous people in Canada and around the world. It is thus appropriate to approach this research project from a post-colonial perspective. Recognizing that the term-post colonial has itself come under scrutiny for its implication that the phenomenon of colonialism exists exclusively in the past (10), post-colonial theory provides a vocabulary and framework for understanding how historical power-relations and constructions of culture, race, and otherness have influenced and continue to influence the

3 lives and health of Indigenous people (11). Browne et al, discuss four ways in which a post- colonial theoretical framework can provide direction for conducting research with Indigenous communities (12). In addition to understanding how history has shaped the present context of health and health care, they discuss how post-colonial theories address the issue of partnership in research, provide an emphasis on redressing inequities, and highlight the potential of research to perpetuate an unequal power dynamic. The role of post-colonial theory is thus central to both the research topic in this project as well as the researcher’s epistemological approach to knowledge production.

1.4' Circumpolar'context'

1.4.1' Circumpolar'geography'

Geographically, the circumpolar North refers to those regions that exist in close proximity to the North Pole. The precise boarders that delineate circumpolar territories, however, are not clearly defined. Geographical boundaries such as the Arctic Circle (66°N), the line of continuous permafrost, and the 10°C July isotherm have been suggested. For the purposes of studying human health and health systems, we will rely on geopolitical rather than on physical boundaries, as has been suggested by other authors (13). The circumpolar North thus includes the whole of Greenland, Iceland, and the Faroe Islands as well as the northern most territories of Norway, Sweden, Finland, Russia, the United States of America (Alaska) and Canada (Yukon Territory, Northwest Territories, Nunavut). The Inuit territories in Labrador (Nunatsiavut) and northern Quebec (Nunavik) are also sometimes considered in the circumpolar context. These circumpolar regions can be identified in Figure 1.

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Figure 1. Circumpolar Countries and Regions (14)

1.4.1.1' Greenland'

Greenland (or Kalaallit Nunaat, “the Greenlanders’ Land”) is the largest island in the world, the central portion of which is covered by an ice cap. The small population (56 000 in 2014) resides primarily in costal towns and communities, with the largest population concentrated around the south and west coasts (15). Greenland is a former colony of Denmark but has had home rule since 1979 and the right to self-governance since 2009. Greenlandic has been the primary official language since 2009. The health care system is largely founded on a Danish model and is publically funded with an emphasis on universality. Nursing education has been available in Greenland since 1993 and has helped to increase the proportion of Greenlandic nurses (16). Recent health care reform has also increased the scope of practice for nurses who play a vital role in primary health care delivery in remote areas (17). Despite these advances, access to

5 specialized care and retention of skilled providers in remote communities remain important challenges (16, 18).

1.4.1.2' Iceland'&'The'Faroe'Islands'

Iceland is a small Nordic country in the north Atlantic. It has a population of 327 600 (19), an area of 103 km2, and a temperate maritime climate. The population is largely of Nordic and Gaelic origin. Iceland’s health care system resembles systems in other Nordic countries that are publically funded and integrated.

The Faroe Islands are made up of an archipelago covering approximately 1400 km2 in the North Atlantic (20). The Islands comprise an autonomous region within the Kingdom of Denmark. Danish and Faroese, a Germanic language with many similarities to Icelandic, are official languages. The national health system provides general and specialized medical treatment through a National Health Insurance program (21).

1.4.1.3' Fennoscandia'

Norway, Sweden, and Finland form a contiguous land base in northern Europe. This region is bordered by the Norwegian Sea to the west, the Barents Sea (Arctic Ocean) to the north, the North and Baltic Seas to the south, and the Russian border to the east. The term Scandinavia is sometimes used to refer to the Scandinavian Peninsula (the geographic region consisting of Norway, Sweden, northern Finland, and northwestern Russia) but may also refer to the cultural region that includes Norway, Sweden and Denmark. Finland, Iceland and the Faroe Islands are also sometimes included in the latter distinction. In this thesis, the circumpolar region including the northern counties of Norway (Nordland, Troms, and Finnmark), Sweden (Norrbotten and Västerbotten), and Finland (Lapland) will be collectively referred to as northern Fennoscandia. Karelia and the Kola Peninsula, while geographically contiguous with Finland will be discussed with Artic Russia.

Northern Fennoscandia is made up of a wide variety of landscapes including islands and fjords along the Norwegian Atlantic coast, alpine mountain ranges and coniferous forests. The climate is generally more moderate than other regions at the same latitude but the region still experiences the coldest temperatures recorded in Europe (13). This region (including the tip of the Kola peninsula) also roughly corresponds to the traditional homeland of the Saami people, although

6 the proportion of Indigenous peoples residing in this region is much smaller than it is in some other circumpolar regions (14).

The Norwegian, Swedish and Finnish health systems are all universal, predominantly publically funded systems (22). Like other circumpolar health systems, retention of qualified staff in remote and northern regions is a common problem. Socioeconomic and health indicators are often better in northern Fennoscandia than in other circumpolar regions and disparities between northern and southern regions are less significant. However, routine identification of Saami people in reporting of these indicators is limited.

1.4.1.4' Northern'Russia'

Arctic Russia stretches from the Kola Peninsula in the west, across Arctic lowlands to the eastern highlands of Chukotka and Kolyma. The Ural Mountains span a 2000 km distance from North to South and divide Europe and Asia. Siberia is the geographical term that is typically used to refer to the Russian regions east of the Ural Mountains. Administratively, the Russian North is comprised of a complex hierarchy of administrative units that roughly correspond to Indigenous territories (23).

1.4.1.5' Alaska'

Alaska is the only circumpolar region of the United States of America and is geographically separate from the lower forty-eight contiguous states. The whole of Alaska’s 1.52 million km2 can be considered circumpolar. It includes the south-eastern mountainous archipelago commonly referred to as the Alaskan ‘panhandle’, the Aleutian Islands, as well as diverse mainland environments ranging from coastal rainforest to Arctic Tundra (13). The population of Alaska is 710 231 (24). Over a third of the population resides in Anchorage and approximately 15% of the population identifies as American Indian or Alaska Native. Alaska is the only circumpolar region where health care is not delivered by a predominantly publicly funded model. However, for beneficiaries of the Alaska Native Claims Settlement Agreement of 1971, health care is provided through the Alaska Native Tribal health system. This system consists of regional health corporations coordinated through the Alaska Native Tribal Health Consortium and receives funding from the Indian Health Service (IHS), an agency of the Public Health Service.

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1.4.1.6' Northern'Canada'

In northern Canada, the circumpolar regions include the Yukon Territory, the Northwest Territories, and Nunavut. As mentioned earlier, the Inuit territories in Labrador (Nunatsiavut) and northern Quebec (Nunavik) are also sometimes included in this designation. All three circumpolar territories have a significant proportion of Indigenous inhabitants ranging from 25% in the Yukon to over 80% in Nunavut. The Yukon Territory is the smallest of the three territories with a land mass of 482 443 km2 and a population of 37 400 (25). Over 70% of the Yukon’s population resides in the capital city of Whitehorse. The Yukon Territory is bordered by Alaska to the west, British Columbia to the south, the Beaufort Sea to the North and the Selwyn and Mackenzie mountains, which run along the Northwest Territories-Yukon boarder, to the west. The Northwest Territories lies to the east of the Yukon Territory and spans 1 346 106 km2 of diverse physical geography including the Mackenzie Mountains, Arctic Tundra, and a large expanse of Canadian shield (13). The population of the Northwest Territories is approximately 44 000, nearly half of which resides in the capital city of Yellowknife (25). Nunavut (“our land”), which was established as a Territory in 1999, is the largest and eastern most territory in the Canadian Arctic covering an area greater than 2.1 million km2 (26). Its physical geography is characterized by Arctic Tundra and its small population (31 000) is over 80% Inuit (25). There are no roads connecting Nunavut’s 25 communities and thus almost all residents and supplies must be transported to and from the south by air.

The responsibilities the three territorial governments are limited to those assigned to them by the federal government. In recent years, devolution agreements between the federal and territorial governments have increased the breadth of these responsibilities. However, due to their small tax bases, a significant portion of their operating budgets are still derived from federal transfers (13, 26). In Nunavut, the territorial government is primarily Inuit-led but, as a territory within the nation of Canada, it is does not have the same level of autonomy as and self-governance as the Greenlandic people have established under Home Rule (27). Health care in the territories follows the broader Canadian universal model. It is federally funded but delivered by provinces. Territorial capital cities act as referral centers for more remote communities where the retention of adequate numbers of skilled staff is a challenge (26). Tertiary level care is available only via evacuation to southern centers.

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While the landscapes, peoples, and geopolitics of these international circumpolar regions vary substantially, it is clear that they share challenges associated with harsh winter climates, low population densities, and limited human resources. In health care this corresponds to an increased reliance on community health workers and nurses, the frequent need to travel for health care, and challenges associated with recruiting and retaining skilled providers in remote regions. These regions also share common experiences of industrialization including the emergence and growth natural resource based economies, and they are similarly vulnerable to the effects of pollution and climate change. Cross cutting these shared experiences are histories of colonialism, and more recently efforts directed at reconciliation and the advancement of political power and self-determination for Indigenous peoples (28).

1.4.2' Circumpolar'peoples'

Circumpolar regions are populated by a diverse composite of both Indigenous and non- Indigenous peoples. The proportion of Indigenous peoples in each of the circumpolar regions varies significantly from >90% in Greenland to <1% in Iceland and the Faroe Islands. The Inuit, Dene, Métis, and Saami peoples are four of the most populous Indigenous peoples in circumpolar countries and are discussed briefly in this section. The traditional territories of circumpolar Indigenous peoples as well as the relevant Language Families can be identified in Figure 2.

Inuit (singular: Inuk, meaning “person”) peoples have traditionally inhabited circumpolar regions from the northeastern coast of Siberia (Chukotka), through northern Alaska to the eastern Canadian Arctic and Greenland. The term Inuit is used both collectively in an international context and to refer to the Indigenous peoples in the eastern Canadian Arctic. Other terms of self-identification are used in other regions including Kalaallit or Greenlandic (Greenland), Inuvialuit (western Northwest Territories, Canada), Inupiat and Yup’ik (Alaska), and Yuit (Siberia) (29). A number of related languages belonging to the Eskimo-Aleut or Inuit-Yupik- Unangan language family. They include Aleut, a number of closely related Yupik dialects, the Inuit dialects of Inupiaq, Inuktitut, Inuvialuktun, Inuinnaqtun, Itivimiut, and Tarramiut, and three Greenlandic dialects (Kalaallisut or West Greenlandic, Tunumiit oraasit or East Greenlandic, and Inuktun or North Greenlandic). Traditional Inuit society was based on a hunter-gatherer subsistence economy and held egalitarian values with family occupying a central focus. While

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European contact brought about significant changes, hunting and land-based cultural activities have remained vitally important to Inuit life in most regions.

Figure 2. Language Families of Indigenous Arctic Peoples (30)

The Dene (meaning “the people”) people include the many First Nations whose traditional lands span from the west coast of Alaska, through the Yukon and the western part of the Northwest Territories and southeast through the northern regions of British Columbia, Alberta, Saskatchewan, and Manitoba. Their traditional land is collectively referred to as “Denendeh”. The languages spoken in these regions are part of the large Athabaskan language family and

10 include Ahtna, Tanaina, Deg Hit’an, Holikachuck, upper Kuskokwim, Koyukon, Tanana, Tanacross, Upper Tanana, Han and Gwich’in in Alaska (31), Gwichʼin, Hän, Upper Tanana, Northern Tutchone, Southern Tutchone, Tagish, Kaska and Tlingit in the Yukon (32), and Gwich’in, North Slavey, South Slavey, Tlicho, and Denesuliné (Chipewyan) in the Northwest Territories (33). Historically, the Dene lived as small bands of people who relied on hunting, fishing and gathering berries. These traditional activities remain important cultural and subsistence practices today.

The Métis are a distinct people of mixed ancestry that originated during the Canadian fur trade. They are decedents of First Nations people and European fur traders (34). The present day circumpolar Métis population is thought to have descended from a cohort of fur traders of mixed ancestry who worked with the North West Company in the late 18th century as well as from Métis families who moved north from the Great Lakes or Red River regions in the early 19th century (35). The circumpolar Métis communities reside primarily in the Great Slave Lake region of the Northwest Territories. In 2003 the Métis people first successfully established Aboriginal status under the Canadian Constitution Act. The North Slave Métis Alliance received the same confirmation by the supreme court of the Northwest Territories in 2013 (36) and, in a recent landmark decision, the supreme court of Canada recognized that the fiduciary responsibility of the federal government extends to Métis people under section 91(24) of the constitution (37).

The Saami (Sami, Sàmi) people comprise the Indigenous population in Fennoscandia and the Kola Peninsula. There are an estimated 69 500 Saami people living in Norway, Sweden, Finland, and Russia on the lands collectively referred to as Sapmi (38). The Saami language belongs to the Finno-Ugric language branch, and is related to Finnish and Estonian. It includes ten main dialects some of which are mutually intelligible. The traditional Saami way of life is frequently represented by reindeer herding although this is no longer the livelihood of most Saami people (27). The Saami people have achieved some degree of self-governance through the creation of Saami parliaments in Finland, Norway and Sweden. The Saami Counsel (formerly the Nordic Saami Counsel), which also includes the Kola Saami Association, has NGO status at the United Nations (UN).

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There are many northern peoples who have Indigenous status within the Russian Federation. These include the Chukchi, Even, Evenks, Nenets, Nivkhi, Itelmen and Yukaghir peoples (27). Because having a small population is a legislative requirement to being granted Indigenous status in the Russian Federation, there are many more peoples from northern Russia who maintain traditional ways of life and identify as Indigenous but are not yet able to hold this legislative status (39). A detailed discussion of each of these peoples is beyond the scope of this text.

Of course, all of these northern Indigenous peoples are diverse with respect to history, culture and language and should in no way be considered to be the same. An assumption of homogeneity carries the risk of essentializing Indigenous peoples and furthering a pejorative notion of otherness. With this understanding in mind, it does remain appropriate to acknowledge the shared history of settler-colonialism an its attendant consequences in circumpolar nations. Each of the Indigenous peoples described have been subject to colonization and the associated policies of either assimilation and/or extermination. Although the timing and nature of this process varied between regions, it invariably included some aspects of Christianization, forced relocation from and exploitation of traditional lands, forced attendance at boarding or residential schools, intentional and/or unintentional introduction of diseases, and the destruction of traditional Indigenous languages, cultures and practices. The social and health inequities experienced by Indigenous peoples worldwide are a direct result of these colonial experiences and in many cases are perpetuated by ongoing structural discrimination. Thus, a study of health and health policy in this context necessitates an appreciation of the shared histories of circumpolar Indigenous peoples and the ongoing policies that shape Indigenous-settler relations.

1.4.3' Maternity'care'in'northern'Canada'

A look at maternal child health in circumpolar regions provides an excellent example of the broader health and health care challenges in circumpolar regions. In some northern regions of Canada, low infant birth weight, perinatal mortality and infant mortality are up to three times higher than the Canadian average (40). Indigenous women and infants endure a disproportionate burden of these health disparities (41, 42). While these disparities are not unique to northern regions, the high proportion of Indigenous people in the North, particularly in Nunavut, makes the health of Indigenous peoples central to circumpolar health (43).

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The delivery of maternity care in circumpolar regions varies both between and within countries. Antenatal and intrapartum care may be provided by an obstetrician, family physician, midwife, nurse, or nurse practitioner. In Canada, physicians provide the majority of prenatal and intrapartum care with nurses and nurse practitioners taking on an increasing role in remote northern regions (44). Midwifery care has also increased substantially in recent years with midwives providing care in a small number of northern communities.

In an attempt to provide care to highly scattered populations, many circumpolar health systems have seen progressive centralization of care over the last four decades. This has led to a decrease in locally available maternity services in rural and remote areas and the consequent practice of routinely evacuating pregnant women for labour and birth. These women leave their home communities at 36-37 weeks’ gestation and must reside in a potentially unfamiliar city until delivery. In some cases, women may be able to stay with family but more often than not they reside in boarding homes, hotels or hospitals. Regional variation exists in funding for medical escorts, meaning that in many regions women must make this journey alone. In Canada, this strategy has been shown to have detrimental psychosocial and cultural effects on women, their families and the wider community without a corresponding improvement in health outcomes (45- 47). Women who have experienced forced evacuation report missing family support during labour and birth, worrying about their families and children at home, and feeling bored and lonely in the boarding home (46). The policy of evacuation disproportionately affects Indigenous women and some have reported not receiving culturally competent care or even experiencing overt racism. Families may also suffer lost income and incur additional childcare costs when women are evacuated. At the community level, routine evacuation has removed birth as a community event and limited the transfer of knowledge around Indigenous traditional midwifery, birthing practices, and ceremonies. Some argue that the policy of routine evacuation adds to the systematic devaluation of traditional birthing and health-related practices and the further colonization Indigenous women (48, 49).

In northern Canada, a small number of community based maternity programs have been developed in response to the desire for locally available and culturally safe maternity care for Indigenous women in rural and remote regions. Many of these programs have been individually evaluated to ensure safety, feasibility and acceptability (6-8). These findings have led to the release of an SOGC policy statement supporting the return of low risk births to rural and remote

13 communities (5). Despite the acknowledgment that the provision of local care represents best practice, remote midwifery and obstetrical services remain limited and are frequently under threat. Furthermore, there is currently no coordinated effort in place to evaluate such programs or to monitor the performance of the system as a whole as it functions in this unique context.

1.5' Health'system'performance'measurement'

In response to financial constraints, aging populations, increasing interest in oversight and accountability, and increasing the availability of information technology, the popularity of performance measurement in health care and in the public sector more broadly has increased dramatically over the past 25 years (1, 50). This section will discuss the nature and purpose of performance measurement, the conceptual and technical challenges associated with performance measurement, the role and necessary characteristics of performance indicators, and the value of using a framework to conceptualize performance measurement efforts. It will also discuss the important considerations of performance measurement as it applies to the health of Indigenous peoples.

1.5.1' The'purpose'of'measuring'health'system'performance''

The World Health Organization (WHO) outlines three inherently valuable objectives or goals of a responsible health system: To improve the health of the population, to ensure fairness in financial contribution, and to be responsive to the needs of the population it serves (51, 52). Improving the health of the population is, of course, the primary and most obvious objective. It refers to not only to the goal of increasing overall population health but also to the goal of decreasing health inequities. Fairness of financial contribution ensures that health care costs incurred by individuals or households should represent an equal sacrifice across the population. That is, no individual or household should be unduly burdened by health or health care related costs. Responsiveness, as it is defined in the literature, generally refers to the ability of the health system to influence the wellbeing of the population independently of improvements in health outcomes (53). It is closely related, but distinct from constructs such as patient-perceived quality of care and patient satisfaction (54). It follows that the responsiveness of the health system and

14 the ability of the system to provide patient-centered and culturally appropriate care may contribute to improved health outcomes but also have intrinsic value in their own right.

A health system may achieve the above goals by carrying out four universal functions which are fundamentally interrelated (52). Most obviously, the health system is responsible for the direct provision or delivery of both personal and public health services. However, is also responsible for the development of the physical, human, and organizational resources required for such services and the financial considerations associated with both resource development and health care delivery. Finally, a stewardship or governance function is embedded within the health system such that it influences each of the other functions. Stewardship is a concept that infuses the leadership role taken by nation states and their actors in the management of health systems with a normative, value-based idea of collective responsibility and social purpose. The relationships between these functions as delineated by the WHO are represented in Figure 3.

Figure 3. WHO Health System Functions and Objectives (52)

The degree to which a health system is able to carry out these functions and achieve these objectives within the resources available constitutes the performance of the system (50). It follows that measurement and improvement of performance are crosscutting elements within each of these functions and are fundamentally embedded in the concept of stewardship.

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Performance measurement is the “process of collecting, analyzing, and reporting information regarding the performance of an individual, group, organization or system.” (55). It is a concept founded in management sciences but has been increasingly applied in health policy to answer the fundamental question, “How healthy is the health system?” (56). Health system performance measurement thus constitutes an ongoing effort to compare performance against the goals of the system. It promotes an environment of accountability, allows for benchmarking against agreed upon targets, and provides service users or consumers with information with which to make choices about their health care. It provides a mechanism to identify gaps or areas for further investigation and can identify opportunities for quality improvement initiatives. It allows for public reporting of performance, which may act as an independent mechanism for performance improvement. The nature of health system performance measurement efforts may vary depending on the desired scope and purpose of evaluation. The people and functions being assessed may differ depending on the individuals and organizations that are of interest or are considered to be part of the health system (57). Performance measurement efforts may also reflect different priorities depending on whether they are externally driven by a need to demonstrate accountability (to political bodies, funding agencies, consumers, or other stakeholders) or internally driven by a desire to support quality improvement efforts. Both externally and internally focused performance measurement strategies allow for benchmarking against performance targets either to draw attention to centers of excellence that maybe rewarded or used as an example and/or to “sound alarm bells” when action is warranted to improve performance (1).

1.5.2' Challenges'and'limitations'of'performance'measurement'

It is important to consider that while performance measurement in health care is a vital component of the system, it is a relatively new and growing science. Stakeholders at all levels should be aware of the potential conceptual and technical limitations of performance reporting so as to ensure it is used appropriately and effectively.

First, performance measurement is not intended to provide causal information and therefore should not be used in isolation to evaluate programs or interventions. Conclusions of causation are more appropriately drawn from research studies designed to measure the effectiveness or efficacy of a specific intervention or series of interventions (58). Similarly, performance

16 indicators cannot provide contextual information or explain why one aspect of a system is or is not meeting targets. It is also important to consider that performance measurement efforts may sometimes have unintended consequences, particularly when performance is tied to significant incentives such as future resource allocation. Emphasis may be intentionally or unintentionally placed on achieving good results in an area that will be publicly reported, thus creating narrow or short-sighted efforts (1, 59). Tying resources to good performance compounds this issue and may serve to increase funding disparities between organizations (60).

Second, performance indicators can be associated with technical challenges. Over the last 25 years, the priorities for performance measurement in health care have gradually shifted from having a sole emphasis on value for money to the inclusion of patient outcomes and health care quality. These strategic changes along with the increased utilization of performance measurement in health care has created an explosion in the number of available indicators and a dramatic increase in the number of organizations reporting similar information. This phenomenon, termed “indicator chaos” as well as the challenges associated with identifying scientifically robust indicators and the temptation to report indicators based on available data, rather than on strategic priorities, has lead to criticism in how health indicators are used in some regions (60, 61).

Ultimately, however, assessment of performance in health care is a necessary component of a responsible health system. These challenges should not discourage use of performance indicators but instead should warrant careful consideration when undertaking the selection and use of performance indicators in health care.

1.5.3' Performance'indicator'selection'&'development'

The task of measuring and reporting on health system performance can be carried out at institutional, community, regional or national levels through the measurement and reporting of performance indicators. The Canadian Institute for Health Information (CIHI) provides a useful definition of a health or performance indicator:

“A [health] indicator is a single measure that is reported on regularly and that provides relevant and actionable information about population health and/or health system

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performance and characteristics. An indicator can provide comparable information, as well as track progress and performance over time.” (62)

It is useful to note that the terms “performance indicator”, “health indicator” and “quality indicator” are often used synonymously. While it is not always a functional imperative to draw a distinction between these terms, a more precise characterization would be to recognize that health care quality represents one component of health system performance. Health indicators capture the health status of a population while quality indicators capture the “goodness” of health care, where high quality health care is considered to be effective, safe, timely, efficient, equitable, and patient-centered (63, 64).

In general, indicators can be generic (relevant to the majority of health service users) or specific (applicable only to a subset of users) (65, 66). They can be considered to represent health system structures, functions or outcomes (57). Physical, social, political, and behavioural determinants of health are also sometimes considered and measured along with health system performance indicators, despite the fact they are not always direct outputs of the health system. The significance of this will be discussed later in this chapter.

In order to be useful, performance indicators should meet a number of important criteria. They must be valid, reliable, sensitive to change, comparable within and between regions, and feasible to measure with available resources. They must be important, actionable, and relevant to the priorities of key stakeholders (51, 65, 67, 68). Validity and reliability can be more precisely defined based on the purpose of the measure. Individual quality or performance indicators are intended to discriminate between groups according to their performance or to evaluate changes in performance over time. Construct validity, inter-rater reliability, and test-retest reliability are thus the relevant measurement properties (69). Construct validity evaluates the degree to which the indicator is an accurate reflection of the construct or, in this case, the dimension of the health system that it is intended to assess. Reliability reflects the degree to which a measured change represents a true change in the value of the indicator. In the case of health outcomes or health system performance measures, the ability of an indicator to produce stable results across time (test-retest reliability) and between raters (inter-rater reliability) are required. Sensitivity to change reflects the ability of the indicator to detect changes in the performance of the system or the quality of care provided. Comparability requires that identical definitions be used both within

18 and between regions where an indicator is to be measured. This can present significant challenges when interregional or international comparisons are intended. Confounding variables must also be identifiable and measurable in order to provide appropriate risk adjustment information. Indicators must also be important and actionable. That is, they must represent a significant aspect of health that can be influenced by the health system. Performance indicators must also be relevant and strategically aligned. In order to establish relevance it is vital that all key stakeholders have an opportunity to define their goals and contribute to indicator selection and development (1, 59).

It follows that a structured approach to indicator selection is an important part of health system planning. Formal consensus processes such as the nominal group consensus (70) and the Delphi approach (67, 71-74) are frequently used. Where evidence on the scientific properties of possible indicators is limited, these processes provide an opportunity to establish evidence through expert opinion. They also allow for the selection and prioritization of a small number of indicators from large pools of potential options and for the input of diverse stakeholders.

1.5.4' Performance'measurement'frameworks'

It is well recognized that the health of a population is the complex result of many factors both within and outside of health systems. A comprehensive health system performance framework allows us to visually and conceptually present the many interdependent factors that influence health, including those factors that are a function of health care quality and those that exist outside the health system (66). An understanding of these relationships forms a foundation upon which to set health system priorities, define targets and measure performance. Many different national and international health system performance frameworks exist. Three examples will be presented here. It should be noted that each of these frameworks is intended to reflect all areas of the health system and may thus include domains or indicators that are unrelated to maternity care.

The Organization for Economic Cooperation and Development (OECD) provides an excellent example of an international performance measurement framework (Figure 4). Its development was undertaken as part of the OECD Health Care Quality Indicators (HCQI) project. The objective of the project was to develop common indicators of health care quality for reporting by OECD member states (75, 76). The major focus of the framework is on the measurement of

19 health care quality according to patient needs across the lifecycle. This area of the framework is highlighted in grey. Accessibility and cost are also included as dimensions of health system performance. Health is ultimately presented at the top of the framework and is depicted as the result of both health system performance and non-health care determinants of health. The concepts of equity and efficiency are included as cross-cutting themes.

The Canadian Institute for Health Information developed their own performance measurement framework for the Canadian health system (63). This framework (Figure 5) demonstrates relationships between four main quadrants: Social determinants of health, health system inputs and characteristics, health system outputs, and health outcomes. The social determinants of health include structural, biological, material, psychosocial and behavioural factors. The health system inputs include the physical and human resources within the system and how these resources are allocated. The health system outputs correspond to the five dimensions of health care performance that are outlined in the OECD framework and the health system outcomes correspond to the overarching health system goals defined by the WHO (Figure 3). As in the OECD framework, equity is a cross-cutting theme. The CIHI framework also highlights the fact that the health system functions within different political, demographic, economic and cultural contexts, although the direct impact of these contextual factors on health and the health system is not explicitly depicted.

The Australian Aboriginal and Torres Strait Islander Health Performance Framework provides a third example of a national performance framework (Figure 6). It is unique, however, in that it is explicitly focused on the health of Indigenous people. It utilizes three tiers that are similar to the quadrants of the CIHI framework: Health status and outcomes, determinants of health, and health system performance. However, the authors also place additional attention on some aspects of the health system that are particularly relevant to Indigenous people in Australia. For example, Tier 3, which focuses on health system performance, includes domains that ensure that health care is continuous and that the health system is capable and sustainable. These reflect challenges that are more prominent in the delivery of care to remote regions and Indigenous communities.

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Figure 4. Revised OECD Framework for Performance Measurement (67)

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Figure 5. CIHI’s Health System Performance Measurement Framework (63)

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Figure 6. Aboriginal and Torres Strait Islander Health Performance Framework (HPF) Performance Measures (77)

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These three frameworks are all conceptually similar. They each recognize health outcomes, health system performance (of which health care quality is a component) and determinants of health as distinct but interrelated factors. The inclusion of non-health care determinants of health, including physical, social and behavioural factors, in each of these frameworks warrants some additional discussion. If one considers the health system to include all organizations whose actions are primarily directed at improving health (52), it is immediately obvious that many determinants of health (such as housing, income, and education) lie outside the direct responsibility of the health system. However, as the WHO Commission on Social Determinants of Health clearly articulates, “health and health equity might not be the aim of all social and economic polities but they will be a fundamental result” (78). Income, social status, education, characteristics of the physical environment, social support networks, genetics, and gender all have significant and well documented impacts on health behaviours, health system access, health outcomes, and wellness (63, 78, 79). Social determinants of health are also the primary driver of health inequities. It is thus imperative to promote and foster an intersectoral approach to health and public policy.

1.5.5' Health'system'performance'and'Indigenous'peoples'

A discussion of the social determinants of health would be grossly inadequate without acknowledging the impact of settler-colonialism and racism on the health and wellbeing of Indigenous peoples (49, 80, 81). Indigenous peoples are disproportionately affected by the aforementioned determinates of health as well as by racism, colonization, and self-determination (49, 80, 81). In circumpolar regions, these structural, political, and social determinants are often compounded by issues associated with physical isolation, harsh climates, increased industrialization, and changing environmental conditions. These unique northern challenges dramatically increase the prevalence and impact of inadequate housing, food insecurity, inadequate education, unemployment, poor access to health care, and the resultant health disparities affecting northern peoples.

In recent years, there has been growing global public attention focused on injustices suffered by Indigenous peoples and the urgent need to close gaps in health and welfare and to respect and promote efforts for Indigenous self-determination. In 2007, the UN Declaration on the Rights of Indigenous Peoples (82) was adopted by the General Assembly. It states that “Indigenous

24 individuals have an equal right to the enjoyment of the highest attainable standard of physical and mental health” (Article 24.2) and that “Indigenous peoples have the right to be actively involved in developing and determining health, housing and other economic and social programs affecting them and, as far as possible, to administer such programs through their own institutions” (Article 23). Politicians and state leaders in Canada, the United States, Australia, and Norway have issued public apologies accompanied by varying commitments to financial aid and reparations for the historical injustices suffered by Indigenous peoples (83, 84). In Canada, the recent release of the final report of the Truth and Reconciliation Commission has brought public and political attention to the devastating effects of residential schools and the need to develop a new type of relationship between Indigenous and non-Indigenous peoples and organizations in Canada (85). Within a growing environment of recognition, reconciliation and Indigenous self-determination we have an opportunity and an obligation to make the health and wellness of Indigenous peoples a collective priority.

It is thus essential that health system performance measurement strategies explicitly include efforts to decrease health inequities and to improve the health and wellness of Indigenous peoples. These efforts must incorporate Indigenous values and expectations, reflect Indigenous ways of knowing, and include the improvement of local and regional information systems (86, 87). Indigenous communities and organizations should not only be empowered to be advocates for better care but they should be partners in the process of identifying priorities and selecting relevant heath and performance indicators.

1.6' Objectives'&'research'questions'

The primary objective of this project was to select contextually relevant performance indicators for maternity care in circumpolar regions.

First, a scoping review was conducted in order to address the following questions: What performance indicators and frameworks are currently available to monitor the performance of maternity care systems serving circumpolar or primarily Indigenous populations? What regions and populations are represented in this literature?

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From a working list of indicators, we then sought to select a set of key indicators for maternity care in the circumpolar context. The selection process addressed the following questions: Which available indicators are most important and relevant in the circumpolar context, and which of these indicators can provide valid and reliable performance information, as assessed by experts in the field? Is a modified Delphi approach an effective and appropriate method for the selection of performance indicators within the circumpolar context?

Through a knowledge translation and community feedback workshop we then began to explore whether or not the above efforts were able to adequately capture the priorities of circumpolar Indigenous peoples and to identify areas for future work in circumpolar health system performance measurement.

1.7' Ethics'

This study was carried out in accordance with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Particular attention was devoted to the content of chapter 9, Research Involving the First Nations, Inuit and Métis Peoples of Canada (88). The project was carried out in consultation with a First Nations Elder, medicine woman and healer who has extensive experience working with researchers and within the health system. Her involvement and guidance helped to ensure that the project adequately considered and respected the interests of Indigenous peoples and that community engagement and feedback was appropriately conducted.

Approval was obtained from the University of Toronto research ethics board prior to commencement of the project. In addition, multi-year research licenses were obtained from the Aurora Research Institute (Northwest Territories) and the Nunavut Research Institute in accordance with territorial research requirements.

This

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1.8' Map'of'the'thesis'

The thesis is divided into seven chapters. The second and third chapters each discuss a component of the research project including detailed descriptions of the study design, data analysis and research findings. Chapter four describes a knowledge translation and community feedback workshop that also served to collect some qualitative data and identify priorities for future work. While these three components are presented and may be understood independently from one another, they were conceived of as a single study with shared epistemological and theoretical underpinnings (Figure 7). Chapter five will then present a general discussion of the study findings and limitations. Chapters six and seven will present the conclusions of the study as well as a discussion of future directions.

Figure 7. Project Map

Axiology Circumpolar/Context Epistemologies Researcher/Values Physical/ Context Indigenous/ Ways/of/Knowing • Patient)autonomy • Vast)distances • Holistic)view)of)health)and)wellness • Indigenous) selfC • Harsh)winter)climates • Interconnectedness) of) all)things Research determination • Low)population) density • Traditional)and)experiential) Standpoint/ &/ • Health)system) • Limited)human) resources knowledge)of)childbirth responsiveness • Importance) of)place Context Social,/Political/ &/Historical/Context • Social)justice Western/Biomedical/ Paradigm • Indigenous) and)nonCIndigenous) • Physical)interpretation)of)health) communities • Hierarchy)of)evidence • Colonial)legacies • Safety)>)responsiveness

Post/Colonial/ Theory Etuaptmumk • Recognizes) the)powerful)and) • TwoCeyed)seeing destructive)force)of)colonialism • Utilize)the)strengths)of)both)western)and) Theory • Colonial)legacies)shape)political) Indigenous) worldviews)simultaneously futures)of) colonized) nations)and)the) • Western)and)Indigenous) ways)of) identities)of)colonized)peoples knowing)are)valued)equally

Knowledge/ Synthesis Consensus/ Building MixedFmethods* • Synthesizing)and) • Important)strategy)when) • Integrate)qualitative) Methodologies summarizing)the)evidence) evidence)is)limited)or)conflicting and)quantitative)data around)a)particular)issue • Allows)creation)of)evidence) • Sequential)&)embedded) through)expert)opinion) designs

Scoping/Review Delphi/Panel Workshop* • Examine) the)extent,)range)and) • Questionnaires)interspersed) • Engagement)of)Indigenous) nature)of)research)activity) with)structured)feedback Knowledge)holders)and)Delphi) Methods • Identify)research)gaps)in)the) • Measure)agreement) participants existing)literature • Achieve)consensus • CoCfacilitated)by)researcher) and)First)Nations)Elder

Knowledge/ Thesis,)academic) Workshop)engaging)Indigenous)Knowledge) Reports)to) publications) &) holders)and)Delphi)participants)C CoCfacilitated) ICHR)research) Translation funding) and) presentations by)researcher)and)First)Nations)Elder Rounds licensing)agencies

* Grey!items!indicate!that!results!are!not!included!in!the!thesis!but!that!these!components!play!a!significant!role!in! future!directions.!

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Chapter'2'' Scoping'Review' 2' Scoping'Review' 2.1' Abstract'

Background: In circumpolar regions, harsh climates and scattered populations have prompted the centralization of care and reduction of local maternity services. The resulting practice of routine evacuation for birth points to a potential conflict between the necessity to ensure patient safety and the importance of delivering services that are responsive to the health needs and values of populations served.

Objective: To identify recommended performance/quality indicators for use in circumpolar maternity care systems.

Methods: We searched Scopus, Ebscohost databases (including Academic Search Complete and CINAHL), the Global Health Database, High North Research Documents, and the online grey literature. Articles were included if they focused on maternal health indicators in the population of interest (Indigenous women, women receiving care in circumpolar or remote regions). Articles were excluded if they were not related to pregnancy, birth, or the immediate post-partum or neonatal periods. Two readers independently reviewed articles for inclusion and extracted relevant data.

Results: Twenty-six documents met the inclusion criteria. Twelve were government documents, seven were review articles or indicator compilations, four were indicator sets recommended by academics or non-governmental organizations and three were research publications. We extracted and categorized 81 unique health indicators. The majority of indicators reflected health systems processes and outcomes during the antenatal and intra-partum periods. Only two governmental indicator sets explicitly considered the needs of Indigenous peoples.

Conclusions: This review demonstrates that, while most circumpolar health systems engage in performance reporting for maternity care, efforts are very heterogeneous and indicators put to use do not necessarily reflect local priorities and health challenges.

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2.2' Introduction''

Assessment of performance in health care is a necessary component of an accountable and transparent health system. It underpins our ability to assess and improve quality of care and provides accountability for the systems successes and failures. Indicators of health system performance can reflect structural features of the health system, processes of care, or health outcomes (57). They can be measured at institutional, community, regional or national levels. They must be clinically relevant, actionable, valid, reliable and feasible to measure. However, they must also reflect the local context and be aligned with the strategic priorities of the system they are intended to help evaluate (89).

Consideration of context is particularly important in circumpolar health care systems. Many territories in circumpolar regions share challenges of vast distances, low population densities, and harsh climates. These challenges make travel for health care difficult and expensive, but often necessary. Many circumpolar regions also share histories of settler-colonialism and have health systems that were built without the consultation and collaboration of the Indigenous communities for whom they provide care. The social determinants of health which drive the health inequities between Indigenous and non-Indigenous people in many countries are rooted in these colonial legacies (90, 91). These disparities are often further exacerbated by the challenges associated with providing health care to remote populations (13). Furthermore, unlinked information systems in many northern regions contribute to poor continuity of care and make systematic performance reporting difficult.

Maternity care provides an excellent example through which to observe this context. In northern Canada, for example, many studies have demonstrated the disparities in maternal child health that exist between Indigenous Canadians and the general population (2-4, 92). In an attempt to provide care to a highly scattered population, northern health systems have seen progressive centralization of care. The result is that women in remote communities must leave their homes and families in preparation for labour (5). Many clinicians and policy makers view this model of care as a necessary compromise in health system responsiveness in order to ensure maternal and infant safety. However, in the context of low risk birth, the practice of routine medical evacuation has been shown to have detrimental psychosocial and cultural effects on women and communities without a corresponding improvement in health outcomes (7, 45, 93). In response

29 to local needs, a small number of community-based maternity care programs have been developed and evaluated to ensure safety, feasibility and acceptability (6, 7). However, there are currently no existing measurement systems that can provide inter-regional comparisons of these initiatives or a wider evaluation of maternity care in this unique context.

In undertaking performance measurement in the circumpolar context, the literature emphasizes the importance of considering Indigenous values and models of health care delivery (86, 94). The objective of this study was to identify published or in use health system performance indicators that might be applicable to maternity care systems in circumpolar regions. In addition, we sought to identify performance measurement systems that consider the unique circumpolar context or have been built upon the priorities of Indigenous communities.

2.3' Methods'

This scoping review was conducted in order to determine the extent, range and nature of research and health policy related activity pertaining the performance of maternity care systems in circumpolar regions. A scoping review is a structured method of evidence synthesis which, like a systematic review, seeks to summarize the evidence on a given topic using clearly defined, transparent and replicable methods (95, 96). It differs from a systematic review, however, in that it is designed to address a relatively broad topic area and thus employs much wider inclusion criteria which may be developed in an iterative fashion (97). In this scoping review, we aimed to address the following questions: What indicators are available to evaluate the performance of maternity care systems that serve a circumpolar or primarily Indigenous population? What regions and populations are represented in this literature? In addition, we sought to identify gaps in the existing literature and directions for future work.

2.3.1' Setting'and'population'

The Canadian experience of health care delivery is not unique. Many territories in the circumpolar region of the globe share challenges of vast distances, harsh climates and limited human resources. Many of these regions also share a recent history of colonialism, which has resulted in significant inequities in the determinants of health and health outcomes for

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Indigenous peoples. This project utilizes this shared experience by taking a circumpolar perspective and highlighting findings that focus on Indigenous populations.

The population of interest in this review is comprised of selected Indigenous (First Nations, Inuit, Métis, and Saami) and non-Indigenous women seeking pregnancy-related care in circumpolar regions. However, as the intention of this scoping review was to broadly identify possible indicators for use in this context, we expanded our search to include publications focused on Indigenous pregnant women seeking care in other regions such as Australia and New Zealand.

2.3.2' Search'strategy'

Guided by an academic health science librarian (JL) experienced in literature search strategies for comprehensive identification of research pertaining to Indigenous, northern and remote populations, broad searches of online research databases and grey literature were performed. Reference lists of key publications were also examined to ensure completeness.

Electronic research databases: Searches were performed using the Scopus interdisciplinary database, several Ebscohost databases (including CINAHL, Academic Search Complete, Canadian Reference Centre, and Women’s Studies International), the Global Health database (OVID) and the High North Research Documents archive. First, a broad search was conducted using Scopus and Ebscohost in order to identify literature focused on maternal and perinatal health in circumpolar regions published from Jan 1, 1985 to Aug 1, 2015. The Global Health database was also searched to identify any additional works related to perinatal health in circumpolar regions published over the same time period. In order to ensure identification of international publications, these searches were not limited by language. Additional searching was carried out in Scopus and Ebscohost to identify documents focused on Indigenous maternal or perinatal health indicators as well as recent documents focused on global maternal or perinatal performance measurement systems or frameworks. Finally, we searched the High North Research Documents archive (High North RD), a searchable open access database that focuses on northern based research publications. In all cases, keyword and subject searching were performed. The initial search strategy (Appendix 1) was adapted for each subsequent search depending on the limits and features available within each database.

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Grey literature: Relevant grey literature was identified through a series of searches using the Google Advanced platform (https://www.google.ca/advanced_search). The keywords “health system”, maternal, performance, and indicators were used for each search. Additional key words (Appendix 1) were used to narrow the search to first, to circumpolar regions (circumpolar Alaska Yukon “Northwest Territories” Nunavut Nunavik Nunatsiavut Labrador Greenland “northern Finland” “northern Sweden” “northern Russia” Siberia “northwest Russia” Iceland “northern Norway") and second, to Indigenous populations (Indigenous Aboriginal "native American" "Alaska native" "American Indian" "First Nations" Métis Inuit Saami Greenlandic). Each of these searches was repeated in order to capture publications from each of the eight circumpolar nations (Canada, USA (Alaska), Greenland, Iceland, Norway, Sweden, Finland, and Russia). For each search, we sought documents that were published from Jan 1, 2000 to Oct 20, 2015. No language filters were used. Hand searching of key government websites for each region was also carried out. Test searches were carried out in http://www.google.com/advanced_search using identical search terms to ensure that the search findings were not being skewed towards Canadian sources.

2.3.3' Article'selection'

The article selection process and findings are summarized in Figure 8. Articles were selected based on the following criteria:

Inclusion criteria: •' The article describes a performance measurement framework or it describes or lists performance/quality indicators.

•' The article focuses on maternity care indicators or maternal or neonatal health outcomes (antepartum, intra-partum, post-partum, neonatal periods).

•' The population of interest includes Indigenous women, or women receiving maternity care in circumpolar, rural, or remote regions.

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Exclusion criteria: •' The article includes only pediatric health indicators or outcomes measurable after the neonatal period (>28 days of life)*

•' The reproductive health indicators are not directly related to pregnancy, birth or the immediate post-partum period†

The electronic research database searches retrieved a total of 592 publications. These were exported into reference management software (EndNote X7) and 245 duplicate citations were removed using electronic de-duplication and manual screening. Two authors (RR, TD) independently reviewed the titles and abstracts of the remaining 347 citations. Eight of these were non-English publications which were accompanied by an English translation of the abstract provided by the database. Seventeen articles were selected for full text review. Three additional publications were identified by hand searching the reference lists of key papers. Using an article selection form designed for the purposes of this study (Appendix 2), nine studies identified through academic research databases were chosen for inclusion in the review.

The additional search of High North RD retrieved 792 publications. As the High North RD platform does not allow for electronic detection of duplicate records, or for the export of citations into reference management software, a single author (RR) screened these titles manually. Google translate was used to translate non-English language titles. No relevant articles were identified that had not been previously retrieved in our earlier comprehensive searches.

Searches of online grey literature generated a total of 7264 citations available online in October 2015. A single author (RR) screened results using titles and, where necessary, abstracts or executive summaries. The Google platform provides citations in order of search relevance and therefore the frequency of relevant documents diminished quickly as screening moved down the

* Outcomes in the post-neonatal period (28 days – 1 year of life) are vitally important in monitoring population health and health system performance. However, the leading causes of morbidity and mortality in this period are due to congenital anomalies, sudden infant death syndrome, and infection. These outcomes are heavily influenced by social and environmental determinants of health such as nutrition, housing, and poverty but are less sensitive to changes in access to or quality of maternity and neonatal care. Neonatal outcomes (<28 days of life), however, are heavily affected by pregnancy, birth, and access to neonatal resuscitation and are thus of interest for this review. † Immediate post-partum period is defined as <6 weeks following birth

33 list of results. For efficiency purposes, each iterative search was modified after 30 consecutive results were screened and found to be irrelevant. A total of 14 publications were selected for full text review. Focused browsing of government websites and reference lists of key publications generated 22 additional citations for full text review. Of these 36 documents, 17 were selected for inclusion.

Figure 8. Adapted PRISMA Diagram

Records(identified(in(peer( Focused(hand(searching(of( reviewed(literature( key(organization(websites (n=592) (n=22)

Duplicates(removed( Identification (n=245) Records(identified(for(full( text(review(through(Google( Records(screened Advanced(searches (n=347) (n=14)

Records(excluded

Screening (n=330)

Additional(records(identified( through(key(papers (n=3)

Full(text(articles(reviewed( Full(text(documents(reviewed( (n=20) (n=36) Eligibility

Documents(excluded (n=30) List(of(performance(indicators(or( Documents(included( PM(framework(not(provided((14) (n=26) Population(of(interest(not(relevant( Government(generated(performance( to(circumpolar(context((9) measurement(framework,(indicator(set,(or( Indicators(provided(do(not(address( performance(report((12) maternity(care(system((3) Inclusion Review(article(or(compilation(of(indicators((7) Duplicate(record/updated(version( NonPgovernmental(development(of(an(indicator( also(available((4) set(or(framework(for(a(specific(population((4) Research(paper((cohort(study)(using(existing( indicators(as(outcomes((3)

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2.3.4' Data'extraction'

A data extraction form was designed for the purposes of this study (Appendix 3). A single author (RR) piloted the form using three randomly selected academic publications and two grey literature publications and revised the form in an iterative fashion. Two independent reviewers (RR, TD) extracted information from each study on the following topics: (1) Characteristics of the publication, including source and type of publication, and research methods; (2) the target region, population of interest and whether or not the publication was focused on the health of Indigenous peoples; (3) the indicators reported; and (4) the indicator source or larger framework from which it was extracted, including the level of stakeholder participation involved in indicator development. In general, there was excellent concordance between the findings of the two reviewers. Disagreements were resolved with discussion and, where necessary, involvement of a third reviewer (SC).

Many publications spanned both circumpolar and non-circumpolar regions. Some publications focused on indigenous populations in entirely non-circumpolar regions. In these cases, indicators were extracted if data was collected in a circumpolar area or if results were stratified by Aboriginal identity.

2.4' Results'

In total, 26 documents were included in the scoping review. The characteristics of these documents as well as their primary findings are summarized in Table 1.

2.4.1' Included'publications'

Of the nine publications identified in the academic literature, one article was from Canada and described the generation and use of maternal and child health (MCH) indicators to evaluate the performance of the Inuulitsivik midwifery service serving the Hudson coast of the Nunavik Inuit region in northern Quebec (8). Two articles were from Greenland, including a review of available child health indicators (98) and a critique on the use of low birth weight (LBW) as maternal-child health indicator in Greenland (99). Four articles were from Australia and focused specifically on maternal health indicators in the Australian Aboriginal and Torres Strait Islander

35 populations (100-102). Of note, the same research group generated three of these four publications. Another article was a retrospective cohort study comparing results of key maternal and child health (MCH) indicators in northern Norway with those of the entire country (103). One publication was a pan-European assessment of health systems performance (104). All nine articles were English language articles published in 2007 and later.

The grey literature generated 17 heterogeneous publications that were very heavily weighted toward North American sources. The Canadian Institute for Health Information and the Public Health Agency of Canada (PHAC) contributed three national level indicator sets (44, 105, 106). First Nations organizations contributed two publications (94, 107) and provincial and territorial governments contributed three publications (108-110). The United States Centers for Disease Control (CDC) health indicators warehouse compiled American health indicators from a wide variety of data sources (111). The Association of Maternal & Child Health Programs (AMCHP) provided a second American source of indicators (112). The literature from Australia and New Zealand contributed five publications that focused on the health of Indigenous peoples or provided results based on Indigenous status (77, 113-116). While only two sets of indicators were identified in the European literature, both were the result of coordinated pan-European efforts (117, 118).

In total, only half of the publications included any level focus on the health of Indigenous peoples. Even fewer described a process by which stakeholders were able to contribute to the selection and development of indicators or health system performance frameworks. In publications where the indicator selection process was discussed, indicators were chosen based primarily on expert consensus and the degree to which they met scientific criteria such as reliability, validity or sensitivity to change. The availability of high quality data was also frequently discussed as a selection criterion.

36

Table 1. Included Studies

Target- Indigenous- Author/organization- Year- Purpose/Methods- Key-Findings- Region- Focus-

•' 83!indicators!listed!under!Maternal!Child! Centers!for!Disease!control! •' Online!health!indicators!warehouse!which! Health!(MCH);!38!indicators!are!measureable! 2015! compiles!indicators!from!a!variety!of! in!the!antepartum!or!neonatal!periods;!27! USA/Alaska! No! (111)! American!frameworks!and!data!sources! indicators!are!measured!in!Alaska!and/or!are! stratified!by!Indigenous!status!

•' 10!maternal!health!indicators!are! •' Online!library!of!all!health!indicators! Canadian!Institute!for! reported! collected!by!CIHI!with!link!to!the!CIHI!health! ! •' National,!provincial/territorial!results! Health!Information!(CIHI)! 2015 systems!performance!measurement! Canada! No! reported!but!some!results!are!aggregated! (119)! framework!and!report!on!its!development! where!numbers!are!small!

•' Report!includes!five!maternal!health! indicators! New!Zealand!Ministry!of! •' Government!report!on!selected!health! ! •' Indicators!in!this!report!were!selected! 2015 indicators!by!Maori/nonSMaori!status! New!Zealand! Yes! Health!(116)! based!on!relevance!to!Maori!people!but! were!not!Maori!specific!!

Nordic!MedioSStatistical! •' Annual!publication!of!Nordic!MedioS Statistical!Committee!(NOMESCO)!including! •' Includes!small!section!including!13! Nordic! Committee!(NOMESCO)! 2015! No! results!of!health!indicators!and!overview!of! reproductive!health!indicators! regions! (118)! regional!health!systems!

•' Describes!59!life!course!indicators,! Association!of!Maternal!&! •' Government!report!describing!the! including!9!maternal!health!indicators! ! selection!of!MCH!indicators!using!a!lifeScourse! Child!Health!Programs! 2014 •' Provides!information!on!indicator! USA/Alaska! No! framework! (112)!! properties!!

•' Provides!definitions!and!information!on! •' Government!report!describing!the! Australian!Health! indicator!properties!for!13!indicators! development!of!performance!measurement! ! reflecting!maternal!health!! Ministers'!Advisory!Council! 2014 framework!specific!to!the!health!of!Aboriginal! Australia! Yes! •' Significant!stakeholder!involvement!in! (77)! people!in!Australia! indicator!and!framework!development!

•' Reports!results!of!26!key!maternal!health! indicators!! Kildea!et!al.!(101)! 2013! •' Retrospective!observational!study! Australia! Yes! •' Demonstrates!health!disparities!between! Aboriginal!and!nonSAboriginal!Australians!!

•' Reports!on!composite!rating!of!overall! •' CrossSsectional!comparison!of!pooled! health!system!performance!! MacKenbach!(104)! 2013! health!systems!performance!across!European! •' Assessment!of!three!maternal!health! Europe!! No! countries! indicators!that!are!routinely!reported!in!all! European!countries!

•' Retrospective!observational!study!using! •' Compares!results!of!10!maternal!health! Northern! Norum!et!al.!(103)! 2013! data!from!the!Medical!Birth!Registry!of! indicators!by!region!(northern!Norway!vs.! No! Norway!(MBRN)! National)!! Norway!

•' Reports!results!of!26!maternal!health! •' Government!report!describing!indicators! Public!Health!agency!of! indicators!by!province/territory!although! ! reported!as!part!of!the!Canadian!Perinatal! 2013 there!is!insufficient!data!to!provide! Canada! No! Canada!(106)! Surveillance!system!(CPSS)! territorial!results!for!all!indicators!

Steering!Committee!for!the! •' Multisectoral!performance!report! •' Includes!four!maternal!health!indicators!! Review!of!Government! 2013! including!health!performance!framework!and! •' Some!results!are!stratified!by!Indigenous! Australia! No! Service!Provision!(120)! indicator!reporting! status!

37

Target- Indigenous- Author/organization- Year- Purpose/Methods- Key-Findings- Region- Focus-

•' Six!of!the!discussed!indicators!of!health! inequity!pertain!to!maternal!health! •' Commissioned!report!for!the!BC! •' Focus!on!immigrants,!refugees,!and! Population!and!Public!Health!Program!and! British! individuals!transitioning!into!and!out!of!the! ! Provincial!Health!Services!Authority! Daghofer!et!al.!(108)! 2013 corrections!system!but!with!recognition!that! Columbia! No! •' A!review!of!health!equity!indicators!for! Aboriginal!peoples,!women,!and!people!in! (Canada)! reporting!in!British!Columbia,!Canada! rural/remote!also!suffer!from!health! inequities!

•' Literature!review,!ethnographic!study,! •' 31!maternal!indicators!identified!and! stakeholder!interviews,!expert!consensus!to! classified!using!a!framework!adapted!from! ! Steenkamp!(102)! 2012 compile!and!evaluate!in!use!and!new! the!Aboriginal!and!Torres!Strait!Islander! Australia! Yes! indicators! Health!Performance!Framework!

•' 8!indicators!reflect!maternal!health! •' Report!describing!First!Nations!Regional! First!Nations!Information! •' Data!only!collected!for!First!Nations! ! Health!Survey!and!cultural!framework! 2012 people!living!on!reserve!or!in!northern!First! Canada! Yes! Governance!Centre!(107)! •' Descriptive!report!on!survey!results! Nations!communities!

•' Reports!includes!results!of!14!maternal! •' Report!generated!by!northern! health!indicators!by!region! Northern! Irvine!et!al.!(110)! 2011! Saskatchewan!Health!authorities!on!health! •' Not!specific!to!Indigenous!people!but!50%! Sask.! Yes*! outcomes!and!determinants!of!health!! of!residents!within!these!health!authorities! (Canada)! live!on!First!Nations!reserves!

•' Describes!selection!of!10!maternal!health! •' Creation!of!database!for!evaluation!of! indicators!for!evaluation!of!Inuulitsivik! Nunavik! ! Inuulitsivik!midwifery!service! Van!Wagner!et!al.!(8)! 2011 midwifery!service!and!reports!results!! Yes*! •' Retrospective!observational!study! (Canada)! !

•' Literature!review!and!multiple!Delphi! •' Ten!core!and!20!recommended!indicators! EuroSPeristat!(117)! 2010! consensus!processes!to!select!and!develop! are!included! Europe! No! pan!European!maternal!health!indicators! •' Results!for!all!indicators!are!presented!

•' Includes!description!and!reporting!of!four! maternal!health!indicators!! •' Review!of!MCH!indicators!currently!used!in! ! •' Calls!for!addition!of!maternal!mortality! Kildea!et!al.!(100)! 2010 Australian!governmental!reporting! Australia! Yes! ratio!(MMR)!to!routine!surveillance!in! Australia!

•' Reports!on!33!child!health!indicators! •' Review!article!(scientific!literature!and! including!six!relating!to!pregnancy!or!the! government!websites)!of!child!health! early!neonatal!period! ! indicators!! Niclasen!et!al.!(98)! 2009 •' Recommends!a!further!list!of!child!health! Greenland! Yes*! •' Selection!of!indicators!appropriate!for!use! indicators!for!which!existing!data!sources!are! in!Greenland!! not!available!

•' 37!indicators!were!pertinent!to!the! •' Reports!on!the!results!of!the!Maternity! antenatal,!intrapartum,!postpartum!or! Public!Health!Agency!of! Experiences!Survey,!a!nationSwide!survey!of! neonatal!periods! 2009! postSpartum!women!designed!to!capture! •' While!the!survey!deliberately!focused!on! Canada! No! Canada!(44)! their!experiences!with!care!and!other!patient! Indigenous!women,!they!excluded!women! reported!outcomes! living!on!First!Nations!reserves!and!other! vulnerable!populations!

•' Three!maternal!health!indicators!are! New!Zealand!Ministry!of! •' Annual!government!report!demographic,! included! 2007! New!Zealand! No! Health!(115)! health!and!socioeconomic!indicators!! •' All!indicators!are!stratified!by!Indigenous! status!where!data!was!available!

•' Literature!review,!key!stakeholder! •' Reviews!the!evidence!for!the!use!of!LBW! interviews,!focus!groups!to!assess!value!of! as!a!MCH!indicator!and!reports!risk!factors! ! LBW!as!an!indicator!! Niclasen!(99)! 2007 for!LBW!according!to!Greenlandic!national! Greenland! Yes*! •' Observational!study!of!LBW!in!Greenland! birth!register! using!national!birth!register!data!

•' Outlines!performance!indicators! •' Review!article!on!historical!and!current! pertaining!to!Aboriginal!people!in!Australia! health!systems!performance!measurement! Anderson!et!al.!(113)! 2006! prior!to!2006! Australia! Yes! systems!for!Torres!Strait!Islanders!in!Australia! •' Includes!four!maternal!health!indicators!!

38

Target- Indigenous- Author/organization- Year- Purpose/Methods- Key-Findings- Region- Focus-

•' Review!article!on!historical!and!current! •' Provides!compendium!of!Aboriginal! health!systems!performance!measurement! health!indicators!that!were!reported!on!for!a! systems!for!Aboriginal!people!in!Canada! Anderson!et!al.!(94)! 2006! subset!of!Aboriginal!Canadians!prior!to!2006! Canada! Yes! •' Literature!review,!key!informant! •' Includes!five!maternal!health!indicators!! interviews,!consultation!with!leaders!

•' Nunavut!MOH!report!on!a!set!of!indicators! •' Report!includes!results!of!two!maternal! Nunavut! Healy!et!al.!(109)! 2004! Yes*! jointly!agreed!upon!by!ministries!! health!indicators! (Canada)!

•' Describes!AMAP!including!12!maternal! •' Invited!review!of!Arctic!Monitoring!and! ! health!outcomes!that!are!collected!as!part!of! Hansen!et!al.!(121)! 2002 Assessment!Program!(AMAP)! Circumpolar! No! the!program!

*Assumed!to!be!focused!on!an!indigenous!population!based!on!region!

2.4.2' Available'performance'measurement'frameworks'

Eight of the included studies discussed the use of a performance measurement framework to prioritize or categorize indicators on a conceptual basis. Both the New Zealand Ministry of Health (115, 116) and the Australian Health Ministers’ Advisory Counsel (77) have developed local health strategies and performance frameworks that focus on the health of Indigenous peoples. The New Zealand Ministry of Health utilizes the Maori Health Strategy which outlines the pathways, key threads and directions that lead to Wai Ora (healthy environments), Weanau Ora (healthy families), and Mauri Ora (healthy individuals) (122). The Australian Aboriginal and Torres Strait Islander Health Performance Framework utilizes three tiers: Health status and outcomes; determinants of health; and health system performance. Within the determinants of health tier, the authors place specific attention on the social determinants of health and on racism and discrimination. This framework includes a chronological thread, acknowledging the importance of a life course approach to primary care (77). The American Association of Maternal and Child Health Programs (112) also frames its performance measurement efforts using a life course approach (123).

The indicators published by the Canadian Institute for Health Information were selected based on a pan-Canadian framework which demonstrates relationships between four main quadrants: Social determinants of health, health system inputs and characteristics, health system outputs, and health outcomes (63). The Canadian First Nations Regional Health Survey (FNRHS) was developed in conjunction with an underlying cultural framework, which is designed to capture the “total health of the total person within the total environment” (107). While the other frameworks consider health system capacity and characteristics, determinants of health, and

39 health outcomes using a western paradigm, the RHS Cultural Framework utilizes a circular model, which includes vision, relationships, reason, and action for each of the four directions.

Many publications identified were review articles, which compiled indicators from many sources and thus did not discuss their underlying frameworks in any detail. No health system performance frameworks were identified that took a northern, Arctic, or circumpolar approach.

2.4.3' Available'performance'indicators'

A total of 386 performance indicators were identified through the literature search. Two hundred and eighty-five duplicate or redundant indicators were removed. Twenty more indicators were eliminated because they were not directly related to pregnancy, birth or the immediate post- partum period. The remaining 81 indicators were classified according to a modified version of the OECD health performance framework (75) and are presented in Table 2. The OECD framework subdivides indicators according to health care needs. These include staying healthy, getting better, living with illness or disability, and coping with end-of-life. For the purposes of this study, this aspect of the framework was modified to reflect periods along the patient journey including antenatal care, labour and birth, post-partum care, and neonatal care.

Indicators focusing on physical health outcomes and health care effectiveness represented the majority of indicators identified. Very few indicators of patient safety, accessibility, health system responsiveness, or health care costs were identified (Figure 9). The ten indicators of health system responsiveness were derived from three publications in Canada, Australia, and New Zealand, which attempted to capture the experiences of both pregnant women and Indigenous people accessing the health system (44, 77, 116). None of these measures of responsiveness were accompanied by evidence of their reliability or validity.

Many of the indicators identified in this review are currently in use. However, some indicators have been suggested or recommended by individual authors or organizations but are not in regular use. An assessment of the feasibility of these indicators is thus beyond the scope of this review.

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Table 2. Available Indicators

! Antenatal' Birth' Postpartum' Neonatal' Determinants'of' Teenage&pregnancies& & & Breastfeeding&practices&& Health' Advanced&maternal&age& Involvement&of&child&and&family&services&or& similar&organization& Maternal&BMI& & Maternal&marital&status& Maternal&education&level& Domestic&violence&& Tobacco&exposure&during&pregnancy& Use&of&illicit&drugs&during&pregnancy& Use&of&alcohol&during&pregnancy& Exposure&to&environmental&contaminants& Patient&experience&of&stressors&during& pregnancy& Patient&knowledge&and&preferred&sources&of& information®arding&health&practices&& Patient&self&reported&reaction&to&conception& Health' Urinary&tract&infection&in&pregnancy& Stillbirths& Maternal&mortality& Neonatal&mortality&& Outcomes' Anemia&during&pregnancy& Perinatal&deaths& Severe&maternal&morbidity&(composite& Severe&neonatal&morbidity&(composite& outcome)& outcome)& Eclampsia& Preterm&births& Post&partum&hemorrhage& Congenital&anomalies& Diabetes&in&pregnancy&& Mean&Gestational&age& Post&partum&depression& Small&for&Gestational&Age&(<10%ile)&Infants& Spontaneous&abortions& & & Mean&newborn&birth&weight&& Ectopic&pregnancies& & Low&birth&weight&infants&(LBW<2500g)& Large&for&gestational&age&infants&(>90th%ile)& 5&min&APGAR&score&<7& Effectiveness' Antenatal&urine&testing&& Women&reporting&shaving,&enema,&pushing& Maternal&readmission&to&hospital& NICU&admission& on&abdomen&at&time&of&birth& Antibiotic&prescriptions&for&antenatal&UTIs& Post&partum&contraception& Neonatal&readmission&to&hospital& Induction&and&augmentation&of&labour& Complete&blood&examination&& Uptake&of&male&neonatal&circumcision& Post&term&births& Folic&acid&supplementation& VBAC&(after&single&previous&C/S)& HIV&testing& Instrumental&vaginal&deliveries&& Smoking&cessation&counseling&in&pregnancy& Caesarean§ions&

41

! Antenatal' Birth' Postpartum' Neonatal' Safety' & Births&without&obstetric&intervention& Post&partum&infections&& & Perineal&trauma&(3rd&and&4th°ree&tear)&& Responsiveness' Indigenous&care&providers& Patient&reported&support&during&labour&and& Presence&and&utilization&of&breastfeeding& & birth& support&programs& Cultural&competency&of& providers/organizations& Maternal&position&for&birth& Patient&reported&satisfaction&with&care& Patient&reported&unfair&treatment&based&on& Use&of&analgesia&in&labour& ethnicity& Mother\infant&contact&at&birth& Discharges&against&medical&advice& Accessibility' Frequency&and&timing&of&antenatal&care& Birth&attendant&& Post&partum&visits& & Prenatal&care&provider& FHR&monitoring&during&labour& Use&of&antenatal&ultrasound& Place&or&setting&for&birth&& Induced&abortion&rate& Travel&to&place&of&birth& Proportion&of&very&preterm&babies&born& without&NICU&& Cost' Per&capita&expenditure&on&Aboriginal&health&& & Maternal&Length&of&stay& Neonatal&length&of&stay& Cost&of&maternity&care&per&patient&

42

Figure 9. Distribution of Indicators by Domain

2.5$ Discussion$

This study identified twenty-six publications pertaining to the performance of maternity care systems serving northern and/or Indigenous populations. However, none of the health system performance measurement frameworks and very few of the 81 performance indicators identified were shaped by the circumpolar context, highlighting the need for future work in this area. Significant work has been done in Australia, New Zealand, and in some regions of Canada that has allowed for Indigenous health system performance measurement to be done with and by Indigenous organizations. It is not clear if the absent or fragmented nature of this work in other regions highlights differences in regional priorities or if other barriers have inhibited collaboration and inter-regional comparisons.

The nature and distribution of the indicators identified draws attention to a lack of incorporation of northern and Indigenous values and priorities. The overwhelming majority of indicators reflect physical health outcomes. A broader understanding of wellbeing is part of most Indigenous conceptualizations of health and should be considered as part of performance

43 measurement frameworks utilized circumpolar regions (86, 87). Sensitivity to cultural values is an important component of health system performance (51, 124) and while such a construct may be difficult to measure using existing performance measurement strategies, this is an area that deserves some exploration.

Performance reporting in circumpolar regions is associated with many additional challenges. Many well established MCH indicators focus on mortality, or other rare events. In the circumpolar context, where populations tend to be small and geographically isolated, a focus on rare events, such as neonatal or maternal mortality, presents significant technical and ethical challenges. Where these indicators are collected, the statistically necessary data aggregation renders the findings difficult to apply to regional health policy or quality improvement projects. While the need for such measures at the national level is appreciated, there is also a need for context specific performance indicators that are measurable and sensitive to change in smaller populations.

Another consideration in many circumpolar regions is the quality and availability of data itself. Because performance indicators are frequently selected based, in part, on the availability of high quality and reliable data, the lack of coordinated information systems and appropriate identification of Indigenous people is a significant impediment to performance measurement in circumpolar regions. The development of data systems that support Indigenous identification and thus allow for contextually appropriate performance measurement is necessary and will be discussed in more detail later in this thesis. A lack of attention to this process only contributes to the dominance of western medical values within the health system. In the context of low risk maternity care, this may perpetuate the emphasis of safety over health system responsiveness and in turn allow the persistence of services that have been shaped without Indigenous consultation.

Finally, the majority of indicators are defined and/or reported in such a way as to highlight disparities within and between populations and regions. For Indigenous peoples, the ongoing comparative reporting of differences and deficits perpetuates a public image of inferiority and may be further colonizing (9). Where possible, indicators that highlight resilience, adaptation, and successes in health care should be included.

44

2.6$ Limitations$

Due to the focus on indicators that were directly related to pregnancy, birth and the immediate postpartum and neonatal periods, this review only captures a small cross section of the performance measurement initiatives related to maternal and child health. Many important indicators of infant health are measured outside of the neonatal period and were thus excluded from this study. Disparities in infant mortality rates are an important topic in some circumpolar regions. However, as these disparities are magnified in the post-neonatal period, they are beyond the scope of our review. Furthermore, a broad range of social determinants of health may impact maternal and child health outcomes. Because of its scope, this review cannot exhaustively capture such important determinants in the North such as poor housing, food insecurity, mental health and the legacies of colonialism.

2.7$ Conclusion$

This review identified twenty-six publications and eighty-one health system performance indicators pertaining to maternity care in circumpolar regions. The majority of these publications were found in the grey literature through targeted hand searching of government websites. Indicators focused on birth or the antenatal period were much more prevalent than indicators focused on other stages of care. This imbalance partially reflects our inclusion criteria as many other child health indicators are available but are measureable only after the neonatal period. Indicators which represent health outcomes or health system effectiveness were also much more prevalent than indicators of accessibility, responsiveness or other domains of health system performance.

While efforts have been made to formulate Indigenous performance measurement frameworks in some regions, there is a marked lack of literature on the development of contextually specific performance measurements in circumpolar regions. This review demonstrates that, while most circumpolar health systems engage in performance reporting for maternity care, there is a need for future work in this area to reflect local values, priorities and challenges.

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Chapter$3$$ Delphi$Consensus$ 3$ Delphi$consensus$ 3.1$ Abstract$

Background: Performance measurement has become an increasingly popular tactic in the pursuit of improved health care quality, accountability and value for money. Meaningful performance measurement requires selected indicators to be scientifically robust and strategically focused. For circumpolar states, the selection of contextually relevant indicators presents a challenge. Indicators aligned with national strategies may ignore or conflict with the priorities of northern, remote, or Indigenous populations.

Objective: To identify performance indicators that are relevant to the evaluation of maternity care systems in circumpolar regions.

Methods: A modified Delphi approach was used to determine expert consensus on a set of circumpolar performance indicators for maternity care. Through a series of online questionnaires interspersed with structured feedback, participants rated 62 proposed indicators on a 7-point Likert according to four criteria (importance, relevance to the circumpolar context, validity, and reliability) and suggested additional indicators.

Results: A heterogeneous group of fourteen experts participated. Consensus was achieved after two rounds as measured by a Cronbach’s alpha of 0.87. Eleven indicators were rated highly on all four criteria. Twenty-nine additional indicators, largely focused on social determinants of health, responsiveness and accessibility, were identified as being important and relevant but did not reach the threshold for validity and reliability.

Conclusions: This approach was effective in selecting a set of contextually appropriate indicators for maternity care in circumpolar regions. A small number of indicators were considered to be both scientifically robust and relevant to the circumpolar context. Further research is necessary to fully understand and develop indicators of health system responsiveness and accessibility of care in circumpolar regions.

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3.2$ Introduction$

Among diverse health systems around the world, performance measurement and reporting have become increasingly popular tools in the pursuit of improved health care quality, accountability and value for money (1, 50). This trend has been associated with an explosion in the number of available health and performance indicators and a dramatic increase in the number of organizations collecting and reporting health performance information. In this environment, meaningful performance measurement requires selection of indicators that are both scientifically robust and strategically focused. Indicators must be valid, reliable, sensitive to change, and feasible to measure within the available resources. They must also be aligned with values and priorities of the system they are intended to evaluate (51, 124).

For circumpolar states, the selection of contextually relevant indicators presents a unique challenge. Their northernmost regions are characterized by vast distances, harsh climates, and low population densities, which make the delivery of high quality health care both challenging and expensive. These regions are also often populated by large proportions of Indigenous peoples who have long experienced and continue to experience substantial health inequities. Health system performance indicators are often selected by governmental agencies, health care leaders and administrators based on the strategic priorities of national governments. They are almost exclusively founded within a western biomedical paradigm and are aligned with the values and priorities of the dominant majority. Thus, selected indicators often do not address the needs and priorities of northern, remote, or Indigenous populations (chapter 2).

Within the realm of maternity care, the priorities of remote, northern communities are often dissimilar to those of more southern, urban centers. For example, travel for labour and birth is commonplace in many remote regions, where low population densities and challenges associated with retaining skilled providers puts the sustainability of rural birth programs at risk. The consequent practice of evacuating of women for labour and birth has substantial and well- documented impacts of women and communities. However, it is a uniquely rural/remote phenomenon and thus affects a minority of women. By contrast, practice variation with respect to obstetrical interventions, such as induction of labour, operative vaginal delivery and caesarean section, has positioned cost savings and improvements in patient safety through the reduction in unnecessary medical interventions as a central performance target. In many northern regions,

47 where the average maternal age is younger and the fertility rates are higher intervention rates are frequently very low and decreasing obstetrical intervention is less of a priority.

These differing priorities highlight the need to develop and utilize contextually appropriate performance indicators. This is all the more relevant for health systems serving Indigenous peoples as the importance of including Indigenous knowledge and stakeholder input in the selection of performance indicators as been well documented in the literature (86, 94). The objective of this study was to begin to fill this gap by identify contextually appropriate performance indicators for maternity care systems in circumpolar regions.

3.3$ Methods$

3.3.1$ Study$design$

A modified Delphi study was conducted among circumpolar experts in maternity care in order to achieve consensus in the identification of contextually relevant and scientifically robust perinatal performance indicators. The Delphi methodology was originally developed by the RAND Corporation in the 1950s for the purposes of predicting the impact of technology on warfare (125). Since then it has become widely accepted and frequently utilized in other fields. In health research, it is often used to understand the degree to which experts agree on a given subject and to achieve consensus. It is particularly useful in cases where the available evidence may be contradictory or insufficient (126). In health policy and health policy research, the Delphi method is frequently used for the development and selection of key performance indicators (KPIs) (67, 71-73, 127) as it allows stakeholders to select from many possible indicators where evidence regarding their use maybe limited or conflicting.

The key elements of the Delphi process are anonymity, iteration and controlled feedback using statistical aggregation of group responses. It thus involves the iterative administration of questionnaires in which structured feedback is provided to participants with each subsequent round. Through this process, individual responses tend to converge toward a consensus. In situations where Delphi panel group responses were able to be compared with a gold standard, median group responses have been found to move toward the true answer through successive rounds (128). The traditional Delphi method begins with an open-ended questionnaire, which

48 forms the basis of the subsequent questionnaires. In a modified Delphi process, the first round questionnaire is commonly based upon a review of the literature, avoiding the need for an open- ended questionnaire in the first round (129). This diminishes the total number of rounds required and the associated respondent burden.

The Delphi approach brings a number of advantages to this particular study. It allows participants to respond anonymously and for each participant’s input to be counted equally such that a small number of participants are unable to dominate the group response. In the case of inter-professional or historical power dynamics, this is particularly valuable. The use of electronic surveys also allows input from experts from distant geographical regions and time zones without the cost and time commitments required for multiple meetings. In order to achieve input from busy experts across the circumpolar world, this provides a very important advantage.

3.3.2$ Participant$selection$

Participants were selected using purposeful sampling as the quality of results produced by a Delphi panel depends on the expertise of participants (130). An advisory committee was assembled and included eight experts with extensive networks in maternity care or health systems performance. The six circumpolar members of the advisory committee each recommended colleagues for participation. Participants were required to be experts in the field of maternal health either through clinical work, research, health policy, and/or Indigenous Traditional Knowledge. Through purposeful sampling under the direction of the advisory committee, we sought to elicit input from a relatively heterogeneous group of experts to ensure that values and priorities of all major stakeholder groups were included.

As the Delphi method focuses on achieving consensus among the panel there is no need to achieve statistical power through recruitment of a minimum sample size. Further to this, there is no established standard for the number of participants on a Delphi panel (130) and review of published Delphi studies revealed significant heterogeneity in sample sizes from four to 171 participants (129). In the present study, a target sample size of 10-20 was chosen to balance the tradeoffs between decision quality and data manageability as well as between panel heterogeneity and the ability to achieve consensus.

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3.3.3$ Derivation$of$survey$items$

As has been described previously, survey items for the first round questionnaire were derived from an extensive literature review (130, 131). This review, which is discussed in detail elsewhere (Chapter 2), identified a total of 81 unique indicators. In order to limit survey respondent burden, this group of 81 indicators was reduced to 62 indicators through a first pass completed by three authors (RR, KM, SC) using the following exclusion criteria:

•$ Indicators deemed to be vague and for which no definition was provided in the literature

•$ Reproductive health indicators that were measurable only preconception or after six- weeks post partum

•$ Infant or child health indicators measurable only after the neonatal period

•$ Indicators that were deemed to be pregnancy related events unrelated to health care quality

•$ Composite indicators for which component parts varied widely in the literature

These 62 indicators were subdivided into the following domains according to a modified version of the OECD Health Performance Framework (132): Determinants of health, health outcomes, health system effectiveness, safety, responsiveness, accessibility, and cost.

3.3.4$ Response$scale$and$criteria$

Respondents were asked to rate each of the 62 indicators on a 7-point Likert-type scale ranging from 1 (strongly disagree) to 7 (strongly agree) according to the following four criteria:

•$ Importance: The level of concern of health care users or policy makers and the degree to which the indicator is susceptible to influence by the health system.

•$ Circumpolar relevance: The significance of the indicator in the circumpolar context.

•$ Validity: The degree to which the indicator measures what it intends to measure.

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•$ Reliability: The degree to which the indicator provides stable results across various populations, circumstances, and time points.

In order to allow participants to best assess the validity and reliability of each indicator, an information package was provided to respondents in addition to the survey. This package included brief descriptions of each indicator as well as some information regarding their validity, reliability, and current use where this information was available in the literature (Appendix 4).

In addition to rating each indicator according to the above-mentioned four criteria, two open- ended questions were included for each framework domain. These questions allowed participants to first, suggest any additional indicators that were not identified in the literature review and second, to provide any additional comments. Additional indicators that were suggested in the first round questionnaire were incorporated into the second round questionnaire. As these additional indicator suggestions were not identified in the literature, information on their use was not available and participants were asked to rate them based only on importance and circumpolar relevance.

3.3.5$ Survey$administration$

Both rounds of the electronic survey were created using the online platform FluidSurveysTM (http://fluidsurveys.com/). This platform was chosen for its flexibility in survey design and the ability to store data on Canadian servers. The first round survey included 62 indicators. Two researchers piloted the survey to ensure that questions were clearly worded and the suggested time for completion was appropriate.

Potential participants were first approached in person or by email. Interested participants were then contacted by email and provided with the indicator information package and a unique link to the first round survey. Responses to the first round survey were collected over a period of 41 days. Reminder emails were sent on days 8, 15, 22, and 29.

Responses were collected and tabulated to create the second round survey (Appendix 5). The second round survey included the same 62 indicators along with 17 additional indicators that were suggested by participants during the first round. Responses were collected over a period of 19 days. Reminder emails were sent on days 6, 13, and 17.

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3.3.6$ Data$analysis$

After collection of the first round data, measures of central tendency and dispersion (mean, median and standard deviation (SD)) were calculated for each indicator against each criterion. This information was included as feedback in the second round of the survey. Consensus among participants was determined by the degree of homogeneity, or internal consistency, demonstrated by participant responses. This was established using standardized Cronbach’s alpha. This method assumes that each indicator possesses a true level of each characteristic (importance, relevance, validity, and reliability) and thus, that each participant’s response to a given survey question represents a single measurement of that indicator’s importance, relevance, validity, or reliability. The internal consistency of responses can thus be considered a measure of agreement among participants. Published thresholds for an appropriate Cronbach’s alpha vary in the literature from 0.70 (133) for the determining the inter-rater reliability of a psychometric scale designed to differentiate between groups to 0.90 (134) for use of a diagnostic scale on an individual level. The threshold for determining consensus among experts on a Delphi panel is similarly variable but a cut-off of α ≥ 0.8 is frequently used (131, 135). Missing data was handled in three ways. Cronbach’s alpha was calculated for each round by the excluding missing data points, by substituting missing values with a neutral value, and by substituting missing values with the mean score for that survey item. All statistical calculations were performed using SAS University Edition.

3.3.7$ Selection$of$key$indicators$

After achievement of consensus, indicators for which ≥80% of participants selected 6 (agree) or 7 (strongly agree) on all four criteria were identified as a core set of indicators. A second set of indicators was also identified which included those for which ≥80% of participants provided a rating of 6 (agree) or 7 (strongly agree) on the criteria of importance and relevance but not on the criteria of validity and reliability.

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3.4$ Results$

3.4.1$ Achieving$consensus$

Twenty-one experts were invited to participate in the Delphi consensus process. Fourteen experts (67%) completed both questionnaires (Figure 10). Many, but not all, circumpolar regions and types of expertise were represented. The group included two representatives from Alaska, one from the Yukon Territory, two from the Northwest Territories, four from Nunavut, two from Greenland, and three who currently work in southern Canada but have significant expertise in Arctic or circumpolar maternal child health. Unfortunately, we not able to obtain a complete set of survey responses from Russian or European participants. The group included seven physicians (two obstetricians, three family physicians, one pediatrician, and one medical geneticist), four midwives, one nurse, and two public health researchers. Many of the participating clinicians currently work in research or health policy roles, allowing them to bring multiple areas of expertise to the panel.

Figure 10. Delphi Panel Participants

1 3

5 3 2

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Missing values accounted for 1.3% of all response options. The level of agreement among participants, as measured by standardized Cronbach’s alpha, is displayed in Table 3. After one round, Cronbach’s alpha was 0.79. After two rounds, the level of agreement was very good as demonstrated by a Cronbach’s alpha of 0.87. When missing values were replaced with a neutral score and given the value 4, Cronbach’s alpha was 0.86. When missing values were replaced with the mean value for the survey question, Cronbach’s alpha was 0.87. While the first value was ultimately chosen, the close results achieved by all three methods validates the finding of consensus among panel members.

Table 3. Level of Agreement Among Delphi Participants

Agreement&(Cronbach’s&α)&

Round& Participants& Missing*values* Missing*values* Missing*values* replaced*with* replaced*with* excluded* neutral*value*(4)* mean*value*

Round&1& 14* 0.79* 0.75* 0.79*

Round&2& 14* 0.87* 0.86* 0.87*

3.4.2$ Selected$indicators$

Once consensus had been reached, the mean, median, and standard deviation were calculated for each indicator. For each survey item, the proportion of responses indicating participant agreement (6 - agree or 7 - strongly agree) was also tabulated. The complete score breakdown for all indicators can be found in Appendix 6. Eleven indicators were rated highly on all four criteria by ≥ 80% of the participants (Table 4) and have been labeled the “core” indicators. Twenty-nine additional indicators received high ratings for importance and circumpolar relevance but lower ratings for reliability or validity, indicating that further study or development of these indicators may be required (Table 5). Six of the 29 additional indicators identified for consideration were those that were suggested by members of the Delphi panel in the first round. These are marked with an asterisk in Table 5.

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Table 4. Selected “Core” Performance Indicators

Ratings&≥&6&(%)& Indicator& Importance& Importance& Importance& Importance&

Determinants&of&health*

Teenage*pregnancy*&*birth* 93* 93* 93* 93*

Health&outcomes*

Anemia*in*pregnancy* 93* 93* 86* 86*

Stillbirths* 100* 93* 93* 93*

Perinatal*deaths* 100* 100* 100* 100*

Preterm*birth* 100* 100* 86* 86*

Maternal*Mortality* 100* 93* 100* 100*

Neonatal*mortality* 100* 100* 100* 100*

Low*birth*weight* 86* 93* 93* 93*

Effectiveness*

NICU*admissions* 100* 85* 100* 100*

Accessibility*

Birth*attendant* 93* 93* 93* 93*

Travel*to*place*of*birth* 92* 93* 86* 86*

Table 5. Selected “Additional” Performance Indicators Ratings&≥&6&(%)& Indicator& Importance& Relevance& Validity& Reliability& Determinants&of&health& Maternal*education*level* 93* 93* 93* 79* Domestic*violence* 93* 100* 21* 7* Smoking*during*pregnancy* 100* 100* 57* 50* Use*of*illicit*drugs*during*pregnancy* 100* 93* 21* 14* Use*of*alcohol*during*pregnancy* 100* 100* 29* 21* Breastfeeding*practices* 100* 100* 64* 43* Food*insecurity** 100* 100* U* U* Maternal*housing*(crowded*or*underUhoused)** 93* 93* U* U*

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Ratings&≥&6&(%)& Indicator& Importance& Relevance& Validity& Reliability& Health&outcomes& Diabetes*in*pregnancy* 93* 93* 86* 79* Postpartum*hemorrhage* 93* 93* 71* 50* Postpartum*depression* 86* 93* 29* 21* Congenital*anomalies* 86* 86* 86* 79* Small*for*GA*infants* 100* 100* 86* 79* Effectiveness& Neonatal*readmission*to*hospital* 86* 86* 93* 79* Safety& Births*without*obstetric*intervention* 93* 86* 64* 64* Transfers*for*obstetrical*indications** 92* 85* U* U* Unplanned*births*in*the*community** 100* 92* U* U* Responsiveness& Characteristics*of*care*providers* 92* 93* 69* 69* Cultural*competency* 92* 86* 46* 38* Patient*reported*unfair*treatment*based*on* 92* 86* 57* 29* ethnicity* Patient*reported*support*during*labour*and* 100* 86* 50* 50* birth* Presence*of*breastfeeding*support*programs* 92* 86* 29* 14* Patient*reported*satisfaction*with*care* 100* 100* 50* 36* Accessibility& Frequency*and*timing*of*antenatal*care* 93* 93* 79* 71* Use*of*antenatal*ultrasound* 86* 86* 93* 79* Rate*of*induced*abortions* 86* 86* 86* 79* Postpartum*visits* 100* 86* 71* 64* Maternity*care*provider*in*patient’s* 100* 93* U* U* community** Maternity*care*provider*who*speaks*the*same* language/is*from*the*same*culture*as*the* 92* 93* U* U* patient** **Indicators*suggested*by*members*of*the*Delphi*panel*in*the*first*round* * 3.5$ Discussion$

This study utilized a modified Delphi approach to select performance indicators for maternity care in circumpolar regions. This approach proved to be an effective method to generate input from a geographically dispersed and professionally diverse group of stakeholders. Consensus

56 was achieved after two rounds of the Delphi process as determined by a standardized Cronbach’s alpha of 0.87.

A core set of eleven performance indicators was selected based on high ratings according to all four selection criteria. In keeping with the findings of the scoping review (Chapter 2), a significant number of these core indicators reflect physical health outcomes. This finding is likely the result of ease of measurement as well as the substantial body of global experience that exists in the measurement of these health outcomes. The core set of indicators includes four indicators that represent non-physical health domains of health system performance. These include teenage pregnancy, admissions to the neonatal intensive care unit (NICU), presence of a skilled birth attendant, and travel to place of birth.

Teenage pregnancy/birth was reported in a number of literature sources included in the scoping review and a number of different definitions were identified. This is likely a reflection of the very high teenage birth rates in many circumpolar regions. The most commonly reported definition is the teenage birth rate (total number of births per 1000 women aged 15-19). Early childbearing is known to be associated with an increased risk of preterm birth, growth restriction, perinatal mortality, and congenital anomalies (117). Younger mothers are more likely to experience low socioeconomic status (SES), inadequate prenatal care and poor nutrition (136). The teenage pregnancy rate (total number of pregnancies per 1000 women aged 15-19) is an alternative indicator worth considering. The majority of teen pregnancies are unplanned (137). Thus, while capturing pregnancies that end in miscarriage or therapeutic abortion presents additional data requirements this alternative definition does permit broader assessment of adolescent reproductive and sexual health.

The presence of a skilled birth attendant at every birth is an important indicator of access to health care and is frequently reported in low and middle-income countries. In high-income countries, the type of birth attendant is more frequently reported. These include obstetricians, family physicians, midwives, nurses or nurse practitioners. The availability of each type of provider and the ability of patients to choose their provider varies significantly by region. In rural and remote regions, patients may have little or no choice of birth attendant and nurses play an increasingly large role in the delivery of care in rural and remote regions. Births attended by midwives are less likely to be associated with obstetrical interventions than births attended by

57 physicians but when adjusted for case mix, neonatal outcomes are similar between types of providers (44, 138).

Travel is a major issue in the delivery of care in circumpolar regions. Low population density and attrition of rural care providers has resulted in a practice of routine evacuation of pregnant women for labour and birth. In Canada, this practice has been shown to have detrimental effects on women, their families and the wider community without corresponding improvements in health outcomes (45-47). The definition identified in the literature captures the proportion of women who report having to travel >100km from their home to their place of birth. In circumpolar regions, women frequently have to travel much farther than 100 km and so the Delphi panel members suggested other possible ways to capture the concept of travel for birth. The suggested definitions included the proportion of women required to leave the community for birth, the proportion of women required to leave the region for birth and the “number of days away from home”. The validity, reliability, and data sources required for each of these definitions should be further investigated and compared in order to ensure the best indicator for travel is utilized.

Twenty-nine additional indicators were identified for further consideration and provide some important insight. These indicators, shown in Table 5, received high ratings on the basis of importance and relevance but received mediocre or poor ratings on the basis of reliably and validity. As anticipated, this group of indicators includes a much greater focus on social determinants of health, and indicators of health system responsiveness and accessibility. Three major themes are represented within this second group of indications. These include the need for increased focus on the social determinants of health, the impact of travel, and the importance of cultural competency at both provider and system levels.

The impact of the social determinants of health in circumpolar regions is demonstrated by the identification of eight social factors that are important and relevant to the health and wellbeing of northern mothers and their newborns. These include maternal education level, domestic violence, substance use in pregnancy (including tobacco, alcohol, and illicit drugs), breastfeeding practices, poor housing, and food insecurity. The impact of travel is represented in the wish to measure transfers for obstetrical indications, unplanned community births, and the presence of community level maternity care providers. While cultural competency is a complex construct,

58 important aspects may be captured by measuring characteristics of care providers (specifically the proportion of Indigenous care providers), the presence of organizational structures focused on cultural competency, patient reported experiences of unfair treatment based on ethnicity, patient reported satisfaction with care, and the proportion of women who have access to a maternity care provider who speaks their language and/or is from their culture.

It is evident that many of the concepts and indicators identified as important and relevant to the circumpolar context diverge from those that are commonly utilized. Many of the indicators identified by the expert panel have not been studied or utilized extensively. Thus, their definitions are often vague and information regarding their scientific properties is thus incomplete or unavailable. Furthermore, because these indicators have not been previously identified as performance measurement priorities, existing data sources may not support their measurement. The findings of this project present an opportunity for health system planners and policy makers to support the use of contextually specific indicators and to engage stakeholders in their selection and development. It also points to the importance of supporting and developing health surveillance information systems that allow for appropriate identification of Indigenous people in within the health care system.

3.6$ Limitations$

The authors recognize some limitations of this study. Unfortunately, we were unable to obtain Delphi survey responses from Nordic or Russian participants. While maternity care systems in these regions share many characteristics and challenges with their circumpolar neighbors in North America and Greenland, the lack of representation from these regions may limit the generalizability of our findings.

An online survey based approach is a common method of indicator selection and was effective in achieving consensus. However, it does have some limitations in the context of this project. First, the survey and related communication was conducted only in English. While many clinicians, researchers and health policy makers in circumpolar regions are capable of communicating in English, this may have limited the potential pool of Nordic, Russian, and Greenlandic participants. Furthermore, because performance measurement efforts are typically centralized in

59 southern centers, northern capacity and expertise is limited to a small number of exceedingly busy people. As a result, we had difficulty identifying Indigenous circumpolar maternity care experts who had the time to participate.

Finally, indicators were presented to the Delphi panel in isolation from one another, not as a complete set within a circumpolar framework. As a result, there is some redundancy among the identified indicators. For example, stillbirth and perinatal death were both selected. As perinatal death includes both stillbirth and early neonatal death, any efforts to operationalize this set of indicators may require eliminating such redundancy. Similarly, some concepts might be captured by a number of related indicators. For example, is likely that an increase in the proportion of Indigenous care providers would correspond on the whole to increased cultural competency and decreased patient reported experiences of unfair treatment based on ethnicity. Development and validation of a circumpolar health performance framework or region-specific health performance frameworks would allow this set of indicators to be further refined in order to ensure comprehensiveness across the domains of health and health system performance while simultaneously minimizing redundancy.

3.7$ Conclusion$

This study was successful in identifying 11 potential indicators for maternity care in circumpolar regions. Twenty-nine additional indicators were identified for further consideration as they represent indicators that are both important and relevant but for which insufficient evidence exists to support their scientific robustness. The findings of this study confirm that circumpolar maternity care priorities differ substantially from those identified by southern decision makers and knowledge users. Further evaluation and refinement of the suggested indicators is warranted in order to develop an appropriate performance measurement strategy for the circumpolar context.

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Chapter$4$$ Knowledge$Translation$&$Community$Feedback$ 4$ Knowledge$translation$&$community$feedback$ 4.1$ Introduction$

There has been increasing recognition of the importance and inherent value of Indigenous knowledge and a call by Indigenous health research experts, research ethicists and northern research licensing boards to incorporate Indigenous knowledge and community consultation into the research process (86, 139-142). As a method generated from and embedded within western knowledge systems, the Delphi approach assumes comfort with computer-based data collection, the value of western medicine and the ability of western measurement approaches to capture local priorities. Used in isolation, it cannot adequately collect input from all Indigenous stakeholders and does not allow the creation of true and equal partnerships between western health researchers and Indigenous knowledge holders. In order to include Indigenous knowledge holders in the research process and begin to validate the study findings in the context of Indigenous knowledge, a knowledge translation and community feedback workshop was organized. The approach and key themes identified will be discussed briefly here.

4.2$ Approach$

A workshop was held in Yellowknife, NT which allowed us to share preliminary findings of the project with key stakeholders, receive feedback on the project findings and identify further priority areas for research and health policy in circumpolar maternity care.

4.2.1$ Incorporating$Indigenous$knowledge$

Indigenous knowledge systems are epistemologically distinct from western health research. While there are many important differences between Indigenous and western ways of knowing and doing, three aspects are particularly relevant to this project. First, while Indigenous peoples around the world have different traditions and practices with respect to health and wellness, they often share common underlying values. These are centred around a holistic view of health and wellness where relationships between the body, mind, emotions and spirit are essential (87, 143). Second, Indigenous knowledge systems do not separate the acts of knowing and doing as is

61 common to positivist health science research and related knowledge translation approaches. Finally, story telling and oral histories are important channels for knowledge sharing, particularly in intergenerational interactions (144, 145).

We sought to incorporate both Indigenous and western knowledge and values into the workshop through the use of a First Nations framework. Etuaptmumk, or two-eyed seeing, is a framework developed by Elder Albert Marshall of the Mi’kmaw Nation (146). In Etuaptmumk, western and Indigenous ways of knowing are valued equally. Utilizing an analogy of two eyes, it suggests that no single worldview is independently complete but that it is possible to utilize the strengths of both western and Indigenous worldviews simultaneously. This principle has been previously applied to health research including a consensus-based methodology to identify a set of core values around health systems stewardship in a circumpolar context (147).

4.2.2$ Workshop$participants$&$activities$

Workshop participants included a multidisciplinary group of maternity care stakeholders from circumpolar regions. All Delphi panel participants (Chapter 3) working or residing full time in circumpolar regions were invited to attend. Indigenous knowledge holders were sought out through existing networks of research team members and through affiliations with circumpolar or Indigenous organizations.

The group included seven in-person participants, one videoconferencing participant, and four members of the research team. A wide variety of expertise was represented including three Indigenous Elders (two of whom are also traditional midwives), one patient from a remote First Nations community, one physician, two registered midwives and one registered nurse. Two of the participating clinicians also have experience in health policy and public health research. Geographical representation included all three Canadian Territories and Greenland. The participants were Inuit, Dene, Métis, and non-Indigenous northerners.

The workshop was a full day event held in Yellowknife, NT, Canada. The workshop was jointly developed and co-facilitated by the writer and a First Nations Elder and traditional midwife. The workshop agenda can be found in Appendix 7. The morning included a short presentation on the findings of the scoping review (Chapter 2) and the Delphi panel (Chapter 3). This included a discussion of health systems performance measurement, particularly as it pertains to maternity

62 care and to the circumpolar context. Preliminary findings of the scoping review and Delphi approach were then presented.

The second half of the session consisted of a talking circle facilitated by a Dene Elder and traditional midwife. Talking circles are used for teaching, learning and healing in many Indigenous civilizations. They allow participants to share knowledge and experiences through discussion where the each participant is valued equally (148-150). In the workshop talking circle each participant had the opportunity to share stories, experiences, scientific evidence, or any other knowledge they felt was appropriate in relationship to the project.

4.3$ Findings$

The success of this workshop demonstrated that with open communication, good working relationships, flexible research methods and strong overarching shared goals it is possible to bring together Indigenous and non-Indigenous stakeholders in order to develop a collaborative approach to performance measurement for northern maternity care systems.

A detailed thematic analysis of the workshop content is beyond the scope of this project and will be included in future work. However, the workshop discussion centered around three broad ideas, which are also reflected in the Delphi panel findings. These include the importance of a holistic view of health and wellness, improving accessibility of maternity care, and the importance of including Indigenous knowledge as well as community consultation and feedback at all levels of health system planning and evaluation.

The importance of a holistic view of health and wellness is common to many recommendations that apply to Indigenous peoples’ health. For some of our workshop participants, this was reflected in discussions about the need for more education, support and guidance for girls and women across the life course. In Dene teachings, for example, the experience and health issues associated with pregnancy and birth cannot be extracted from the continuum of roles that exist throughout womanhood (151). There also exists an important focus on balance between the physical, mental, emotional, and spiritual health of an individual and between the wellness of the individual, family, community, and nation (152). Teenage pregnancy was a particularly important indicator as this issue had touched almost all participants either personally or professionally. Participants commented on the need for increased access to holistic, culturally

63 appropriate sexual and health education in schools, communities and homes. The group also discussed the conflict that is often present for young women who must be evacuated for birth. While they may have more family and community support at home, the opportunity to travel to a bigger center is attractive to many young women.

Access to local maternity care was also a significant point of discussion. Participants pointed to the maternity programs in Nunavik as demonstration of a successful model for safe, local birth, which also includes the training of Inuit midwives in their own communities and regions. Many in the group also highlighted access to midwifery. Increased training and licensing of midwives was discussed both in the context of traditional Indigenous midwifery but also more widely as practice that fosters a holistic view of health and provides continuity of care.

Finally, the themes of language, culture and the integration of Indigenous Knowledge, community consultation and feedback were emphasized throughout the workshop. It was observed that while patient consultation and feedback mechanisms do exist within some circumpolar health care settings, they are often superficial. The importance of collaborating to balance Indigenous knowledge and western biomedicine was reinforced. The group supported initiatives focused on supporting and training Indigenous health care workers and retaining skilled providers in the North.

The themes discussed at the workshop are supported by a significant body of literature on Indigenous health and on birth in rural and remote communities. The workshop discussions echoed the findings of the Delphi consensus process, providing validation that the expert panel was able to adequately identify and agree upon relevant circumpolar maternity care indicators.

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Chapter$5$$ General$Discussion$ 5$ General$discussion$

This scoping review was successful in identifying existing performance indicators for maternity care systems serving women in circumpolar regions. The Delphi consensus approach was able to provide important information on which indicators should be considered for future use. Finally, we were able to obtain some community feedback to begin the process of validating the findings of the Delphi approach in the context of Indigenous priorities, values, and knowledge.

5.1$ Existing$performance$indicators$

An extensive scoping review (Chapter 2) identified 26 heterogeneous publications that reflected circumpolar or Indigenous performance measurement efforts for maternity care. A significant proportion of the publications identified were from Canada and Australia. This finding is likely a representation of the fact that most performance measurement efforts in the Nordic regions are coordinated pan European or multi-country efforts, resulting in a more streamlined portfolio of publications. The Canadian publications, by contrast, were typically focused on one province, territory, region or population and were thus much more fragmented.

Eighty-one unique indicators were identified in the scoping review. The majority of these indicators represented physical health outcomes or health care processes and many are focused on reducing obstetrical intervention. A minority of the indicators focused on the health of Indigenous women or on the performance of northern, rural, or remote health systems. These findings confirmed our hypothesis that while most circumpolar regions do participate in performance measurement and reporting for maternity care, existing performance measurement efforts are typically focused on priorities that are identified by decision makers in large, southern, urban centers.

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5.2$ Selected$performance$indicators$

5.2.1$ Core$indicators$

The Delphi consensus approach was successful in selecting a core group of performance indicators. However, as discussed, this indicator set is dominated by physical health outcomes. For the most part, this likely reflects the fact that physical health outcomes provide the simplest opportunity for collecting high quality data and standardizing definitions for the purposes of comparison. However, it may also reflect the fact that these physical health outcomes have historically dominated the priorities of decision makers at the exclusion of indicators that reflect other important domains of health care quality such as accessibility and responsiveness.

5.2.2$ Additional$indicators$

Importantly, our approach effectively applied importance and relevance as gateway criteria and was thus also able to identify a set of indicators that are both important and relevant to the circumpolar context but that did not demonstrate adequate scientific robustness. This additional indicator set can be a considered a proxy for the priorities of circumpolar maternity care experts when considerations of measurement and data challenges are eliminated. While this approach does not provide information that can result in immediate measurement changes, it allows the possibility of developing and improving northern data collection mechanisms to reflect northern values and priorities.

In addition, examination of Table 5 reveals that not all indicators identified for further consideration should be understood to be equal. Many of these indicators were close to the cut off of 80% expert approval. A lower threshold, or a larger expert panel may have pushed some of these indicators into the “core” indicators category. For example, maternal education level was rated as a highly important, relevant, and valid social determinant of health and was close to the cut-off for reliability. Low maternal education is a very significant determinant of health in circumpolar regions. High school graduation rates in the Canadian territories are consistently lower than the Canadian average and are as low as 42.4% in Nunavut (37). Low maternal educational attainment is associated with increased risk of preterm birth and both maternal and perinatal mortality (153). It also has implications beyond pregnancy and childbirth as it affects other determinants such as health behaviours and preventative service use. Of course, education

66 does not act in isolation and its effects can be difficult to assess independently of other factors such as income (153). This additional group of indicators also contained a number of health outcomes and markers of accessibility that approached the study threshold of 80% including small for gestational age infants, congenital anomalies, gestational diabetes, induced abortion rate, use of antenatal ultrasound, and frequency and timing of antenatal care.

5.2.3$ Indicator$redundancy$

Both the scoping review and the Delphi process considered indicators individually, rather than as representations of interrelated domains of health and health system performance. Thus, both the core and additional indicator sets include some notable redundancy. In order engage in efficient performance reporting, redundant indicators should be identified and streamlined. Among the indicators identified in this study there is redundancy in four different areas: Fetal and neonatal deaths, gestation and size at birth, transfers for birth, and cultural competency.

Most obviously stillbirth, neonatal mortality and perinatal mortality represent closely related phenomena. Stillbirth is synonymous with fetal death. While regional definitions and reporting strategies vary for international comparisons, the WHO recommends defining stillbirth as fetal death after 28 weeks of gestation (or >=1000g where GA is not available). Causes of stillbirth are multiple and include congenital anomalies, placental pathologies including abruption, infection, and other complications of pregnancy. However, a large proportion (30-50%) of stillbirths are idiopathic (154).The neonatal mortality rate includes all deaths from birth to 28 days of life per 1000 live births at or after 24 weeks GA (or greater than 500g if GA is not available). Embedded within this definition are early neonatal deaths, which occur between birth and seven days of life. Neonatal morality is thought to be an indicator of newborn care as well as a reflection of prenatal and intra-partum care. The most common causes of neonatal death in high-income countries are congenital anomalies and complications secondary to prematurity. However, rates of neonatal mortality are also heavily influenced by access to adequate obstetrical care. About one third of neonatal deaths in Europe are babies born before 28 weeks of age (117). Heterogeneity of birth and death registration at early gestations between regions makes international comparisons before 24 weeks quite difficult. Differences in access to abortions for congenital anomalies and inter-regional variations in care of very preterm infants may also influence reliability of reporting. The perinatal death rate is essentially a compound indicator,

67 which includes stillbirths and early neonatal deaths. It has traditionally been used as a measure of the quality and availability of antenatal and intra-partum care. Low birth weight, preterm birth, and rate of small for gestational age births represent similarly related phenomena.

Transfers for obstetrical indications, unplanned community births, and the proportion of women accessing a local provider are all examples of indicators that reflect the significant role of travel in circumpolar health systems. Similarly, indicators of organizational cultural competency, the proportion of patients who report unfair treatment based on ethnicity and the proportion of women able to access a provider of the same culture all represent aspects of cultural competency and patient experience with care. While these two groups of related indicators do not demonstrate the same redundancy in terms of measurement requirements as do the other indicators discussed, the financial and human resource requirements of measuring and reporting on each of these indicators independently would make prioritization of one of these indicators a prudent decision.

5.3$ Key$priorities$$

The findings of the Delphi consensus approach and the community feedback workshop reinforce much of the existing literature on rural and remote maternity care and on priorities for Indigenous health. The themes that emerged from both the Delphi process and the workshop are intimately connected and are depicted in Figure 11 as they relate to the OECD framework. None of these priorities are, at present, adequately captured in northern health system development or evaluation.

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Figure 11. Connecting Themes at all Stages

In examining the 29 additional indicators that were identified in the Delphi study based on importance and circumpolar relevance, three major themes emerge as priorities. These are the social determinants of health, travel for care, and cultural competency at both system and provider levels. These themes can be mapped to domains of the OECD health performance framework as shown in Figure 11. The themes that emerged from the feedback workshop, which are discussed in detail in Chapter 4, are also closely related to these domains but contain some additional concepts. Indigenous views of health and wellness share a central tenant of holism. The interconnectedness of all things and the understanding of health as a state of wellbeing beyond the simple absence of disease are central ideas that can be partially captured through the social determinants of health. However, viewing performance measurement through an Indigenous conceptualization of health and wellness also requires being responsive to the needs and expectations of the population and is embedded in cultural competency. Similarly, the incorporation of Indigenous Knowledge, and support for self-governance and self-determination in health system design and evaluation are central components in operationalizing health system

69 responsiveness in the circumpolar context. Health system responsiveness can be viewed as both a means to achieving improvement in health outcomes as well as an important goal in and of itself. This project demonstrates that if health system responsiveness is truly a priority, then it is imperative to create a performance measurement strategy that both measures and demonstrates responsiveness to populations outside a dominant national majority.

5.4$ A$case$study$–$applying$the$findings$to$the$NWT$

In order to apply the findings of this project in a given region, it is important to examine currently reported indicators in light of the findings of this project. This will allow us to begin to answer two important questions: First, are resources currently being utilized to report indicators that have been rated as not relevant in circumpolar regions? And second, are any of the suggested indicators measurable using existing data sources? As an example, we will apply the findings to one Canadian territory.

The Northwest Territories (NT or NWT) is a geographically large territory in northwestern Canada with a population of approximately 44 000 (25). Approximately half of the territory’s population resides in the capital city of Yellowknife. Maternity care in the territory is largely centralized with births occurring in Yellowknife, Inuvik, Fort Smith, and Hay River. Women residing in Yellowknife typically receive prenatal care from family physicians and deliver at Stanton Territorial Hospital where obstetrical consultation and surgical services are available. Women residing outside of Yellowknife frequently receive prenatal care in or close to their communities from nurses or visiting physicians. At 36-38 weeks, women leave their communities and travel to Yellowknife or Inuvik. They reside at a boarding home or hospital throughout the last few weeks of pregnancy and the immediate post-partum period before returning home. Care in Inuvik is provided by family physicians with emergency surgical services available from local GP surgeons. Hay River and Fort Smith provide midwifery services and are able to accommodate low risk births in the communities.

At present, there is no dedicated perinatal database available in the territory. Perinatal surveillance and performance reporting for maternity care services are accomplished through a combination of vital statistics, and CIHI reporting. Some general health system performance

70 measures are reported as part of a broader territorial performance framework but none of these indicators reflect maternity care performance (155). A new territorial framework for early childhood development does include some items relevant to prenatal care but outcome data is not yet being collected (156, 157). The indicators reported by CIHI (119, 158) are shown in Table 6 along with the expert panel’s rating of circumpolar relevance.

Table 6. CIHI Maternity Care Indicators

Mean&expert& rating&for& Indicator& Indicator&description& circumpolar& relevance& (scale&1&to&7)&

Obstetric* •$RiskUadjusted*rate*of*urgent*readmission*for*the*obstetric*patient*group*as* readmission*rate* measured* by:* Observed* number* of* readmissions* ÷* Expected* number* of* *5.57* readmissions*×*Canadian*average*readmission*rate*

Obstetric*trauma* •$Rate*of*third*or*fourth*degree*lacerations*degree*or*greater*for*instrumentU 5.29* with*instrument* assisted*vaginal*deliveries.*

Breastfeeding* •$Number*of*women*age*15*to*55*who*had*a*baby*in*the*last*five*years*who* initiation** initiated*breastfeeding*their*last*child,*divided*by*the*number*of*women*age* 6.79* 15*to*55*who*had*a*baby*in*the*last*five*years*

Assisted*delivery* •$Number*of*vaginal*deliveries*assisted*by*means*of*forceps*extraction,* rate*among* vacuum*extraction*or*a*combination*of*the*two)*÷*(Number*of*vaginal* vaginal*deliveries* deliveries)*×*100* 4.86* * •$Vacuum*and*forceps*assisted*deliveries*are*also*reported*separately*

Caesarean*section* •$Total:*the*rate*of*CUsections*per*100*deliveries* rates* •$Primary*caesarean*section*rates*are*also*reported*for*all*women*as*well*as* for*women*under*35*years*of*age*and*women*35*years*of*age*or*older* 5.31* •$Repeat*caesarean*section*rate* •$Low*risk*caesarean*section*rate*U*defined*as*a*singleton*term*cephalic* pregnancy*for*women*without*placenta*previa*or*previous*caesarean*section*

Epidural*rates* •$For*vaginal*deliveries* 5.00* * •$For*all*deliveries**

Low*birth*weight** •$Proportion*of*live*newborns*with*a*birth*weight*between*500*grams*and* 2,499*grams,*inclusive* 6.43* •$Proportion*of*live*newborns*with*a*birth*weight*less*than*2500*grams*

Preterm*birth** •$Proportion*of*live*newborns*with*a*gestational*age*of*less*than*37*weeks* 6.90*

Midwives*(per* •$Number*of*midwives*there*are*for*every*100,000*people* 100*000* N/A* •$This*is*not*reported*for*the*Canadian*Territories* population)*

Small*for* •$Proportion*of*live*singleton*newborns*with*a*valid*birth*weight,*gestational* 6.79* gestational*age** age*and*gender*who*are*classified*as*SGA*at*birth*

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Of the indicators reported in the Northwest Territories, only four (breastfeeding, low birth weight, small for gestational age, and preterm birth) were selected by the circumpolar expert panel. It is immediately evident that the CIHI maternity care indicators reported in the Northwest Territories (and throughout Canada) are largely focused around decreasing obstetrical interventions. The goals of decreasing epidural rates, caesarean section rates, assisted vaginal delivery rates and associated perineal trauma are all important measures of appropriate, safe and efficient care. However, the rates of obstetrical interventions are already relatively low in northern regions making these indicators much less relevant. The proportion of young, multiparous mothers is much greater in the Northwest Territories and other circumpolar regions than it is in southern regions. These demographic factors dramatically influence the need for such obstetrical interventions. Furthermore, the focus on decreasing interventions implies that less intervention is always better. Of course, all of these interventions can and should be used judiciously under appropriate clinical circumstances. Without evidence based benchmarks for different populations, the utility of these indicators plummets.

The second important question that this case study explores is whether or not any of the suggested indicators might be relatively easy to adopt in the Northwest Territories as a first step in contextually relevant performance reporting. Based on the findings of the Delphi consensus and the subsequent input of stakeholders from the region, four indicators might be considered: Teenage pregnancy, patient satisfaction with care, travel to place of birth, and unplanned community births.

First, teenage pregnancy and birth is a prominent determinant of maternal and child health in the territory. Teenage pregnancy rates have been part of prior territorial performance reporting efforts making adoption of this indicator relatively straightforward. The most recent report, published in 2011 (159) demonstrates a steady decrease in teenage pregnancy up until 2007 but more recent data is not publicly available.

Patient satisfaction with care as another indicator that already has some foundation in the region as a superficial measure of patient satisfaction is included in general public performance measures (160). The construct of patient satisfaction is incredibly complex and its measurement can only be reliably obtained through population-specific, validated tools. However, the presence of an existing patient reported outcome (PRO) tool in the Northwest Territories might provide a

72 useful starting point for appropriately capturing patient satisfaction and feedback within the maternity care system.

Travel to place of birth is another critical factor in the delivery of maternity care in the region. The indicator definition included in the scoping review was identified from the Canadian Maternity Experiences Survey (MES) (44). The survey asked women if they travelled to another city, town or community to give birth, how far they were required to travel (km) and the duration of time that they were away from home. However, the MES did not include women living on First Nations reserves and thus likely provides a significant underestimate of the proportion of women required to travel for birth in Canada. In Manitoba, the proportion of women required to travel for birth is also reported and is measured in one of two ways, the proportion of women who have had to leave their regional health authority for delivery or by measuring the direct distance from the centroid of the postal code of residence to the centroid of the birth facility (161). In the Northwest Territories, where each community is represented by a unique postal code, the latter measurement may be a reasonable consideration.

The number of unplanned community births is another indicator of the ability of the system to provide care in remote regions. Unplanned community births may be related to premature labour, travel related barriers, or a woman’s choice to remain in her community despite a lack of appropriate services. These unplanned community births would typically occur at the single community nursing station and would be documented by the nursing station staff. It should be considered that the number of unplanned community births is likely small and would likely present statistical challenges in generating robust population estimates. As with other rare outcomes such as maternal mortality (162, 163) and neonatal mortality (58), it may be more useful to approach this indicator using confidential inquires rather than lone numerical reporting in order to obtain the granular data necessary for identifying causes of death and improving care.

5.5$ Implications,$opportunities,$&$obligations$

5.5.1$ Information$needs$

Health system performance measurement is only as effective as the data sources that support it. The measurement and reporting of the performance indicators discussed in this thesis will

73 require a combination administrative data, patient reported outcome or survey data as well as the prospective collection of clinical information through perinatal or other health surveillance databases. Table 7 outlines the potential data sources for each of the indicators identified in the thesis. In Canada, vital statistics data contains a number of items related to pregnancy and birth including the date and place of birth, the infant’s sex, birth weight and gestational age, the parents' age, marital status and birthplace, the mother's place of residence, parity and the type of birth (singleton or multiples) (164). Thus, national vital statistics and health administrative data provide many opportunities for measurement and reporting of the suggested indicators. Dedicated perinatal databases provide a wealth of additional information in some provinces such as British Columbia and Ontario but despite efforts to put such tools in place (165) none of the territories have an existing perinatal database. Health surveys, such as the Maternity Experiences Survey and the First Nations Regional Health Survey, can provide valuable information on patient experiences but ensuring adequate representation of Indigenous communities in survey based data collection is challenging. The First Nations RHS is particularly important in its contribution to health data that is both important and relevant to First Nations people and an excellent example of Indigenous information governance and data management. However, in many other surveys, such as the MES, individuals living on First Nations reserves often excluded. This survey also excluded women who were incarcerated or not living with their infant at the time of the survey. These are significant limitations in the ability of national surveys to speak to the experiences of women for whom the health system is arguably the most needed and to whom it is the least responsive.

As displayed in Table 7, many of the indicators may be derived from more than one data source. Specifically, some of the core content collected in provincial perinatal databases can be derived directly from patient charts (depending on how the database is populated) or can be garnered through vital statistics or administrative data. Development of performance reporting strategies for maternity care in northern regions will require a detailed look at the data quality, and the validity and reliability of reporting indicators from each of these sources. It will also require the prioritization and investment in data collection and infrastructure where limited or inadequate sources exist. In the Canadian north, the systematic collection of perinatal data would be an enormous step towards supporting the improvement of care through research and performance measurement. Although it is not without expense and challenges, the implementation and

74 appropriate use of an integrated electronic medical record (EMR) may be an important adjunct to the development of an effective health surveillance system.

Table 7. Potential Data Sources for Selected Indicators in Canada

Data&sources&

Indicator& Administrative& Perinatal&data& Patient&reported& Vital&statistics& health&data& collection& (survey)&data&

Selected&indicators& Teenage*birth* x* * * * Anemia*in*pregnancy* * x* x* * Stillbirths* x* * x* * Perinatal*deaths* x* x* x* * Preterm*birth* x* * * * Maternal*Mortality* x* * * * Neonatal*mortality* x* * * * Low*birth*weight* x* * * * NICU*admissions* * x* * * Birth*attendant* * x* * * Travel*to*place*of*birth* x* x* x* x* Additional&Indicators&& Maternal*education*level* x* * x* x* Domestic*violence* * * x* x* Smoking*during*pregnancy* * * x* x* Use*of*illicit*drugs*during*pregnancy* * * x* x* Use*of*alcohol*during*pregnancy* * * x* x* Breastfeeding*practices* * * * x* Food*insecurity** * * * x* Maternal*housing** * * * x* Diabetes*in*pregnancy* * x* x* * Postpartum*hemorrhage* * x* x* * Postpartum*depression* * x* x* * Congenital*anomalies* * x* x* *

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Small*for*GA*infants* x* x* x* * Neonatal*readmission*to*hospital* * x* x* * Births*without*obstetric*intervention* * x* x* * Transfers*for*obstetrical*indications** * * x* x* Unplanned*births*in*the*community** * * x* x* Characteristics*of*care*providers* * * * x* Cultural*competency* * * * x* Patient*reported*unfair*treatment*based* on*ethnicity* * * * x* Patient*reported*support*during*labour* and*birth* * * * x* Presence*of*breastfeeding*support* programs* * * * x* Patient*reported*satisfaction*with*care* * * * x* Frequency*and*timing*of*antenatal*care* * x* * x* Use*of*antenatal*ultrasound* * x* * * Rate*of*induced*abortions* * x* * * Postpartum*visits* * x* * * Maternity*care*provider*in*patient’s* community** * x* * x* Maternity*care*provider*who*speaks*the* same*language/is*from*the*same*culture* * * * x* as*the*patient**

The collection and reporting of health information in the Canadian Territories (and in many other regions of Canada) is complicated by two major issues. First, small populations present challenges associated with anonymity and statistical rigor. Reporting of rare outcomes may require aggregation of such large geographical regions or timeframes as to render the data meaningless for targeted health care improvement. For certain outcomes, such as maternal and neonatal mortality, the use of detailed case audits for the purpose of quality improvement may provide an important adjunct to numerical reporting. In addition, in regions where small, widely dispersed communities are the norm, improving the use of process indicators may provide complementary information.

Secondly, there is a marked lack of Indigenous specific identifiers within Canadian data sources (9, 166). While there is significant jurisdictional complexity in the delivery of health care to

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Indigenous people in Canada, it is by and large regarded as a federal responsibility. There have thus been limited efforts to develop Indigenous data systems within provincial and territorial health surveillance networks. Furthermore, federal health surveillance has focused primarily on First Nations people living on reserve and on Inuit people living in Inuit Nunangat (the area encompassing the four Inuit land claim regions), creating a dearth of information that reflects the health of non-status First-Nations, Métis, and urban Indigenous peoples. Aboriginal identity has been included in census data since the first Canadian census was conducted in 1871 and has been gradually refined from distinguishing between racial designations to self-reported ethnic ancestry in the 1950’s and finally to Indigenous self-identification in 1996. The latter is considered the preferred method of Indigenous identification both on practical and ideological terms. Data linkages in some regions do permit the integration of census information with vital statistics and provincial/territorial administrative and health surveillance data providing an important opportunity for Indigenous identification within health care data. However, block non- participation of many First Nations communities and under reporting of Indigenous identity among urban populations likely results in significant underestimations.

The ongoing development and implementation of Indigenous health information systems in Canada is essential and must be carried out in partnership with Indigenous communities and organizations to ensure appropriate data usage and governance. This ethical imperative is borne out of both the fundamental right of Indigenous to self-determination and self-governance and the historic abuses of information garnered from the study of Indigenous peoples or communities (167, 168). This thesis aims to contribute to this process through the selection and development of performance indicators that reflect the values and priorities of circumpolar peoples. However, the development of additional information infrastructure in partnership with Indigenous organizations and communities will be necessary to operationalize the findings of this study in a meaningful way.

5.5.2$ Roles$of$different$actors$

There are many diverse stakeholders in the performance of circumpolar maternity care. It is important to consider that the implications of this project may be different for each of these actors. In operationalizing the findings of this project, further consultation with different actors will be necessary to ensure that performance measurement instruments are built for use by these

77 different actors (169). Some of the most central implications for various stakeholders are outlined in Table 8 and are discussed in detail below.

Table 8. Stakeholder Opportunities and Responsibilities Actors& Opportunities& Responsibilities& •$Improved*focus*on*health*system* •$Engagement*in*process*of* Patients,* access*and*responsiveness** performance*measurement*by* caregivers,* •$New/expanded*opportunities*for* providing*feedback*through*PROs*or* direct*and*indirect*feedback*and* communities* through*consultation*and*advocacy** input*into*the*system*

•$Improved*focus*on*health*system* •$Accountable*to*provide*care*that*is* access*and*responsiveness** Clinicians* aligned*with*selected*priorities* •$Expanded*role*for*input*and* •$Engagement*in*PM*consultation* advocacy*

•$Potential*improvement*in*data* infrastructure* •$Ethical*research*conduct,*including* Researchers* •$Use*of*data*for*cohort*studies*that* importance*of*engaging*community* would*have*previously*required* partners* primary*data*collection* Health*system* •$Improvement*of*systems*and* •$Identification*of*opportunities*for* planners*&* programs*to*reflect*needs*and* quality*improvement** managers* expectations*of*patient*population* •$Accountable*to*align*policy*with* •$Improved*opportunities*for*evidence* context*and*values** Policy*makers* informed*policy* •$Utilize*appropriate*levers*to* generate*necessary*change**

This project’s focus on health system responsiveness places patients, their experiences and outcomes as central priorities. The development and implementation of a performance measurement system that is embedded in the values and priorities of affected populations and communities has the potential to improve health system responsiveness both by permitting stakeholder engagement in health system improvement and by identifying areas of strength and weakness within health system performance. These implications are not unique to health care consumers in circumpolar regions, however. Much of this thesis has been focused on Indigenous circumpolar peoples and thus, some lessons are applicable to Indigenous peoples’ health outside of the circumpolar context. For example, the value of incorporating Indigenous Traditional

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Knowledge into health systems, the importance of improving Indigenous health information systems in partnership with Indigenous organizations and communities, and the drawbacks of exclusively deficit-based reporting are relevant to First Nations, Inuit, and Métis peoples’ health in non-circumpolar remote, rural and urban settings.

Clinicians and researchers also stand to benefit from the implementation of lessons learned in this thesis and may also be presented with new responsibilities. Clinicians may often feel distanced from or even in conflict with performance indicators that are generated based on political or economic priorities. Where performance measurement efforts are truly aligned with the values and priorities of their patient population, health care providers and system managers may find themselves faced with a new brand of accountability. For researchers, improvement in health information infrastructure may open doors for new analyses. With such opportunities, however, comes a fundamental responsibility to fully and appropriately engage research partners. While this concept is most apparent in the context of studies utilizing primary data collection, it remains central to all research that is relevant to Indigenous people and communities. This includes studies that utilize secondary data sources such as administrative data or health surveillance databases. Appropriate community engagement and data management in such studies is necessary to ensure that deficit based reporting does not further marginalize and demoralize Indigenous communities whose data are being used. It is also necessary to advance research and policy paradigms that allow Indigenous communities to conduct and benefit from relevant research. Like clinicians, health system planners and managers may find themselves newly accountable to an invested patient population. In South-central Alaska, the Nuka system of care has achieved phenomenal results by empowering patients as “customer-owners” who are invested in the performance of the system (170, 171).

For political leaders and health policy makers, the findings of this thesis reinforce the fundamental role of values and context within the concept of health system stewardship (172- 174). Research has highlighted the importance of context and values at all levels of health policy and has suggested that the values upon which health policy is based should align with broader governmental values and policy agendas (173). In circumpolar states, the broader governmental and societal values have demonstrated a recent shift towards increased recognition of Indigenous rights and to the importance of Indigenous self-governance. In Canada, this shift is reflected in the upholding of treaty rights, the acknowledgement of and apology for the Canadian

79 government’s role in the residential school system, the release of the Truth and Reconciliation Commission’s final report, and the recent adoption of the UN declaration on the rights of Indigenous people. Within this environment of recognition and reconciliation, Canadian health policy makers have an opportunity and an obligation to engage with northern stakeholders and with Indigenous organizations and communities to ensure that health policies and resources are directed toward addressing the significant health inequities and health information inadequacies that affect Indigenous people in Canada.

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Chapter$6$$ Conclusions$ 6$ Conclusions$

This study included an extensive scoping review and a two-round modified Delphi consensus process in order to identify contextually appropriate performance indicators for maternity care in circumpolar regions. The project also included community feedback and the preliminary incorporation of Indigenous Knowledge in the identification of circumpolar performance measurement priorities.

Through this study we were able to identify eleven scientifically robust maternity care performance indicators that are important and relevant within a circumpolar context. More importantly, however, we identified a number of additional indicators that reflect important northern priorities such as the social determinants of health, health care accessibility and travel, and health system responsiveness including the incorporation of Indigenous Knowledge and self- determination within health system development and evaluation. Future acknowledgement and incorporation of these priorities in northern health system development and evaluation is a necessary step toward providing women in circumpolar regions with accessible, high quality, and responsive maternity care.

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Chapter$7$$ Future$Directions$ 7$ Future$directions$

The findings of this project highlight a significant need for future work in the area of circumpolar health system performance measurement. It is clear that existing circumpolar maternity care systems do not provide adequate access to high quality, culturally appropriate care for women in circumpolar regions. It is also evident that current performance measurement efforts are predominately focused on the priorities of the more densely populated southern regions of circumpolar nations and may ignore or even conflict with the priorities in circumpolar regions. While some very important efforts have been made to improve the health and wellness of Indigenous peoples, the accessibility and responsiveness of maternity care, and the quality of northern health information systems, the bulk performance measurement efforts in circumpolar regions do not adequately capture the experiences and priorities of Indigenous users and people from remote, northern communities.

This project contributes to the early stages of contextually appropriate performance measurement in circumpolar regions. Before the selected set of performance indicators can be recommended for use, three important steps should be considered. First, further discussion with key stakeholders should take place to ensure relevance to all affected parties and that performance measurement instruments can be tailored to each stakeholder group’s particular needs. Second, further research must be conducted to determine which of the recommended indicators would be feasible to measure based on existing data sources and to identify which data sources require immediate improvement and development. Finally, indicators should be piloted to ensure validity and reliability within the circumpolar context.

7.1$ Further$stakeholder$input$

The Delphi approach afforded significant advantages for this study. As discussed, it allowed for the consolidation of input from a heterogeneous group of stakeholders residing across a considerable geographical area. It also allowed for input from each participant to be considered

82 equally such that no single individual was able to dominate the discussion. However, this method is somewhat limited in its ability to help us understand the nuances of why certain indicators were selected over others and to incorporate the ideas of all the important stakeholders.

First, the Delphi approach allowed indicators to be selected and prioritized based on quantitative data collection but did not permit the collection of a significant amount of qualitative data. Unless participants provided additional information through optional written comments, any explanation of participant responses and nuanced discussion of contextual factors was absent. Consequently, this method allowed us to understand what indicators should be prioritized. It did not allow us to thoroughly understand why.

The stakeholder input and preliminary incorporation of Indigenous knowledge that was explored during the community feedback workshop should be developed. The incorporation of Indigenous Knowledge with western qualitative and quantitative data can be understood through a mixed methods approach adapted from the sequential, explanatory model proposed by Creswell et al (175) (Figure 12).

Figure 12. Explanatory mixed-methods design with incorporation of Indigenous knowledge as adapted from Creswell et al. (175)

Mixed-methods approaches have been successfully applied to other consensus based studies. For example a sequential mixed-methods approach has been used to explain the results of a Delphi studies (176). An embedded mixed-methods design has also been used to successfully integrate Indigenous Knowledge within a western-based nominal consensus process and to identify values

83 around health systems stewardship (147). Importantly, the latter study was found to be acceptable and effective in the circumpolar context. Qualitative data and Indigenous Knowledge shared during the completed workshop (Chapter 4) might be integrated into the existing results. This process will allow further consultation with Indigenous elders as well as Nordic and Russian stakeholders to ensure circumpolar generalizability. It will also provide an opportunity to include further patient input.

The use of the modified OECD framework should also be discussed, revised as necessary, and validated with circumpolar stakeholders. The representation of the suggested indicators using a validated framework will eliminate redundancy, ensure that indicators are well distributed among the different aspects of health system performance and highlight areas where further development is required.

7.2$ Feasibility$assessment$

Included in further stakeholder engagement should be the refinement of indicator definitions such that interregional and international comparisons can be made within and between circumpolar nations. Existing circumpolar data sources must be more thoroughly explored in order to identify which of the suggested indicators will be feasible to measure using existing resources.

As discussed, due to limited opportunities for Indigenous identification within many health information systems and unlinked data sources in many northern regions, some of the recommended indicators may not be immediately measureable. However, selecting performance indicators primarily on the basis of existing data sources neglects the importance of improving these sources to reflect current priorities. Suggested indicators that are not immediately measureable will provide a foundation for the improvement and expansion of northern health surveillance systems.

Long term, it is our hope that implementation of contextually appropriate indicators into circumpolar performance measurement systems will permit the incorporation of continuous quality improvement in rural and remote maternity centers, offer opportunities for inter-regional comparisons between peer regions, and compel the development and improvement of northern health information system for health surveillance and performance measurement.

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References$$

1. Freeman T. Using performance indicators to improve health care quality in the public sector: a review of the literature. Health Services Management Research. 2002;15(2):126-37.

2. Statistics Canada. Aboriginal Peoples in Canada in 2006: Inuit, Métis and First Nations, 2006 census: census year 2006. Ottawa: Statistics Canada, 2008.

3. MacMillan HL, MacMillan AB, Offord DR, Dingle JL. Aboriginal health. CMAJ. 1996;155(11):1569.

4. Smylie J. A guide for health professionals working with Aboriginal peoples: SOGC Policy Statement, No 100. J Obstet Gynaecol Can. 2001;22:1070–81.

5. Society of Obstetricians and Gynaecologists of Canada. Returning birth to Aboriginal, rural, and remote communities. SOGC Policy Statement no. 251. J Obstet Gynaecol Can. 2010;32(12):1186-8.

6. Frame JC. Outcomes of primary maternity care in Fort Smith, Northwest Territories. Vancouver: University of British Columbia; 2014.

7. Van Wagner V, Epoo B, Nastapoka J, Harney E. Reclaiming birth, health, and community: Midwifery in the Inuit villages of Nunavik, Canada. Journal of Midwifery & Women’s Health. 2007;52(4):384-91.

8. Van Wagner V, Osepchook C, Harney E, Crosbie C, Tulugak M. Remote Midwifery in Nunavik, Québec, Canada: Outcomes of Perinatal Care for the Inuulitsivik Health Centre, 2000- 2007. Birth. 2012;39(3):230-7.

9. Walter M, Andersen C. Indigenous Statistics: A Quantitative Research Methodology. Walnut Creek, CA: Left Coast Press, Inc.; 2013.

10. Smith LT. Decolonizing methodologies: Research and indigenous peoples: Zed books; 1999.

11. Anderson JM. Lessons from a postcolonial!feminist perspective: Suffering and a path to healing. Nursing Inquiry. 2004;11(4):238-46.

12. Browne AJ, Smye VL, Varcoe C. The relevance of postcolonial theoretical perspectives to research in Aboriginal health. Can J Nursing Research. 2005;37(4):16-37.

13. Bjerregaard P, Young TK. Health transitions in arctic populations: University of Toronto Press; 2008.

14. Young K. Circumpolar health–what is next? Int J Circumpolar Health. 2013;72.

85

15. The World Bank. Data: Greenland [cited 2016 Feb]. Available from: http://data.worldbank.org/country/greenland.

16. Møller H. “Double culturedness”: the “capital” of Inuit nurses. Int J Circumpolar Health. 2013;72.

17. Hounsgaard L, Jensen AB, Wilche JP, Dolmer I. The nature of nursing practice in rural and remote areas of Greenland. Int J Circumpolar Health. 2013;72.

18. Niclasen B, Mulvad G. Health care and health care delivery in Greenland. Int J Circumpolar Health. 2010;69(5):437.

19. The World Bank. Data: Iceland [cited 2016 Feb]. Available from: http://data.worldbank.org/country/iceland.

20. Central Intellgence Agency. The World Factbook [cited 2016 Feb]. Available from: https://www.cia.gov/library/publications/the-world-factbook/geos/fo.html.

21. Nordic Social Insurance Portal [Available from: http://www.nordsoc.org/en/Faroe- Islands/.

22. Thomson S. International profiles of health care systems, 2012: Commonwealth Fund; 2012.

23. Kozlov A, Vershubskya G, Kozlova M. Indigenous peoples of northern Russia: anthropology and health. Circumpolar Health Supplements. 2013(1).

24. U.S. Census Bureau Population Division. Annual Estimates of the Resident Population: April 1, 2010 to July 1, 2015 2015 [cited 2016 Mar]. Available from: http://factfinder.census.gov/faces/tableservices/jsf/pages/productview.xhtml?src=bkmk.

25. Statistics Canada. Population by year, by province and territory (Number) 2015 [Cited 2016 Mar]. Available from: http://www.statcan.gc.ca/tables-tableaux/sum- som/l01/cst01/demo02a-eng.htm.

26. Marchildon GP, Torgerson R. Nunavut: A Health System Profile: McGill-Queen's Press- MQUP; 2013.

27. Nuttall M. Indigenous peoples, self-determination, and the Arctic environment. The Arctic: Environment, People, Policy. 2000:377-409.

28. Robert M. Bone. The Canadian North. Issues and Challenges. Oxford: Oxford University Press; 2009.

29. Galloway T, Blackett H, Chatwood S, Jeppesen C, Kandola K, Linton J, et al. Obesity studies in the circumpolar Inuit: a scoping review. Int J Circumpolar Health. 2012;71:18698.

30. Arctic Council. Arctic peoples subdivided according to language families 2015 [Available from: http://arctic-council.org/index.php/en/learn-more/maps.

86

31. Alaska Native Language Centre. Languages: University of Alaska Fairbanks; [cited 2016 Jan]. Available from: https://www.uaf.edu/anlc/languages/.

32. Council of Yukon First Nations Self-Government Secretariat. Yukon First Nations Languages 2016 [cited 2016 Mar]. Available from: http://sgsyukon.ca/language- initiatives/yukon-first-nations-languages/.

33. Government of the Northwest Territories. Official Languages 2016 [2016 Mar]. Available from: https://www.ece.gov.nt.ca/official-languages.

34. Jones G. Historical Profile of the Great Slave Lake Area's Mixed European-Indian Ancestry Community. 2005.

35. Nation NTM. Abou the Northwest Territories Métis Nation 2016 [cited 2016 Mar]. Available from: http://www.nwtMétisnation.ca/.

36. North Slave Métis Alliance. History 2016 [cited 2016 Mar]. Available from: http://162.213.156.67/~nsma/history/.

37. Statistics Canada. High school graduates: Chart 5.1 –Percentage of population aged 25 to 29 who were high school graduates, Canada, provinces and territories, 1996, 2001 and 2006. 2006 [cited 2016 Apr]. Available from: http://www.statcan.gc.ca/pub/82-229- x/2009001/envir/desc/hsg-desc5.1-eng.htm.

38. The Saami People - A Handbook. Fram, Vasa, Finland: Davvi Girji OS; 2006.

39. Rohr J. IWGIA Report 18: Indigenous Peoples in the Russian Federation. Copenhagen: International Work Group for Indigenous Affairs, 2014.

40. Inuit Tapiriit Kanatami. Health Indicators of Inuit Nunangat within the Canadian Context: 1994-1998 and 1999-2003: Inuit Tapiriit Kanatami; 2010.

41. Smylie J, Crengle S, Freemantle J, Taualii M. Indigenous birth outcomes in Australia, Canada, New Zealand and the United States–an overview. The Open Women's Health Journal. 2010(4):7.

42. Smylie J, Fell D, Ohlsson A. A review of Aboriginal infant mortality rates in Canada: striking and persistent Aboriginal/non-Aboriginal inequities. Can J Public Health. 2010:143-8.

43. Sheppard AJ, Hetherington R. A decade of research in Inuit children, youth, and maternal health in Canada: areas of concentrations and scarcities. Int J Circumpolar Health. 2012;71:18383.

44. Public Health Agency of Canada. What Mothers Say: The Canadian Maternity Experiences Survey. Ottawa: 2009.

45. Kornelsen J, Kotaska A, Waterfall P, Willie L, Wilson D. The geography of belonging: the experience of birthing at home for First Nations women. Health & Place. 2010;16(4):638-45.

87

46. Chamberlain M, Barclay K. Psychosocial costs of transferring indigenous women from their community for birth. Midwifery. 2000;16(2):116-22.

47. O'Driscoll T, Kelly L, Payne L, St Pierre-Hansen N, Cromarty H, Minty B, et al. Delivering away from home: the perinatal experiences of First Nations women in northwestern Ontario. Can J Rural Medicine. 2011;16(4):126-30.

48. Lawford K. First Nations Women's Evacuation during Pregnancy from Rural and Remote Reserves. Ottawa, ON: University of Ottawa; 2011.

49. Moffitt PM. Colonialization: A health determinant for pregnant Dogrib women. Journal of Transcultural Nursing. 2004;15(4):323-30.

50. Smith PC, Mossialos E, Papanicolas I. Performance measurement for health system improvement: experiences, challenges and prospects. 2008.

51. Murray C, Evans D. Health systems performance assessment: debates, methods and empiricism. Geneva: World Health Organization. 2003.

52. World Health Organization. The world health report 2000: health systems: improving performance: World Health Organization; 2000.

53. Valentine NB, de Silva A, Kawabata K, Darby C, Murray CJ, Evans DB, et al. Health system responsiveness: concepts, domains and operationalization. Health systems performance assessment: debates, methods and empiricism. 2003:573-96.

54. Murray CJ, Kawabata K, Valentine N. People’s experience versus people’s expectations. Health Affairs. 2001;20(3):21-4.

55. Upadhaya B, Munir R, Blount Y. Association between performance measurement systems and organisational effectiveness. Int J of Operations & Production Management. 2014;34(7):853-75.

56. Canadian Institute for Health Information (CIHI). Health Indicators 2013. Ottawa: CIHI, 2013.

57. Donabedian A. The quality of care: How can it be assessed? JAMA. 1988;260(12):1743- 8.

58. Logan S. Outcome measures in child health. Archives of Disease in Childhood. 1991;66(6):745.

59. Smith P. On the unintended consequences of publishing performance data in the public sector. Int J Public Administration. 1995;18(2-3):277-310.

60. Boland T, Fowler A. A systems perspective of performance management in public sector organizations. Int J Public Sector Management. 2000;13(5):417-46.

88

61. Bowen S, Kreindler SA. Indicator madness: a cautionary reflection on the use of indicators in healthcare. Healthcare Policy. 2008;3(4):41.

62. Canadian Institute for Health Information (CIHI). Indicators 2016 [cited 2016 Mar]. Available from: https://www.cihi.ca/en/health-system-performance/performance- reporting/indicators.

63. Canadian Institute for Health Information (CIHI). A performance measurement framework for the Canadian health system. Ottawa: CIHI, 2013.

64. Institute of Medicine Committee on Quality of Health Care in America. Crossing the quality chasm: A new health system for the 21st century: National Academy Press; 2001.

65. .

66. Health Information and Quality Auhority. Guidance on Developing Key Performance Indicators and Minimum Data Sets to Monitor Healthcare Quality. Dublin: 2013.

67. Carinci F, Van Gool K, Mainz J, Veillard J, Pichora E, Januel J, et al. Towards actionable international comparisons of health system performance: expert revision of the OECD framework and quality indicators. Int J Qual Health Care. 2015;27(2):137-46.

68. Rozner S. Developin Key Performance Indicators: A toolkit for health sector managers. Bethesda, MD: United States Agency for International Development, 2013.

69. Kirshner B, Guyatt G. A methodological framework for assessing health indices. Journal of Chronic Diseases. 1985;38(1):27-36.

70. Veillard J, Champagne F, Klazinga N, Kazandjian V, Arah O, Guisset A-L. A performance assessment framework for hospitals: the WHO regional office for Europe PATH project. Int J Qual Health Care. 2005;17(6):487-96.

71. Zeitlin J, Wildman K, Breart G, Alexander S, Barros H, Blondel B, et al. PERISTAT: indicators for monitoring and evaluating perinatal health in Europe. Eur J Public Health. 2003;13(3 Suppl):29-37.

72. Boulkedid R, Sibony O, Goffinet F, Fauconnier A, Branger B, Alberti C. Quality Indicators for Continuous Monitoring to Improve Maternal and Infant Health in Maternity Departments: A Modified Delphi Survey of an International Multidisciplinary Panel. PLoS ONE. 2013;8(4):1-11.

73. Gagliardi AR, Fung MFK, Langer B, Stern H, Brown AD. Development of ovarian cancer surgery quality indicators using a modified Delphi approach. Gynecol Oncol. 2005;97(2):446-56.

74. Mieneke de Bruin-Kooistra MPA-V, Simone E. Buitendijk, , Westert GP. Finding the right indicators for assessing quality midwifery care. Int J Qual Health Care. 2012;24(3):301-10.

89

75. Arah OA, Westert GP, Hurst J, Klazinga NS. A conceptual framework for the OECD health care quality indicators project. Int J Qual Health Care. 2006;18(suppl 1):5-13.

76. Kelley E, Hurst J. Health care quality indicators project. 2006.

77. Australian Health Ministers' Advisory Council. Aboriginal and Torres Strait Islander Health Performance Framework 2014 Report. Canberra AHMAC; 2014.

78. Marmot M, Friel S, Bell R, Houweling TA, Taylor S, Commission on Social Determinants of Health. Closing the gap in a generation: health equity through action on the social determinants of health. The Lancet. 2008;372(9650):1661-9.

79. Dahlgren G, Whitehead M. Policies and strategies to promote social equity in health. Stockholm: Institute for future studies. 1991.

80. Allan B, Smylie J. First Peoples, second class treatment: The role of racism in the health and well-being of Indigenous peoples in Canada. Toronto, ON: The Wellesley Institute; 2015.

81. Reading CL, Wien F. Health inequalities and the social determinants of Aboriginal peoples' health: National Collaborating Centre for Aboriginal Health Prince George, BC; 2009.

82. UN General Assembly. United Nations declaration on the rights of Indigenous peoples. 2007.

83. Wolfe S. The politics of reparations and apologies: Springer Science & Business Media; 2013.

84. Tager M. Apologies to Indigenous Peoples in Comparative Perspective. The International Indigenous Policy Journal. 2014;5(4):7.

85. Truth and Reconciliation Commission of Canada. Truth and Reconciliation Commission of Canada: Calls to Action: Truth and Reconciliation Commission of Canada; 2015.

86. Chatwood S, Bytautas J, Darychuk A, Bjerregaard P, Brown A, Cole D, et al. Approaching a collaborative research agenda for health systems performance in circumpolar regions. Int J Circumpolar Health. 2013;72.

87. Smylie J, Anderson I, Ratima M, Anderson M. Indigenous health performance measurement systems in Canada, Australia, and New Zealand. The Lancet. 2006;367:2029-31.

88. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, Social Sciences and humanities Research Council of Canada. Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans. Ottawa, Canada: 2014.

89. Veillard J, Tipper B, Allin S. Health system performance reporting in Canada: Bridging theory and practice at pan!Canadian level. Canadian Public Administration. 2015;58(1):15-38.

90. Gracey M, King M. Indigenous health part 1: determinants and disease patterns. The Lancet. 2009;374(9683):65-75.

90

91. King M, Smith A, Gracey M. Indigenous health part 2: the underlying causes of the health gap. The Lancet. 2009;374(9683):76-85.

92. Lalonde AB, Butt C, Bucio A. Maternal health in Canadian Aboriginal communities: Challenges and opportunities. J Obstet Gynaecol Can. 2009;31(10):956-62.

93. Lawford K, Giles AR. An analysis of the evacuation policy for pregnant First Nations women in Canada. AlterNative: An International Journal of Indigenous Peoples. 2012;8(3):329.

94. Anderson M, Smylie J, Anderson I, Sinclair R, Crengle S. First Nations, Métis, and Inuit Health Indicators in Canada: A background paper for the project "Action Oriented Indicators of Health and Health Systems Development for Indigenous Peoples in Australia, Canada, and New Zealand". The Indigenous Peoples’ Health Research Centre (IPHRC), 2006.

95. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Social Research Methodology. 2005;8(1):19-32.

96. Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010;5(1):1-9.

97. Armstrong R, Hall BJ, Doyle J, Waters E. ‘Scoping the scope’of a cochrane review. Journal of Public Health. 2011;33(1):147-50.

98. Niclasen B, Kohler L. National indicators of child health and well-being in Greenland. Scand J Public Health. 2009;37(4):347-56.

99. Niclasen B. Low birthweight as an indicator of child health in Greenland: Use, knowledge and implications. Int J Circumpolar Health. 2007;66(3):215-25.

100. Kildea S, Kruske S, Barclay L, Tracy S. 'Closing the Gap': how maternity services can contribute to reducing poor maternal infant health outcomes for Aboriginal and Torres Strait Islander women. Rural and Remote Health. 2010;10(3):1383.

101. Kildea S, Stapleton H, Murphy R, Kosiak M, Gibbons K. The maternal and neonatal outcomes for an urban Indigenous population compared with their non-Indigenous counterparts and a trend analysis over four triennia. BMC Pregnancy and Childbirth. 2013;13(1):1.

102. Steenkamp M, Rumbold AR, Kildea S, Bar-Zeev SJ, Kruske S, Dunbar T, et al. Measuring what matters in delivering services to remote-dwelling Indigenous mothers and infants in the Northern Territory, Australia. Aus J Rural Health. 2012;20(4):228-37.

103. Norum J, Heyd A, Hjelseth B, Svee T, Mürer FA, Erlandsen R, et al. Quality of obstetric care in the sparsely populated sub-arctic area of Norway 2009-2011. BMC Pregnancy and Childbirth. 2013;13.

104. MacKenbach JP, McKee M. A comparative analysis of health policy performance in 43 European countries. Eur J Public Health. 2013;23(2):195-201.

91

105. Canadian Institute for Health Information (CIHI). Canadian Insititute for Health Information: Indicator Library 2015 [cited 2015 Nov]. Available from: http://indicatorlibrary.cihi.ca/display/HSPIL/Indicator+Library?desktop=true.

106. Public Health Agency of Canada. Perinatal Health Indicators for Canada 2013: a Report of the Canadian Perinatal Surveillance System. Ottawa, 2013.

107. First Nations Information Governance Centre (FNGC). First Nations Regional Health Survey (RHS) 2008-10. National Report or adults, youth and children living in First Nations communities. Ottawa: FNIGC, 2012.

108. Daghofer D. Promoting Health Equity - Choosing Appropriate Indicators: Literature Scan. Vancouver, BC: Provincial Health Services Authority, 2013.

109. Healy S, Plaza D, Qayyum A, Porter L, Kablutsiak K, Sequin C. Nunavut Report on Comparable Health Indicators. Department of Health and Social Services, Government of Nunavut, 2004.

110. Irvine J, Quinn B, Stockdale D. Northern Saskatchewan Health Indicators Report 2011. La Ronge, SK: Athabasca Health Authority and Keewatin Yatthé and Mamawetan Churchill River Regional Health Authorities. Population Health Unit, 2011.

111. Centers for Disease Control and Prevention. National centre for health statistics. Health Indicators Warehouse [cited 2015 Nov]. Available from: http://www.healthindicators.gov/.

112. Association of Maternal & Child Health Programs. Life course indicators online tool 2014 [cited 2015 Nov]. Available from: http://www.amchp.org/programsandtopics/data- assessment/Pages/LifeCourseIndicators.aspx.

113. Anderson M, Anderson I, Smylie J, Crengle S, Ratima M. Measuring the Health of Aboriginal and Torres Strait Islander Peoples: A Background Paper for the Project “Action Oriented Indicators of Health and Health Systems Development for Indigenous Peoples in Australia, Canada, and New Zealand". The Indigenous Peoples’ Health Research Centre (IPHRC), 2006.

114. Austrialian Institute of health and Welfare (AIHW). Aboriginal and Torres Strait Islander health performance framework 2014: data tables: AIHW; 2015 [cited 2015 Nov]. Available from: http://www.aihw.gov.au/indigenous-data/health-performance-framework/.

115. Ministry of Health. An Indication of New Zealanders' Health 2007. Wellington, 2007.

116. Ministry of Health. Tatau Kahukura Maori Health Chart Book 2015 (3rd Edition). Wellington: Ministry of Health; 2015.

117. Euro-Peristat Project with SCPE and EUROCAT. European Perinatal Health Report. Health and care of pregnant women and babies in Europe in 2010. 2013.

118. Nordic Medico-Statistical Committee (NOMESCO). Health Statistics in the Nordic Countries 2015. Copenhagen: 2015.

92

119. CIHI Indicator library: Canadian Institute for Health Information (CIHI). 2014 [Available from: http://indicatorlibrary.cihi.ca/display/HSPIL/Indicator+Library?desktop=true.

120. SCRGSP (Steering Committee for the Review of Government Service Provision). Report on Government Services 2013. Volume 2: Health; Community servies; Housing and homelessness. Canberra, 2013.

121. Hansen JC, Reiersen L-O, Wilson S. Arctic Monitoring and Assessment Programme (AMAP): Strategy and results with focus on the human health assessment under the second phase of AMAP, 1998-2003. Int J Circumpolar Health. 2002;6:300-18.

122. He Korowai Oranga. Maori health strategy. Wellington, New Zealand: Ministry of Health. 2002.

123. Fine A, Kotelchuck M. Rethinking MCH: The life course model as an organizing framework. US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. 2010.

124. Organization WH. The world health report 2000: health systems: improving performance: World Health Organization; 2000.

125. Rand Corportation. Delphi Method [cited 2016 Feb]. Available from: http://www.rand.org/topics/delphi-method.html.

126. Graham B. Delphi as a method to establish consensus for diagnostic criteria. J Clin Epi. 2003;56(12):1150-6.

127. Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C. Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review. PLoS ONE. 2011;6(6):e20476.

128. Dalkey N. An experimental study of group opinion: the Delphi method. Futures. 1969;1(5):408-26.

129. George Skulmoski FH. The Delphi Method for Graduate Research. Journal for Information Technology Education. 2007;6.

130. Hsu C-C, Sandford BA. The Delphi Technique: Making Sense Of Consensus. Practical Assessment, Research & Evaluation. 2007;12(10).

131. Zevin B. Design and Validation of a Comprehensive Simulation- Enhanced Training Curriculum for a Complex Minimally Invasive Operation. Toronto: University of Toronto 2014.

132. Arah OA, Klazinga N, Delnoij D, Ten Asbroek A, Custers T. Conceptual frameworks for health systems performance: a quest for effectiveness, quality, and improvement. Int J Qual Health Care. 2003;15(5):377-98.

133. Nunnally JC, Bernstein I. The assessment of reliability. Psychometric Theory. 1994;3(1):248-92.

93

134. Bland JM, Altman DG. Statistics notes: Cronbach's alpha. BMJ. 1997;314(7080):572.

135. Shore E. Design of a Comprehensive Evidence-Based Laparoscopy Curriculum for Gynecoogy Residents. Toronto: University of Toronto; 2014.

136. Olausson PMO, Cnattingius S, Goldenberg RL. Determinants of poor pregnancy outcomes among teenagers in Sweden. Obstet Gynecol. 1997;89(3):451-7.

137. Finer LB, Zolna MR. Unintended pregnancy in the United States: incidence and disparities, 2006. Contraception. 2011;84(5):478-85.

138. O'Brien B, Chalmers B, Fell D, Heaman M, Darling EK, Herbert P. The experience of pregnancy and birth with midwives: results from the Canadian maternity experiences survey. Birth. 2011;38(3):207-15.

139. Smylie J. Approaching reconciliation: Tips from the field. Can J Public Health. 2015;106(5):261-4.

140. Graham A, McDonald J. Ethical principles for the conduct of research in the North. 2003.

141. Aurora Research Institute. Licensing Research. Inuvik, Northwest Territories. 2014 [cited 2015 Mar]. Available from: http://nwtresearch.com/licensing-research.

142. Nunavut Research Institute. Research Licencing Applicaitons 2015 [cited 2015 Mar]. Available from: http://www.nri.nu.ca/research-licencing-applications.

143. Stephens C, Nettleton C, Porter J, Willis R, Clark S. Indigenous peoples' health—why are they behind everyone, everywhere? The Lancet. 2005;366(9479):10-3.

144. Smylie J, Martin CM, Kaplan-Myrth N, Steele L, Tait C, Hogg W. Knowledge translation and indigenous knowledge. Int J Circumpolar Health. 2004;63.

145. Smylie J, Olding M, Ziegler C. Sharing What we Know About Living a Good Life: Indigenous Approaches to Knowledge Translation. J Can Health Libraries Association. 2014;35:16.

146. Martin DH. Two-eyed seeing: a framework for understanding Indigenous and non- Indigenous approaches to Indigenous health research. Can J Nursing Research. 2012;44(2):20- 42.

147. Chatwood S, Paulette F, Baker R, Eriksen A, Hansen KL, Eriksen H, et al. Indigenous values underlying health systems stewardship in circumpolar regions. (under review).

148. Kurtz DL. Indigenous methodologies: Traversing indigenous and western worldviews in research. AlterNative: An International Journal of Indigenous Peoples. 2013;9(3):217.

149. Lavallée LF. Practical application of an Indigenous research framework and two qualitative Indigenous research methods: Sharing circles and Anishnaabe symbol-based reflection. Int J Qualitative Methods. 2009;8(1):21-40.

94

150. Tough S. Knowledge Exchange as a Vehicle to Improve the Health of Aboriginal Communities. Pimatisiwin.5(2):107.

151. Harmoized Cycle of Dene Laws of Healthy Relationships, provided by Elder Be'sha Blondin.

152. Circle of Balance. Teachings from Northern Integrated Culture with the Environment. Provided by Elder Be'sha blondin.

153. Leon Feinstein RS, Tashweka M. Anderson, Annik Sorhaindo, Cathie Hammond, . What are the effects of education on health? Organization for Economic Cooperation and Development (OECD), 2006.

154. Leduc L, Farine D, Armson B, Brunner M, Crane J, Delisle M, et al. Stillbirth and bereavement: guidelines for stillbirth investigation. J Obstet Gynaecol Can. 2006;28(6):540-52.

155. NWT Health and Social Services. Public performance measures report. 2015.

156. Government of the Northwest Territories. Right from the Start: A Framework for Early Childhood Development in the Northwest Territories. Departments of Education, Culture and Employment, and Health and Social Services; 2013.

157. GNWT Senior Planning and Performance Analyst. Email Communication ed2016.

158. Canadian institute for Health Information (CIHI). Your Health System 2016 [cited 2016 Apr].

159. Northwest Territoiries Health and Social Services. Northwest Territories - Health Status Report. 2011.

160. NWT Health and Social Services. Performance Measurement Framework. 2015.

161. Heaman M, Kingston D, Helewa M, Brownell M, Derksen S, Bogdanovic B, et al. Perinatal services and outcomes in Manitoba. Winnipeg, MB: Manitoba Centre for Health Policy, 2012.

162. Khan KS, Wojdyla D, Say L, Gülmezoglu AM, Van Look PF. WHO analysis of causes of maternal death: A systematic review. The Lancet. 2006;367(9516):1066-74.

163. Schuitemaker N, van Roosmalen J, Dekker G, van Dongen P, van Geijn H, Gravenhorst JB. Confidential enquiry into maternal deaths in The Netherlands 1983–1992. Eur J Obstet Gynecol Repro Bio. 1998;79(1):57-62.

164. Statistics Canada. Vital Statistics - Birth database 2016 [cited 2016 May]. Available from: http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=3231 - a2.

165. Lauson S, McIntosh S, Obed N, Healey G, Asuri S, Osborne G, et al. The development of a comprehensive maternal-child health information system for Nunavut-Nutaqqavut (Our children). Int J Circumpolar Health. 2011;70(4):363-72.

95

166. Smylie J, Firestone M. Back to the basics: Identifying and addressing underlying challenges in achieving high quality and relevant health statistics for Indigenous populations in Canada. Statistical Journal of the IAOS. 2015;31(1):67-87.

167. Mosby I. Administering colonial science: Nutrition research and human biomedical experimentation in Aboriginal communities and residential schools, 1942–1952. Social history. 2013;46(1):145-72.

168. Harry D, Kaneche LaM. Asserting tribal sovereignty over cultural property: moving towards protection of genetic material and indigenous knowledge. Seattle J Soc Just. 2006;5:27.

169. Veillard JHM. Performance management in health systems and services: Studies on its development and use at international, national/jurisdictional, and hospital levels: University of Amsterdam; 2012.

170. Gottlieb K. The Nuka System of Care: improving health through ownership and relationships. Int J Circumpolar Health. 2013;72.

171. Alderwick H, Ham C, Buck D. Population health systems - Going beyond integrated care. London: The King's Fund, 2015.

172. Veillard J, Huynh T, Ardal S, Kadandale S, Klazinga NS, Brown AD. Making health system performance measurement useful to policy makers: aligning strategies, measurement and local health system accountability in Ontario. Healthcare Policy. 2010;5(3):49.

173. Veillard JHM, Brown AD, Barış E, Permanand G, Klazinga NS. Health system stewardship of National Health Ministries in the WHO European region: concepts, functions and assessment framework. Health Policy. 2011;103(2):191-9.

174. Saltman RB, Ferroussier-Davis O. The concept of stewardship in health policy. Bulletin of the World Health Organization. 2000;78(6):732-9.

175. Creswell JW, Plano Clark VL, Gutmann ML, Hanson WE. Advanced mixed methods research designs. Handbook of mixed methods in social and behavioral research. 2003:209-40.

176. Kennedy HP. Enhancing Delphi research: methods and results. Journal of Advanced Nursing. 2004;45(5):504-11.

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Appendices$ Appendix$1$T$Scoping$review$key$words$

Electronic&research&database&search&for&circumpolar&maternal&&&perinatal&health&literature& Databases& Scopus& Ebscohost*(all*articles*retrieved*from*Academic*Search*Complete,*CINAHL,*Canadian* Reference*Centre,*and*Women’s*Studies*International)* Global&health&database&(OVID)& Dates& Jan*1,*1985*to*Aug*1,*2015* Language(s)& All* Keywords& “northern*Norway”*OR*“north*Norway”*OR*Siberia**OR*“canad**north*”*OR*“north** canad*”*OR*nuuk*OR*Svalbard*OR*tromso*OR*finmark*OR*finmarkk*OR*“northwest* Russia*”*OR*eskimo**OR*innu*OR*“northern*finland”*OR*umea*OR*circumpolar*OR* arctic*OR*Nunavut**OR*Iqaluit*OR*Nunavummiut*OR*Kitikmeot*OR*Kivalliq*OR*Qikiqtani* OR*Qikiqtaaluk*OR*Baffin*OR*kuujjuaq*OR*Inuvialuit*OR*Nunavik*OR*Nunatsiavut*OR* Nunavtukavut*OR*Inupiat*OR*yupik*OR*kalaallit*OR*“faroe*islands”*OR*“chukchi* peninsula”*OR*Chukotka*OR*inuit**OR*“Alaska**native*”*OR*Yup’ik*OR*yellowknife*OR* “northwest*territories”*OR*Yukon*OR*Whitehorse*OR*Fairbanks*OR*Greenland**OR* Saami*OR*Iceland**OR*Reykjavik*OR*“north**Sweden”*OR*vasterbotten**OR* Norrbotten**OR*lappi*OR*oulu*OR*Qaujigiartiit*OR*“northern*Quebec”*OR*“northern* state*medical*university”*OR*“northwestern*Ontario”*OR*“aurora*college”*OR*“arctic* university*of*Norway”** AND* perinatal*OR*prenatal*OR*antenatal*OR*maternal*OR*pregnan**OR*fetal*OR*ultrasound* OR*obstetric** * & Additional&circumpolar&searches* Database* High*North*Research*Documents*archive* Dates& All*(to*Oct*21,*2015)* Language(s)* All* Keywords* prenatal*OR*obstetric**OR*perinatal*OR*maternal*OR*pregnan*)*AND*(system*OR* performance*OR*outcome**OR*indicator** * & Online&grey&literature&searches* Database* Google&Advanced& Dates* Jan*1,*2000*to*Oct*21,*2015* Language(s)* All* Keywords* All#of#these#words:*"health*system"*AND*performance*AND*indicators*AND*maternal** AND* Any#of#these#words:*Alaska*Yukon*“Northwest*Territories”*Nunavut*Nunavik* Nunatsiavut*Labrador*Greenland*"northern*Finland"*"northern*Sweden"*"northern* Russia"*Siberia*"northwest*Russia"*Iceland*"northern*Norway"*circumpolar*Indigenous* Aboriginal*circumpolar*"First*Nations"*"Native*American"*"American*Indian"*"Alaska* Native"*Métis*Inuit*Greenlandic*Sami*Saami** Region(s)* Canada,*USA*(Alaska),*Greenland,*Iceland,*Norway,*Sweden,*Finland,*and*Russia*

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Appendix$2$–$Scoping$review$article$selection$form$

Step 1: Screening - Screen abstracts using selection criteria below Step 2: Full Text review - Fill out form for each article that was deemed appropriate for full text review Step 3: Data extraction - Fill out data extraction form for each paper that was selected for inclusion

1. Citation: 2. Reviewer: 3. Date of Review: 4. Publication Type: ___ Journal Article ___Conference abstract ___Government report ___NGO report ___Other

Yes No Notes Provides performance measurement strategy/framework or list of quality/performance indicators Focus is on maternity care system (antepartum/prenatal/antenatal, intrapartum/labour/birth, postpartum, neonatal*) Region/population: •$ remote regions OR •$ Circumpolar regions (Alaska, northern Canada†, Greenland, Iceland, Sweden, Norway, Finland, Siberia) OR •$ Indigenous focus

5. Selection Criteria (check yes or no) – study must meet all criteria to be included:

_____Include _____Exclude

* Exclude if article focuses ONLY on pediatric health indicators/outcomes after 28 days of life † Canadian circumpolar regions of interest include YT, NT, NU. Nunatsiavut and Nunavik will likely be included due to the large Indigenous populations. Documents from other Canadian regions may be of relevance if they focus on rural/remote regions or Indigenous populations.

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Appendix$3$–$Scoping$review$data$extraction$form$ $ The following items were recorded in a spreadsheet format. They are shown here in a list format for clarity of presentation: & 1.! Citation:&& & & 2.! Date&of&Review:& & * 3.! Publication&characteristics:& Source* •$ Peer*reviewed*literature* •$ Academic*literature* * Publication*type* •$ Journal*article* •$ Conference*abstract* •$ Government*report/website* •$ NGO*report/website* •$ Other*______* & & 4.! Methods:&& & & & & 5.! Region&and&population:& •$ Target*region*(country,*state/province/territory):*______& & •$ Indigenous*focus** $ Yes* $ No* & & 6.! Indicators& •$ Indicators*provided*(with*definitions*where*available)** o$ (Reviewer*to*list*in*spreadsheet)*

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* •$ Article*provides*information*on*indicator*properties** $ Yes* $ No* * •$ Suggested*source*of*data*for*indicator*measurement:*______* * •$ Article*reports*results*of*indicators* $ Yes* $ No* * •$ The*selected*indicators*are*part*of*a*framework* $ Yes* $ No* * •$ The*framework*development*and*indicator*selection*process*is*described* $ Yes* $ No* * •$ There*was*key*stakeholder*participation*in*indicator*framework*development* and*indicator*selection** $ Yes* $ No* * & 7.! Notes:&& & & & $

$

$

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Appendix$4$–$Indicator$information$package$ $ MCH*Indicators*Info*Sheet*

* A*scoping*review*of*MCH*indicators*focusing*on*indigenous*or*circumpolar*health* systems*was*conducted.*The*following*62*unique*indicators*were*selected*for* evaluation.*The*indicators*have*been*organized*according*to*a*modified*version*of*the* OECD*Health*Performance*Framework.** * The*following*pages*contain*information*on*the*available*definitions*and*justification*for* each*indicator.*For*many*indicators,*multiple*definitions*were*identified*in*the*literature.* Where*this*was*the*case,*the*most*commonly*occurring*definition*is*listed*as*the* primary*definition.*Other*definitions*or*related*indicators*are*listed*for*your*information.** * If*the*information*was*available*in*the*literature,*descriptions*of*the*reliability,*validity* and*current*use*of*each*indicator*is*included.*For*many*indicators,*this*information*was* not*available.** * Definitions*marked*with*an*asterisk*(*)*represent*those*additional*definitions*that*were* suggested*by*panel*members*in*ROUND*1.* & && & Table&of&Contents& & Determinants*of*Health*…………………………………………………………………………………….101*U*107* * Effectiveness………………………………………………...……………………………………………………108*U122* * Safety……………………………………………………………………………………………………………...………...123* * Responsiveness*…………………………………………………………………………………………………124*U*127* * Accessibility…………………………………………………………………………………………………...... 128*U*132* * Cost/expenditure*……………………………………………………………………………………………..133*U*134* &

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Determinants*of*Health:** * 1.&Teenage&pregnancy& * Primary*definition:** •$ Teenage*birth*rate:*Total*number*of*births*per*1000*women*ages*15U19* * Other*definitions:** •$ Early*teenage*birth*rate:*Number*of*births*per*1000*women*ages*10U14* •$ Teenage*pregnancy*rate:*Number*of*pregnancies*(live*births,*still*births,* spontaneous*abortions*and*therapeutic*abortions)*per*1000*women*ages*15U19** •$ Repeat*teen*births:*Percentage*of*teen*births*that*are*repeat*teen*births* •$ Mean*age*at*first*pregnancy* •$ Distribution*of*age*in*years*at*delivery*for*women*delivering*a*live*born*or* stillborn*baby*(ages*10U14,*15U19,*20U24,*25U29,*30U*34,*35U39,*40U44,*and*45+)** * Early*childbearing*is*associated*with*increased*risk*of*preterm*birth,*growth*restriction,* perinatal*mortality,*and*congenital*anomalies*(1).*Younger*mothers*are*also*more*likely* to*experience*low*socioeconomic*status*(SES),*inadequate*prenatal*care*and*poor* nutrition*(2).*The*majority*of*teen*pregnancies*are*unplanned*(3)*and*in*highUincome* countries,*teenage*pregnancy*is*felt*to*be*representative*of*broader*adolescent*sexual* health.** * * 2.&Advanced&maternal&age& * Primary*definition:** •$ Proportion*of*live*births*to*women*35*or*older* * Other*definitions:** •$ Percentage*of*live*births*to*women*40U54* •$ Distribution*of*age*in*years*at*delivery*for*women*delivering*a*live*born*or* stillborn*baby*(ages*10U14,*15U19,*20U24,*25U29,*30U*34,*35U39,*40U44,*and*45+)** Late*childbearing*is*associated*with*higher*than*average*rates*of*preterm*birth,*growth* restriction,*perinatal*mortality,*and*congenital*anomalies*(1,*4).*In*highUincome* countries,*the*proportion*of*births*to*women*over*35*is*increasing*and*thus*so*are*the* costs*associated*with*an*increased*number*of*higher*risk*pregnancies.** & & & & &

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3.&Maternal&Body&Mass&Index&(BMI)& & Primary*definition:** •$ Distribution*of*mother’s*preUpregnancy*body*mass*index*(BMI)** o$ <18.5*(underweight)* o$ 18.5U24.9*(normal)* o$ 25U29.9*(overweight)* o$ 30U34.9*(obese*class*I)* o$ 35U39.9*(obese*class*II)* o$ >40*(obese*class*III)* * Other*definitions:** •$ Maternal*weightUgain*in*pregnancy& & * Obese*mothers*are*at*increased*risk*of*gestational*diabetes,*preUeclampsia,*and* caesarean*section.*The*magnitude*of*the*risk*appears*to*increase*with*increasing*BMI* (5).*Neonates*born*to*obese*mothers*are*at*a*small*but*statistically*significant*increase* in*the*risk*of*congenital*anomalies*(6).*In*many*regions,*preUpregnancy*BMI*is*recorded* at*the*first*antenatal*visit.*This*type*of*measurement*may*provide*a*slight*overestimate* of*maternal*weight,*particularly*for*patients*who*present*late*for*care.*In*regions*where* preUpregnancy*BMI*is*reported*by*patients,*values*tend*to*be*underestimated.* * Maternal*weight*gain*in*pregnancy*refers*to*the*amount*of*weight*gained*from* conception*to*delivery.*The*Institute*of*Medicine*(IOM)*has*outlined*recommendations* for*weight*gain*during*pregnancy.*These*recommendations*are*based*on*preUpregnancy* BMI*but,*because*they*do*not*distinguish*among*women*with*BMI>30,*they*have*met* with*some*controversy.*Despite*this*disagreement,*is*well*established*that*less*than* ideal*weight*gain*is*associated*with*poor*fetal*growth*whereas*greater*than*ideal*weight* gain*is*associated*with*macrosomia*and*increased*risk*of*caesarean*section*(7).** * * * * * * * * * * * * * &

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4.&Maternal&education&level& & Primary*definition:** •$ Proportion*of*pregnancies*to*mothers*with*education*level*less*than*grade*12& * Other*definitions:* •$ Distribution*of*mother’s*education*level*(primary*school*completed,*started,*or* no*formal*education;*any*secondary;*any*post*secondary)* * Low*maternal*education*is*associated*with*increased*risk*of*preterm*birth*and*maternal* and*perinatal*mortality*(8).*Evidence*to*suggest*that*education*is*linked*to*health* outcomes*and*health*determinants*such*as*health*behaviours,*risky*behaviours*and* preventative*service*use.** * Along*with*other*indicators*such*as*occupation*and*income,*education*level*is*frequently* collected*as*a*proxy*for*social*position.*Of*course,*education*does*not*act*in*isolation* and*its*effects*can*be*difficult*to*assess*independently*of*other*factors*(8).* * & & 5.&Domestic&violence&& * Primary*definition:** •$ Proportion*of*pregnant*women*reporting*physical*or*sexual*abuse*in*the*past* two*years* * Other*definitions:* •$ Proportion*of*pregnant*women*reporting*domestic*violence*(afraid*for*physical* safety)* •$ Proportion*of*pregnant*women*reporting*domestic*violence*(emotional*abuse)* * Family*violence*is*defined*as*“any*behaviour*by*one*family*member*against*another* which*may*endanger*that*person’s*survival,*security*or*wellUbeing”(9).*It*can*begin*or* escalate*during*pregnancy.*Family*violence*can*have*a*significant*impact*on*the*physical* and*mental*health*of*mothers*and*their*children.*Physical*violence*has*been*associated* with*an*increased*risk*of*antepartum*haemorrhage,*intrauterine*growth*restriction,*and* perinatal*death*(10).* * Assessment*of*family*violence*can*be*done*through*linkage*with*police*records*or* patient*reporting.*A*variety*of*domestic*violence*screening*instruments*are*available*to* aid*in*collection*of*data*but*rigorous*use*of*these*tools*requires*validation*with*the* target*population*(11)*.* * &

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6.&Tobacco&exposure&during&pregnancy& * Primary*definition:** •$ Proportion*of*women*who*smoked*during*pregnancy** * Other*definitions:** •$ Proportion*of*women*who*reported*smoking*at*the*first*antenatal*visit* •$ Proportion*of*women*who*reported*abstaining*from*smoking*during*pregnancy* •$ Proportion*of*patients*who*reported*smoking*in*pregnancy*and*were*given* smoking*cessation*advice* •$ Proportion*of*patients*who*reported*quitting*smoking*during*pregnancy* * Maternal*smoking*during*pregnancy*is*associated*with*increased*risk*of*spontaneous* abortion,*low*birth*weight,*preterm*birth*and*increased*perinatal*mortality*(11).* Smoking*cessation*interventions*provided*during*pregnancy*are*an*effective*way*to* improve*maternal*child*health*(12).** * Limitations*associated*with*reporting*of*tobacco*exposure*during*pregnancy*include*the* risk*of*underUreporting*by*mothers*and*variations*in*methods*of*data*collection*and* reporting*across*regions.** & & & 7.&Use&of&illicit&drugs&during&pregnancy& & Primary*definition:** •$ Proportion*of*women*who*report*using*illicit*substances*during*pregnancy* * Other*definitions:** •$ Proportion*of*women*reporting*cannabis*use*at*first*antenatal*visit* •$ Proportion*of*pregnancy*women*who*reported*abstaining*from*illicit*drug*use*in* the*previous*30*days* * There*is*considerable*maternal*and*infant*morbidity*associated*substance*use*during* pregnancy.*Illicit*drug*use*during*pregnancy*increases*the*risk*of*obstetrical* complications*including*early*pregnancy*loss,*placental*abruption,*intrauterine*growth* restriction,*hypertensive*disorders*of*pregnancy,*preterm*birth*and*stillbirth*(13).** * Limitations*associated*with*reporting*of*substance*use*pregnancy*include*the*risk*of* underUreporting*by*mothers*and*variations*in*methods*of*data*collection*and*reporting* across*regions.* & &

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& 8.&Use&of&alcohol&during&pregnancy& * Primary*definition:** •$ Proportion*of*mothers*reporting*alcohol*use*in*pregnancy* * Other*definitions:** •$ Proportion*of*pregnant*women*aged*15U44*who*reported*no*binge*drinking*in* the*previous*30*days* •$ Proportion*of*pregnant*women*aged*15U44*who*reported*no*alcohol*use*in*the* previous*30*days* * In*utero*exposure*to*high*alcohol*concentrations*can*lead*to*fetal*alcohol*spectrum* disorder*(FASD)*and*related*diagnoses.*FASD*is*highly*variable*in*presentation*but*is* most*commonly*associated*with*facial*abnormalities,*growth*restriction,*and/or* neurological*or*cognitive*deficits*(14).* * Systematic*underreporting*in*surveys*of*pregnant*women*or*new*mothers*is*a* considerable*risk*in*assessing*socially*undesirable*behaviours.*Surveying*mother’s* afterbirth*of*an*affected*child*can*significantly*increase*recall*and*reporting*bias.*In*a* clinical*setting,*screening*tools*such*as*the*TUACE*and*TWEAK*are*available*to*aid* identification*of*atUrisk*prenatal*alcohol*use.** & & & 9.&Exposure&to&environmental&contaminants& & Primary*definition:* •$ Persistent*organic*pollutant*(POP)*concentration*in*breast*milk* & Persistent*organic*pollutants*are*a*group*of*lipophilic*substances*that*bioUaccumulate* and*thus*reach*very*high*concentrations*in*artic,*particularly*marine,*food*sources.* There*appears*to*be*a*relationship*between*POP*exposure*early*in*pregnancy*and* gestational*diabetes*(15),*and*fetal*growth*(16).** * There*is*little*available*evidence*on*the*use*of*POP*concentrations*as*a*health*indicator.** & & & & & & & &

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10.&Patient&reported&experience&of&stressors&during&pregnancy& & Primary*definition:* •$ Proportion*of*women*who*reported*two*or*more*stressors*during*pregnancy* * Other*definitions:* •$ Proportion*of*women*reporting*three*or*more*stressful*life*events*in*the*12* months*prior*to*the*birth*of*their*baby** & Exposure*to*psychosocial*stressors*in*pregnancy*have*been*associated*with*an*increased* risk*of*fetal*growth*restriction,*preterm*birth,*and*childhood*cognitive*outcomes*(17).* However,*accurately*quantifying*psychosocial*stress*requires*the*use*of*psychometric* tools,*which*have*not*been*validated*in*pregnant*populations*(17,*18).** * In*regions*where*this*indicator*has*been*measured*as*part*of*patient*experience*surveys,* many*stressful*events*were*included.*For*example,*“moved*to*a*new*address”,*“a*close* family*member*was*very*sick*and*had*to*go*to*the*hospital”,*and*“argued*with*husband* or*partner*more*than*usual”(19).* & & 11.&Breastfeeding&practices& & Primary*definition:** •$ Proportion*of*newborns*that*were*exclusively*breastfed*through*the*first*48* hours*of*life*(as*a*percentage*of*all*newborn*babies)* * Other*definitions:** •$ Rate*of*breastfeeding*initiation:*Proportion*of*newborns*that*were*breast*fed*at* anytime*in*the*first*48*hours*after*birth** •$ Proportion*of*newborns*receiving*mixed*food*(breast*milk*plus*other)* •$ Proportion*of*women*who*were*breastfeeding*their*newborns*at*discharge*from* hospital* •$ Proportion*of*breastfed*newborns*who*received*formula*supplementation*in*the* first*two*days*of*life* * Breastfeeding*provides*important*nutritional,*psychosocial,*and*immunological*benefits* for*infants*and*mothers*(20).*The*WHO*currently*recommends*exclusive*breastfeeding* until*6*months*of*age.#Public*health*policies*and*healthcare*practices*have*the*potential* to*influence*the*establishment*of*breastfeeding*in*the*first*48*hours*of*life*(21).*Many* health*indicator*sets*measure*breastfeeding*rates*beyond*the*neonatal*period.*These* indicators*were*excluded*from*consideration*in*this*study*in*order*to*focus*attention*on* the*antenatal*and*neonatal*periods.** *

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Measurement*concerns*include*consistency*of*the*time*at*which*breastfeeding*is* recorded.*For*example,*if*it*is*recorded*at*the*time*of*discharge*from*hospital,*this*may* or*may*not*correspond*to*48*hours*of*life.*Surveys*of*mothers*in*the*post*partum*period* may*be*subject*to*recall*bias.** * & 12.&Involvement&of&child&and&family&services&or&similar&organization& & Definition*identified*in*the*literature:* •$ Proportion*of*births*to*women*who*have*had*contact*with*the*Department*of* Child*safety* * Kildea*et*al*(22)*found*that*indigenous*women*in*Australia*were*significantly*more*likely* than*non*indigenous*women*to*experience*psychosocial*challenges*in*pregnancy,* including*contacted*with*the*Department*of*Child*Safety.*However,*no*comparison*was* made*with*maternal*or*neonatal*health*outcomes.** * * * *

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Effectiveness:** & 13.&Anemia&during&pregnancy& * Primary*definition:** •$ Proportion*of*women*diagnosed*with*anemia*during*pregnancy* * Other*definitions:** •$ Proportion*of*women*with*anemia*who*received*treatment*in*pregnancy** * Because*of*increased*iron*requirements*during*pregnancy,*pregnant*women*are*at* increased*risk*of*iron*deficiency*anemia.*Anemia*in*the*first*and*second*trimester*has* been*associated*with*an*increased*risk*of*low*birth*weight.*Iron*supplementation*during* pregnancy*mitigates*this*risk*(23).** * * & 14.&Eclampsia& * Primary*definition:* •$ Rate*of*eclampsia*(per*1000*births)* * Hypertensive*disorders*of*pregnancy*contribute*to*severe*maternal*and*neonatal* morbidity*and*mortality*worldwide.*Eclampsia*is*the*most*severe*of*the*hypertensive* disorders*of*pregnancy*and*carries*substantial*risks*for*mother*and*baby.*It*is* exceedingly*rare*in*highUincome*countries*(<1/1000*births)*where*access*to* comprehensive*prenatal*care*and*emergency*obstetrical*services*allows*for*the* detection*and*appropriate*management*of*preUeclampsia.*The*majority*of*morbidity*and* mortality*associated*with*hypertensive*disorders*of*pregnancy*occurs*in*low*and*middleU income*countries*where*delays*in*triage,*transport,*and*treatment*present*significant* challenges.** * * * * * * * * * & & &

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15.&Diabetes&in&pregnancy&& & Primary*definition:** •$ Proportion*of*women*diagnosed*with*gestational*diabetes*(per*1000*births)* * Gestational*diabetes*(GDM)*is*defined*as*hyperglycemia*first*detected*during* pregnancy.*While*screening*protocols*and*diagnostic*criteria*vary*somewhat*around*the* world,*it*is*well*established*that*the*prevalence*of*GDM*is*increasing*in*highUincome* countries.*GDM*is*associated*with*increased*rates*of*infant*macrosomia,*shoulder* dystocia,*neonatal*hypoglycaemia*and*caesarean*delivery.*Women*with*GDM*are*also*at* an*increased*risk*of*developing*Type*II*diabetes*in*the*years*after*delivery.** * The*precise*prevalence*of*GDM*can*be*difficult*to*obtain*depending*on*the*data*sources* available.*In*the*USA,*states*that*use*the*2003*revised*birth*certificate*can*differentiate* between*GDM*and*preUpregnancy*diabetes.*However,*studies*indicate*that*the* sensitivity*of*the*birth*certificate*for*detecting*GDM*is*low*(48%).*GDM*prevalence*has* also*been*measured*using*patient*surveys*which*have*been*found*to*overestimate*the* prevalence*(24).** * * & 16.&Folic&acid&supplementation& & Primary*definition:** •$ Proportion*of*women*who*reported*taking*folic*acid*supplementation* preconception* * Other*definitions:** •$ Proportion*of*women*who*reported*taking*folic*acid*supplementation*in*the*first* three*months*of*pregnancy* * PreUconception*folic*acid*supplementation*significantly*reduces*the*risk*of*neural*tube* defects*(NTDs)*in*the*developing*foetus(25).*NTDs*occur*when*the*brain*and*skull*or* spinal*cord*and*spinal*column*do*not*develop*properly.*The*most*common*NTDs*are* anencephaly,*which*most*often*results*in*stillbirth,*or*spina*bifida,*which*can*lead*to*a* range*of*physical*disabilities.** * The*collection*of*this*indicator*requires*maternal*reporting*either*through*patient* records*or*surveys.*It*was*collected*as*part*of*the*Canadian*maternity*experiences* survey*(MES)*but*data*on*the*validation*of*the*MES*questions*in*northern*regions*is*not* available.** * & &

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17.&HIV&testing&during&pregnancy& & Primary*definition:** •$ Proportion*of*women*who*reported*having*HIV*testing*in*pregnancy* * Women*of*child*bearing*age*represent*an*increasing*proportion*of*new*HIV*positive* tests*in*many*regions*(26,*27).*With*appropriate*treatment,*mother*to*child* transmission*of*HIV*can*be*decreased*from*15U45%*to*less*than*2%*(27).** * Testing*uptake*varies*significantly*across*regions.*Accuracy*of*patient*reporting*may* differ*between*regions*that*use*optUin*vs.*optUout*HIV*testing*practices.** & & & 18.&Rate&of&spontaneous&abortions& * Primary*definitions:** •$ Proportion*of*all*pregnancies*which*end*in*spontaneous*abortion** * It*is*estimated*that*20%*of*clinically*recognized*pregnancies*end*in*spontaneous* abortion.*However,*this*is*likely*an*underestimate*as*many*pregnancy*losses*occur* before*the*pregnancy*is*recognized*(28).*The*etiology*of*spontaneous*abortions*includes* congenital*anomalies*(caused*by*chromosomal,*other*genetic,*or*extrinsic*factors* including*teratogen*exposure),*trauma,*maternal*diseases*or*maternal*uterine*structural* anomalies.*In*arctic*populations,*increased*exposure*to*environmental*toxins,*including* persistent*organic*pollutants*has*been*associated*with*increased*risk*of*spontaneous* abortion*(29).** * & & & & & & & & & & & & & & & &

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19.&Stillbirth& * Primary*definition:** •$ Fetal*deaths*(per*1000*total*births*>*28*weeks,*or*greater*than*or*equal*to*1000g* where*GA*is*not*available)* * Other*definitions:** •$ Fetal*deaths*per*1000*total*births*>*400g*or*20*weeks* •$ Fetal*deaths*at*or*after*22*completed*weeks*of*gestation*(or*BW*of*greater*than* or*equal*to*500g*where*GA*is*not*available)*per*1000*live*births*and*stillbirths* * Causes*of*stillbirth*are*multiple*and*include*congenital*anomalies,*placental*pathologies* including*abruption,*infection,*and*other*complications*of*pregnancy.*However,*a*large* proportion*(30U50%)*of*stillbirths*are*idiopathic.*Recording*of*fetal*deaths*varies*by* region*according*to*gestational*age*and*birth*weight.*There*is*also*interregional* variation*in*the*reporting*of*therapeutic*abortions,*leading*to*challenges*with* comparability.*Using*a*cut*off*of*28*weeks*GA*(or*1000g),*as*recommended*by*the*WHO* for*international*comparisons,*helps*to*improve*comparability.** * * * 20.&Perinatal&death&& & Primary*definition:** •$ Perinatal*mortality*(stillbirths*after*28*weeks*plus*neonatal*deaths*within*the* first*7*days*of*life)*per*1000*births* * Other*definitions:* •$ Perinatal*mortality*(stillbirths*after*22*completed*weeks*of*gestation*plus* neonatal*deaths*within*the*first*7*days*of*life)*per*1000*births* * Perinatal*mortality*has*traditionally*been*used*as*a*measure*of*the*quality*and* availability*of*antenatal*and*intraUpartum*care.*Measurement*and*comparison*of* perinatal*mortality*is*associated*with*the*same*challenges*as*the*measurement*and* recording*of*stillbirth*rates.*Recording*of*fetal*deaths*varies*by*region*according*to* gestational*age*and*birth*weight.*There*is*also*interregional*variation*in*the*reporting*of* therapeutic*abortions,*leading*to*challenges*with*comparability.*Using*a*cut*off*of*28* weeks*GA*(or*1000g),*as*recommended*by*the*WHO*for*international*comparisons,* helps*to*improve*comparability.** * * * * &

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21.&Preterm&birth&rate& & Primary*Definition:** •$ Proportion*of*all*births*at*less*than*37*weeks*GA* * Other*definitions:** •$ Distribution*of*live*births*and*fetal*deaths*at*each*completed*week*of*gestation* (starting*from*22*weeks)*{22U36*weeks;*37U41*weeks;*42+*weeks)* •$ Proportion*of*births*at*less*than*36*weeks*gestation* •$ Proportion*of*births*at*less*than*32*weeks*gestation* * Babies*born*before*37*weeks’*gestation*are*at*increased*risk*of*morbidity*and*mortality.* In*highUincome*countries,*the*majority*of*neonatal*deaths*are*secondary*to* complications*of*prematurity.* * Reporting*of*preterm*births*requires*consistent*evaluation*of*pregnancy*dates.*The* European*Peristat*system*uses*the*“best*obstetrical*estimate”*as*a*measure*of*dates*but* this*is*not*typically*accompanied*by*documentation*of*whether*this*is*based*on*a*clinical* or*ultrasound*assessment*(1).*Furthermore,*pregnancyUdating*practices*vary*with*access* to*ultrasound.** * * & 22.&Post&term&birth&rate&& & Primary*Definition:** •$ Proportion*of*all*births*at*greater*than*42*weeks*GA* * Compared*to*term*pregnancies,*post*term*pregnancies*are*associated*with*an*increased* risk*of*perinatal*morbidity*including*meconium*aspiration*syndrome,*postUprematurity* syndrome*and*macrosomia.*There*is*also*a*small*absolute*increased*risk*in*perinatal* mortality(30).*International*clinical*practice*guidelines*recommend*increased* surveillance*and*consideration*of*induction*of*labour*after*41*weeks*GA*(31U33).** ** Measurement*of*the*proportion*of*post*dates*pregnancies,*and*indeed*the*appropriate* management*of*post*dates*pregnancies*requires*accurate*pregnancy*dating.*Pregnancy* dating*practices*vary*between*regions,*particularly*as*access*to*early*pregnancy* ultrasound*differs.** & & & & * &

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23.&Induction&and&augmentation&of&labour& & Primary*definition:* •$ Mode*of*onset*of*labour*(spontaneous*vs.*induced*labour)*per*100*live*births*and* stillbirths* & Other*definitions:** •$ Rate*of*induction*of*labour* •$ Rate*of*patient*reported*augmentation*of*labour* •$ Proportion*of*women*undergoing*induction*of*labour*for*selected*primiparae* (women*aged*between*25*and*29*years*who*have*had*no*previous*deliveries,* with*a*vertex*presentation*and*a*gestation*length*of*37*to*41*weeks)* * There*has*been*increasing*concern*about*high*rates*of*obstetric*intervention,*including* induction*of*labour,*in*highUincome*countries.*While*recent*evidence*suggests*that* induction*of*labour*does*not*independently*increase*the*risk*of*caesarean*section*(34),*it* does*increase*the*need*for*other*interventions,*and*impact*a*woman’s*labour* experience*(31).* * Methodological*issues*may*affect*regional*or*international*comparisons,*including*what* procedures*are*included*in*the*definition*of*indication*of*labour*(for*example,*artificial* rupture*of*members*or*oxytocin*for*augmentation*are*included*in*reporting*of*induction* of*labour*in*some*regions).** * * 24.&VBAC&(after&single&previous&C/S)& & Primary*definitions:* •$ Proportion*of*multiparous&mothers*who*have*had*one*previous*caesarean,* whose*current*method*of*birth*was*either*an*instrumental*or*nonUinstrumental* vaginal*delivery** Rates*of*vaginal*birth*after*caesarean*section*are*intended*to*be*an*indicator*of* appropriateness*of*care.*It*is*recommended*that*women*who*have*had*one*previous* low*segment*caesarean*section*and*do*not*have*any*contraindications*to*vaginal* delivery*in*the*current*pregnancy*be*counselled*regarding*the*option*of*a*trial*of*labour.* * Higher*rates*of*VBAC*are*generally*associated*with*lower*overall*rates*of*caesarean* section.*Measurement*of*VBAC*is*frequently*possible*using*administrative*databases* and*most*observed*variation*represents*true*variations*in*VBAC*rate.*However,*other* clinical*information*affecting*the*success*of*a*trial*of*labour*is*not*always*available*and* so*appropriate*risk*adjustments*may*be*difficult*(35).* * * &

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25.&Instrumental&vaginal&deliveries&(vacuum/forceps)& * Primary*definition:** •$ Percentage*of*all*births*by*instrumental*vaginal*delivery*(subdivided*by*parity,* plurality,*presentation,*previous*caesarean*section,*and*gestational*age)* * Other*definitions:* •$ Percentage*of*women*giving*birth*by*vacuum*assisted*delivery* •$ Percentage*of*women*giving*birth*by*forceps*assisted*delivery* * There*is*substantial*regional*variation*in*the*use*of*operative*vaginal*delivery*(forceps,* vacuum*assisted*delivery).*Reduced*rates*of*operative*delivery*have*been*associated* with*use*of*a*partogram*in*labour*and*decreased*use*of*regional*analgesia.*However,*the* optimal*rate*of*operative*delivery*is*unknown.** * * & 26.&Caesarean§ion&rate& * Primary*definition:** •$ Percentage*of*all*births*(live*and*stillbirths)*by*caesarean*section*(subdivided*by* parity,*plurality,*presentation,*previous*caesarean*section,*and*gestational*age)* * Other*definitions:* •$ Percentage*of*live*births*delivered*by*caesarean*section*in*lowUrisk*pregnancies* (full*term,*singleton,*vertex*presentation)* •$ Percentage*of*live*births*delivered*by*repeat*caesarean*section* * Since*the*1970s,*there*has*been*a*substantial*rise*in*the*rate*of*caesarean*section*across* the*developing*world.*This*rise*has*raised*concerns*regarding*the*associated*increased* risk*of*placenta*accreta,*placenta*previa,*placental*abruption*and*stillbirth*in*future* pregnancies.*Caesarean*deliveries*are*also*associated*with*higher*costs.*The*use*of* caesarean*section*rate*as*a*performance*indicator*implies*that*lower*rates*represent* increased*appropriateness*and*efficiency.*However,*no*evidenceUbased*benchmark*is* available*against*which*C/S*rate*should*be*measured.** * Caesarean*section*rates*demonstrate*substantial*practice*variation*across*regions*when* administrative*databases*are*used.*Most*of*this*observed*variation*reflects*actual* variation*in*practice,*demonstrating*good*reliability.** * * * &

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27.&Maternal&mortality& & Primary*definition:** •$ Maternal*mortality*ratio*(MMR):*The*number*of*maternal*deaths*during*a*given* time*period*per*100,000*live*births*during*the*same*timeUperiod* * Other*definitions:** •$ Maternal*mortality*by*cause*of*death* There*is*wide*underreporting*of*maternal*deaths*in*routinely*collected*vital*statistics* (36,*37).*Because*of*this,*many*regions*(France,*Netherlands,*UK)*use*confidential* inquiries*to*obtain*complete*data*on*pregnancy*related*deaths.*These*inquiries*have* shown*that*approximately*half*of*maternal*deaths*are*related*to*substandard*care.** * * 28.&Post&partum&haemorrhage& & Primary*definition:** •$ Proportion*of*women*who*had*an*estimated*blood*loss*of*>1000*mL*at*delivery* * Other*definitions*identified*in*the*literature:* •$ Proportion*of*women*who*sustained*blood*loss*>500mL*following*a*vaginal*birth* •$ Proportion*of*women*who*sustained*blood*loss*>1000mL*following*a*vaginal* birth** •$ Proportion*of*women*who*sustained*blood*loss*>500mL*following*a*CUsection** •$ Proportion*of*women*who*sustained*blood*loss*>1000mL*following*a*CUsection** •$ Proportion*of*women*who*received*a*blood*transfusion* * Severe*post*partum*haemorrhage*(PPH)*is*a*leading*cause*of*maternal*morbidity*and* mortality*worldwide*including*in*high*income*countries*(38,*39).*It*is*defined*as*>500mL* following*a*vaginal*delivery*and*>1000mL*(or*>750mL*in*some*regions)*following*a* caesarean*delivery.*Despite*this*differentiation,*some*argue*that*the*physiologic*effects* of*post*partum*blood*loss*do*not*vary*by*mode*of*delivery*and*thus*suggest*that*a* unified*definition*be*used.*PPH*is*most*commonly*due*to*uterine*atony*but*can*also*be* due*to*retained*products*of*conception,*trauma*associated*with*delivery,*or*maternal* coagulopathy.*Management*of*PPH*varies*according*to*the*underlying*etiology.** * Estimation*of*blood*loss*at*birth*is*routinely*done*using*visual*estimates,*a*measure* which*has*been*shown*to*underestimate*blood*loss*(40).*While*ICD*codes*allow*for* differentiation*of*PPH*by*underlying*etiology,*most*regions*do*not*report*PPH*rates*by* etiology*(39).*Furthermore,*variation*in*the*definitions*used*to*classify*and*report*PPH* rates*makes*international*classification*difficult.** & &

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29.&Post&partum&depression& * Primary*definition:** •$ Proportion*of*women*who*scored*>*14*on*the*Edinburgh*Depression*scale** * Other*definitions*identified*in*the*literature:* •$ Proportion*of*women*who*reported*experiencing*post*partum*depression*& & Post*partum*depression*(PPD)*is*defined*by*the*presence*of*five*of*the*following* symptoms*within*four*weeks*of*delivery:*depressed*mood,*markedly*diminished*interest* or*pleasure*in*activities,*appetite*disturbance,*sleep*disturbance,*physical*agitation,* fatigue,*feelings*of*worthlessness*or*excessive*guilt,*decreased*concentration,*and* recurrent*thoughts*of*death*or*suicidal*ideation*(41).*Risk*factors*include*stressful*life* events,*past*episodes*of*depression*and*a*family*history*of*mood*disorders.*Post*partum* mental*illness*has*significant*implications*for*women*and*families*(42).** * The*Edinburg*Postnatal*Depression*Scale*is*a*10Uitem*screening*tool*that*has*been*used* in*some*maternity*survey*to*estimate*the*population*prevalence*of*post*partum* depression.*While*the*cutUoff*scores*used*vary*in*the*literature,*a*cutUoff*score*of*15*or* greater*is*recommended*for*English*speaking*women*to*indicate*a*high*likelihood*of* PPD.*The*use*of*the*scale*has*been*validated*as*an*effective*screening*tool*in*indigenous* women*in*Greenland*and*Canada*(43,*44).* & & 30.&Post&partum&infections&& & Primary*definition:** •$ Proportion*of*women*who*suffered*a*surgical*site*infection*within*30*days*of* caesarean*section** * Other*definitions:* •$ Proportion*of*women*who*suffered*any*of*the*following*post*partum*infections:* UTI,*breast,*wound,*endometritis& & Routine*surveillance*of*hospitalUassociated*infections*provides*important*information* for*quality*improvement*initiatives*and*has*been*associated*with*reductions*in*rates*of* surgical*site*infection*and*other*nosocomial*infections*(45).*Many*surveillance*systems* utilize*administrative*databases*for*monitoring*of*infections*that*occur*during*hospital* stays.*However,*most*post*partum*and*surgical*site*infections*occur*after*hospital* discharge.*Decreased*hospital*stays*associated*with*childbirth*may*further*reduce*the* sensitivity*of*such*surveillance*systems.*The*Norwegian*surveillance*program*for* infections*in*hospitals*and*the*Canadian*Patient*Safety*Institute*both*utilize*30*day* follow*up*tools*to*identify*wound*infections*that*occur*after*hospital*discharge*(46,*47).** &

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31.&Maternal&readmissions&to&hospital& & Primary*definition:** •$ Risk*adjusted*rate*of*readmission*to*hospital*after*an*admission*for*obstetric* indications** * Other*definitions:* •$ 30Uday*obstetric*readmission*rate* * Readmission*to*hospital*can*be*influenced*by*effective*use*of*communityUbased*care* and*quality*of*both*inpatient*and*outpatient*care.*Readmission*rates*are*used*in*many* fields*as*an*indicator*of*healthcare*quality*(48).** * * 32.&Post&partum&contraception& * Primary*definition:** •$ Proportion*of*women*using*birth*control*postpartum* * Unintended*pregnancies*make*up*approximately*50%*of*all*pregnancies*in*North* America(3).*This*statistic*is*even*higher*in*some*circumpolar*regions*as*indicated*by*high* rates*of*therapeutic*abortions*in*Greenland*(49,*50).*The*post*partum*period*is*a*crucial* opportunity*to*provide*access*to*contraception*and*empower*women*to*make*choices* about*birth*spacing.** * * * * * * * * * * * * * * * * * * & &

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33.&Neonatal&mortality&& * Primary*definition:** •$ Neonatal*death*(from*birth*to*28*days*of*life)*per*1000*live*births*at*or*after*24* weeks*GA*(or*greater*than*500g*if*GA*is*not*available)* * Other*definitions:** •$ Neonatal*death*(from*birth*to*28*days*of*life)*per*1000*live*births*at*or*after*22* weeks*GA*(or*greater*than*500g*if*GA*is*not*available)** •$ Early*neonatal*death*(from*birth*to*24*hours*of*life)*per*1000*live*births* •$ Early*neonatal*death*(from*birth*to*7*days*of*life)*per*1000*live*births* * Neonatal*morality*is*thought*to*be*an*indicator*of*newborn*care*as*well*as*a*reflection*of* prenatal*and*intraUpartum*care.*The*most*common*causes*of*neonatal*death*in*highU income*countries*are*congenital*anomalies*and*complications*secondary*to*prematurity.* However,*rates*of*neonatal*mortality*are*also*heavily*influenced*by*access*to*adequate* obstetrical*care.** * About*1/3*of*neonatal*deaths*in*Europe*are*babies*born*before*28*weeks*of*age*(1).* Heterogeneity*of*birth*and*death*registration*at*early*gestations*between*regions*makes* international*comparisons*before*24*weeks*quite*difficult.*Differences*in*access*to* abortions*for*congenital*anomalies*and*interUregional*variations*in*care*of*very*preterm* infants*may*also*influence*reliability*of*reporting.** * & & & & & & & & & & & & & & & & & & & &

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34.&Congenital&anomalies& * Primary*definition:** •$ Prevalence*of*major*congenital*anomalies* * Other*definitions:** •$ Prevalence*of*maldescendant*testes,*hypospadias,*epispadias,*anogenital* distance* •$ Prevalence*of*congenital*syphilis** •$ Terminations*of*pregnancy*for*congenital*anomalies** * The*most*common*congenital*anomalies*worldwide*include*heart*defects,*neural*tube* defects,*and*Down*syndrome.*They*can*result*in*death*or*longUterm*disability,*with* significant*longUterm*effects*on*individuals,*families,*and*health*care*systems.*Some* congenital*anomalies*can*be*prevented*through*adequate*antenatal*care.* * National*or*regional*surveillance*systems*for*birth*defects*exist*in*most*Northern* regions.*However,*differing*data*collection*and*reporting*strategies*make*international* comparability*challenging*(51).*Furthermore,*variation*in*prenatal*diagnosis*and* practices*and*laws*around*termination*of*pregnancy*for*fetal*anomalies*introduce* significant*interregional*variation.** * * * 35.&Small&for&Gestational&Age&Infants& & Primary*definition:** •$ Proportion*of*live*born*singleton*newborns*weighing*<10th%ile*for*GA* * Other*definitions:** •$ Proportion*of*live*born*infants*weighting*<10th%ile*for*GA* •$ Distribution*of*birth*weight*by*gestational*age* * Small*for*gestational*age*infants*are*those*with*a*birth*weight*that*is*less*than*the* 10th%ile*for*gestational*age*and*sex.*Infants*may*be*small*for*gestational*age*due*to* genetic*factors*or*due*to*intrauterine*growth*restriction.*It*is*most*commonly*associated* with*maternal*hypertensive*disorders*of*pregnancy*but*is*also*associated*with*social* factors*such*as*income*and*urban*residence*(52).* * Measurement*and*reporting*of*SGA*infants*requires*both*an*accurate*assessment*of* pregnancy*dates*as*well*as*calculation*of*reference*birth*weights.** & &

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& 36.&Low&birth&weight&infants&& * Primary*definition:** •$ Proportion*of*live*born*infants*weighing*<2500g* * Other*definitions:* •$ Very*low*birth*weight*–*proportion*of*live*born*infants*weighing*<1500g* •$ Proportion*of*live*born*infants*weighing*500U2500g* * Low*birth*weight*babies*are*at*higher*risk*of*poor*perinatal*outcomes*and*of*longUterm* developmental*challenges*and*so*LBW*has*long*been*used*as*an*indicator*of*MCH.*Low* birth*weight*is*associated*with*hypertensive*disorders*of*pregnancy,*congenital* anomalies,*multiple*pregnancies,*and*maternal*smoking.** * Birth*weight*is*typically*measured*and*recorded*accurately.*However,*low*birth*weight* can*be*due*to*prematurity*or*fetal*growth*restriction.*Some*term*infants*may*also*be* constitutionally*small.*Reporting*on*the*proportion*of*LBW*babies*does*not*distinguish* between*these*entities.*Some*MCH*indicator*sets*utilize*SGA*and*PTB*over*LBW*in*order* to*better*delineate*the*etiology*of*LBW.** * * & 37.&Large&for&gestational&age&infants&& & Primary*definition:** •$ Proportion*of*live*born*singleton*newborns*weighing*>90th*%ile*for*GA* * Other*definitions:** •$ High*birth*weight*infants:*Proportion*of*live*born*infants*weighing*>4000g* * Mothers*with*large*for*gestational*age*(LGA)*infants*are*at*increased*risk*of*prolonged* labour,*shoulder*dystocia,*and*caesarean*delivery.*Delivery*of*a*large*for*gestational*age* infant*is*influenced*by*maternal*preUpregnancy*BMI,*maternal*weight*gain*in*pregnancy,* preUexisting*and*gestational*diabetes,*young*maternal*age*and*increased*parity*(53,*54).* * Measurement*and*reporting*of*LGA*infants*requires*both*an*accurate*assessment*of* pregnancy*dates*as*well*as*calculation*of*reference*birth*weights.** & * * * * *

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* 38.&Five&minute&Apgar&score&<7& * Primary*definition* •$ Proportion*of*newborns*with*5*minute*Apgar*score*<*7* * Other*definitions:** •$ Distribution*of*Apgar*scores*at*5*minutes* * Apgar*scores*are*a*newborn*assessment*that*includes*respiratory*effort,*tone,*reflex* irritability*and*colour.*It*is*assessed*at*1,*5*and*10*minutes*of*life*in*most*regions.*The* Apgar*score*at*5*minutes*is*correlated*with*rate*of*neonatal*mortality*(1)*although*it* should*be*noted*that*a*low*Apgar*score*cannot*be*used*to*predict*future*neurological* outcome*in*an*individual*infant.*Numerous*factors*can*influence*the*Apgar*score* including*maternal*anaesthesia,*congenial*malformations,*gestational*age,*trauma,*and* intra*observer*variability.*It*thus*cannot*be*considered*to*be*direct*evidence*of*birth* asphyxia*(55).** * * * 39.&NICU&admissions& & Primary*definition* •$ Proportion*of*newborns*requiring*admission*to*a*neonatal*intensive*care*unit* (NICU)* * Other*definitions*identified:** •$ Proportion*of*newborns*requiring*NICU*admission*for*>7*days* •$ Proportion*of*indigenous*newborn*term*babies*admitted*to*special*care*for* longer*than*for*hours** & Neonatal*intensive*care*units*provide*important*care*for*newborns*requiring*specialized* medical*attention.*Due*to*the*high*level*of*intensive*care*provided,*NICU*stays*account* for*a*significant*proportion*of*newborn*care.*Increased*likelihood*of*NICU*admission*has* been*associated*with*a*variety*of*factors*including*multiple*births,*preterm*births,*low* birth*weight*and*small*for*gestational*age*births.*There*is*also*significant*variation*in* NICU*admissions*between*regions*(56).** * & & & & & &

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40.&Neonatal&readmission&to&hospital& & Primary*definition* •$ Rate*of*neonatal*hospital*readmission*after*discharge*following*birth* * Other*definitions*identified* •$ Maternal*reported*need*for*readmission*to*hospital** * Readmission*to*hospital*can*be*affected*by*effective*use*of*communityUbased*care*and* quality*of*both*inpatient*and*outpatient*care.*Readmission*rates*are*used*in*many*fields* as*an*indicator*of*healthcare*quality*(48).*For*newborn*care,*early*discharge*has*become* increasingly*common.*Some*studies*have*found*an*association*between*policies*of*early* discharge*from*hospital*and*increased*rates*of*neonatal*readmission*(57).** & *

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Safety:** * 41.&Births&without&obstetric&intervention& * Primary*definition* •$ Proportion*of*births*occurring*without*obstetric*intervention** * Other*definitions*identified* •$ Proportion*of*women*having*a*“normal”*birth** * In*recent*years*concern*has*been*raised*about*increasing*rates*of*obstetric*intervention* (including*induction*and*augmentation*of*labour,*instrumental*vaginal*deliveries*and* caesarean*sections)*and*the*associated*impact*on*health*care*costs*and*patient*safety.* The*definition*of*what*constitutes*“obstetric*intervention”*varies*in*the*literature*and* little*evidence*is*available*on*its*use*as*a*performance*indicator.** & 42.&Perineal&trauma** * Primary*definition* •$ Proportion*of*women*delivering*vaginally*who*had*a*3rd*or*4th*degree*tear* * Other*definitions:** •$ Proportion*of*women*delivering*vaginally*who*had*a*tear*(stratified*by*degree)* •$ Rate*of*obstetric*trauma*with*instrument** •$ Proportion*of*women*delivering*vaginally*who*had*an*episiotomy* * Obstetric*anal*sphincter*injuries*may*be*associated*with*significant*morbidity*including* anal*incontinence,*rectovaginal*fistula,*and*pain.*Their*incidence*is*affected*by*many* factors*including*individual*tissue*quality,*speed*of*delivery,*and*use*of*instrumentation.* The*proportion*of*women*who*suffer*third*or*fourth*degree*tears*is*intended*as*an* indicator*of*safety*and*is*used*by*many*performance*reporting*agencies*internationally.* Indicator*results*have*demonstrated*significant*practice*variation.*Adjustment*for*case* mix*has*been*used*to*identify*unwarranted*variation*(58).*However,*variation*has*also* been*attributed*to*significant*differences*in*detection*rates.*Studies*using*endoanal* ultrasound*have*demonstrated*that*as*many*as*one*third*of*all*women*delivering* vaginally*have*suffered*some*injury*to*the*anal*sphincter*complex*(59).** The*use*of*episiotomy*increased*in*the*first*half*of*the*20th*century.*However,*restrictive* (rather*than*routine)*use*of*episiotomy*has*been*associated*with*decreased*rates*of* severe*perineal*trauma,*and*fewer*healing*complications*(60).*In*Europe,*it*has*been* noted*that*there*is*often*no*way*to*distinguish*between*“no*episiotomy”*and*missing* data*or*between*midline*and*mediolateral*episiotomy(1).**

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Responsiveness:** * 43.&Characteristics&of&care&providers:& * Primary*definition* •$ Proportion*of*Aboriginal*people*in*the*health*workforce* * Other*definitions:** •$ Number*of*Aboriginal*people*training*in*healthUrelated*disciplines* •$ Number*of*midwives*(per*100*000*population)* * Improving*representation*of*Aboriginal*people*in*the*health*work*force*has*been* discussed*as*an*important*step*toward*improving*cultural*competency*and*the*capacity* of*the*health*system*to*meet*the*needs*of*Aboriginal*patients.*The*measurement*and* reporting*of*this*indicator*is*part*of*a*new*health*systems*performance*framework* focused*on*the*health*of*Australian*Aboriginal*and*Torres*Strait*Islanders.*It*is*thus* relatively*new*and*information*on*its*scientific*properties*as*an*indicator*is*limited.** Midwives*play*an*important*role*in*improving*the*accessibility*of*high*quality*care*in* many*regions.*In*remote*regions,*Aboriginal*midwives*provide*important*community* based*maternity*care.** * * 44.&Cultural&competency& & Primary*definition:** •$ Proportion*of*health*care*services*with*cultural*safety*policies*or*processes*in* place*{These*policies*and*processes*include*the*following:*utilization*of* community*feedback*mechanisms,*employment*of*local*Aboriginal*peoples,* cultural*orientations*for*nonUindigenous*staff,*formal*organizational*commitment* to*culturally*safe*healthcare,*mechanisms*for*highUlevel*advice*on*cultural* matters*affecting*service*delivery,*formal*cultural*safety*polices,*and*cultural* competence*as*part*of*staff*performance*appraisal}** & Improving*the*cultural*competency*of*systems,*organizations,*and*providers*is*an* important*step*toward*improving*the*effectiveness*of*care*received*by*Aboriginal* peoples.*However,*there*is*little*available*evidence*regarding*the*measurement*and* reporting*of*cultural*competency*as*a*performance*measure*or*on*the*effectiveness*of* interventions*intended*to*improve*cultural*competency*(61).** & & & & &

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45.&Patient&reported&unfair&treatment&based&onðnicity& * Primary*definition:** •$ Proportion*of*patients*who*selfUreported*an*experience*of*unfair*treatment*by*a* health*professional*on*the*basis*of*ethnicity*& & The*Australian*Aboriginal*and*Torres*Strait*Islander*Health*Performance*Framework* include*this*patient*reported*outcome*as*an*indicator*of*cultural*competency.*It*is*not* specific*to*any*one*facet*of*healthcare*and*little*information*is*available*on*the*scientific* properties*of*the*indicator*or*its*use*in*other*regions*(62).** & & 46.&Patient&reported&support&during&labour&and&birth& * Primary*definition:** •$ Patient*reported*support*during*labour*and*birth*(husband/partner*vs.*other* support*person)* & One*to*one*support*during*labour*has*been*associated*with*an*increased*likelihood*of* vaginal*birth,*decreased*need*for*analgesia*in*labour*and*increased*satisfaction*with* their*birth*experience*(63).*In*the*Canadian*Maternity*Experiences*Survey,*women*in* Northern*regions*were*less*likely*to*have*a*support*person*present.*This*finding*is* consistent*with*the*escort*policies*pertaining*to*women*who*have*had*to*travel*for* labour*and*birth.*There*is*little*available*data*on*the*reliability*or*validity*of*this* indicator.** * & 47.&Use&of&analgesia&in&labour& & Primary*definition:** •$ Epidural*rate*for*vaginal*deliveries** * Other*definitions:** •$ Use*of*inhalational,*opioid*and*epidural*analgesia*in*labour* •$ Patient*reported*pain*management*for*labour* * Use*of*analgesia*can*be*influenced*by*maternal*preferences*and*availability*or*pain* management*options.*In*a*review*of*38*randomized*controlled*trials,*epidural*analgesia* in*labour*was*associated*with*improved*maternal*satisfaction*with*analgesia*but*was* also*associated*with*a*small*increase*in*the*risk*of*assisted*vaginal*delivery,*need*for* oxytocin*administration,*and*a*small*increase*in*the*duration*of*the*second*stage*of* labour(64).*Epidural*rates*vary*considerably*between*regions*(65)*but*other*information* regarding*the*use*of*epidural*rate*as*a*performance*indicator*is*limited.** &

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48.&Mother`infant&contact&at&birth& * Primary*definition:** •$ Proportion*of*women*who*reported*that*they*were*able*to*hold*their*baby* within*five*minutes*of*birth*(excluding*infants*admitted*to*the*NICU)* * Other*definitions:* •$ Proportion*of*women*who*reported*that*they*had*skin*to*skin*contact*with*their* baby*when*they*first*held*them* * Early*skinUtoUskin*contact*has*been*shown*to*improve*breastUfeeding*initiation*and* duration*of*breastUfeeding.*Late*preterm*infants*who*have*early*skinUtoUskin*contact*are* more*likely*to*have*good*cardioUrespiratory*stability*than*infants*without*early*skinUtoU skin*contact*(53).*SkinUtoUskin*contact*is*part*of*the*WHO*10Usteps*to*successful*breast* feeding*and*comprises*part*of*the*baby*friendly*hospital*initiative.* * Little*information*is*available*on*the*measurement*properties*of*these*process* indicators.** * * 49.&Presence&of&breastfeeding&support&programs& & Primary*indicator:** •$ Proportion*of*babies*born*in*hospitals*that*have*received*the*“baby*friendly* hospital*initiative”*or*similar*designation* * Other*definitions:** •$ Measurement*of*worksite*lactation*programs* •$ Availability*of*lactation*care*in*birthing*facilities* •$ Proportion*of*mothers*who*reported*having*enough*information*about* breastfeeding.** * Breastfeeding*provides*important*nutritional,*psychosocial,*and*immunological*benefits* for*infants*and*mothers.*The*WHO*currently*recommends*exclusive*breastfeeding*until* 6*months*of*age.#Public*health*policies,*healthcare*practices,*and*community* infrastructure*have*the*potential*to*influence*the*establishment*and*maintenance*of* breastfeeding*(21).*Process*indicators*are*thus*utilized*to*show*how*breastfeeding*is* being*supported.** * Little*information*is*available*on*the*measurement*properties*of*these*process* indicators.** & &

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50.&Patient&reported&satisfaction&with&care& * Primary*indicator:** •$ Proportion*of*women*who*reported*being*satisfied*with*their*birth*experience* and*care* * Other*definitions:** •$ Proportion*of*women*who*reported*being*satisfied*with*their*postpartum*care* * As*health*systems*seek*to*provide*increasingly*patient*centred*care,*patient*satisfaction* has*become*a*sought*after*measure.*However,*satisfaction*can*be*influenced*by*many* different*processes*and*outcomes*of*care*and*can*be*complex*to*measure*and*should* not*be*considered*a*representation*of*patient*perceived*quality*of*care*(66).*Despite*the* interest*in*evaluating*patient*satisfaction*with*care,*there*is*no*widely*used*tool*that*has* been*validated*in*the*context*of*maternity*care.** &

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& Accessibility:** & 51.&Frequency&and&timing&of&antenatal&care& & Primary*definition:** •$ Proportion*of*all*pregnant*women*(with*live*or*stillborn*infants)*who*received* antenatal*care*in*the*first*trimester** * Other*definitions:** •$ Percentage*of*mothers*who*gave*birth*at*32*weeks*or*more*who*attended*at* least*one*antenatal*visit*in*the*first*trimester*(<13*weeks)* •$ Proportion*of*pregnant*women*attending*their*first*antenatal*visit*at*or*before* 20*weeks*gestation** •$ Percentage*of*women*who*gave*birth*at*32*weeks*or*more*who*have*attended*5* more*antenatal*visits* •$ Proportion*or*women*attending*less*than*four*antenatal*visits* •$ Distribution*of*timing*of*first*antenatal*visit* •$ Mean*number*of*prenatal*visits* •$ Proportion*of*primiparous*women*who*reported*attending*prenatal*classes* •$ Percentage*of*children*born*at*term*(after*36*full*weeks*of*gestation)*whose* mother*received*recommended*prenatal*care*during*pregnancy*by*midwife* * The*objective*of*prenatal*care*is*to*screen*for,*prevent,*and*treat*possible*complications* of*pregnancy.*Evidence*supporting*what*comprises*best*practice*for*prenatal*care* (frequency*and*content)*is*not*clear.*However,*an*early*first*visit*has*become*accepted* standard*of*care*in*many*regions.** * Uptake*of*early*antenatal*care*is*considered*an*indicator*of*access*to*care.*It*can*be* influenced*by*maternal*socioeconomic*status*or*by*organization*of*care*(67).*Reliability* and*comparability*challenges*include*different*definitions*of*when*and*how*antenatal* visits*are*reported.*Furthermore,*there*is*no*accepted*standard*of*content*covered*at*a* first*antenatal*visit.** * * * * * * * * * *

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52.&Prenatal&care&provider& Primary*definition:** •$ Patient*reported*provider*for*prenatal*care** * Obstetricians,*family*physicians,*midwives,*or*nurses*can*provide*prenatal*care.*The* availability*of*each*type*of*provider*and*the*ability*of*patients*to*choose*their*provider* varies*by*region.*In*rural*and*remote*regions,*patients*may*have*little*or*no*choice*of*the* provider.** By*asking*patients*to*choose*one*type*of*provider,*any*model*of*shared*care*is*not* captured.** & & & 53.&Use&of&antenatal&ultrasound& & Primary*definition:** •$ Proportion*of*women*who*report*having*had*at*least*one*ultrasound*in* pregnancy* * Other*or*related*indicators:* •$ Mean*number*of*ultrasounds*per*pregnancy*(based*on*patient*reported*number* of*ultrasounds)* •$ Mean*gestational*age*at*first*ultrasound* •$ Proportion*of*women*receiving*a*dating*ultrasound** •$ Proportion*of*women*receiving*a*comprehensive*anatomy*ultrasound** * Pregnancy*ultrasounds*can*be*indicated*for*dating,*prenatal*genetic*screening,*to*assess* fetal*anatomy,*growth*and*wellbeing,*and*to*assess*multiple*gestations*or*placental* location.*Accurate*pregnancy*dating*can*improve*neonatal*outcomes*and*is*an* important*practice*fore*research*and*performance*measurement.*First*trimester* ultrasound*is*the*most*accurate*method*to*establish*or*confirm*gestational*age.*Use*of* ultrasound*between*10*and*14*weeks*may*be*included*in*screening*for*fetal*aneuploidy* resulting*in*fewer*false*positives*than*laboratory*tests*alone.*Guidelines*on*the* appropriate*number*and*timing*of*ultrasounds*vary*by*region.*The*World*Health* Organization*recommends*a*single*ultrasound*at*approximately*18*weeks.*Other* indications*for*prenatal*ultrasound*may*arise*at*anytime*during*pregnancy.** * Use*of*ultrasound*varies*significantly*by*region*(19)*and*is*likely*related*to*access.* However,*there*is*little*available*information*on*validity*or*reliability*of*these*indicators.** & & & &

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54.&Induced&abortions&& & Primary*definition:** •$ Induced*abortion*ratio*(CDC*definition):*Number*of*induced*abortions*per*1000* live*births** * Other*definitions:* •$ Induced*abortion*rate:*Number*of*induced*abortions*per*1000*women*aged*15U 44*years* * Surveillance*of*induced*abortions*can*be*used*to*assess*access*to*safe*abortion*services* and*to*identify*groups*at*high*risk*of*unintended*pregnancy(49).*The*frequency*and* reporting*induced*abortions*varies*widely*by*region*based*on*regional*laws,*reporting* practices*and*access*to*services.** * * 55.&Birth&attendant&& & Primary*definition:** •$ Proportion*of*women*giving*birth*with*a*skilled*birth*attendant* * Other*definitions:* •$ Patient*reported*type*of*birth*attendant*(Physician,*nurse,*midwife,*community* midwife,*other)* * Skilled*birth*attendants*include*obstetricians,*family*physicians,*midwives,*nurses*or* skilled*community*health*workers*who*are*trained*to*provide*intrapartum*care.*The* availability*of*each*type*of*provider*and*the*ability*of*patients*to*choose*their*provider* varies*by*region.*In*rural*and*remote*regions,*patients*may*have*little*or*no*choice*of* birth*attendant.*Births*attended*by*midwifes*are*less*likely*to*be*associated*with* obstetrical*interventions*than*births*attended*by*physicians.*When*adjusted*for*case* mix,*neonatal*outcomes*are*similar*between*types*of*providers.** & & & & & & & & & & & &

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56.&FHR&monitoring&during&labour& & Primary*definition:** •$ Patient*reported*use*of*electronic*fetal*monitoring*(continuous*vs.*intermittent* vs.*none)* * Intra*partum*monitoring*of*the*fetal*heart*rate*is*used*to*assess*fetal*wellbeing*during* labour.*In*highUincome*countries,*continuous*electronic*fetal*monitoring*(EFM)*is* commonly*used.*Current*evidence*suggests*that*compared*with*intermittent* auscultation,*continuous*electronic*fetal*monitoring*during*low*risk*labours*increases* the*use*of*obstetric*intervention*without*a*corresponding*improvement*in*outcomes* (68).** * There*is*little*information*available*on*the*validity*or*reliability*of*patient*reporting*for* assessment*of*FHR*monitoring*in*labour.** & & 57.&Place&or&setting&for&birth** * Primary*definition:** •$ Distribution*of*births*by*location*and*size*of*maternity*unit*(home*vs.*maternity* unit*stratified*by*number*of*births/year)* * Other*definitions:** •$ Proportion*of*women*who*gave*birth*in*community*health*centres*or*in*other* nonUhospital*settings* •$ Discharges*from*hospital*where*main*diagnosis*was*due*to*childbirth*and*the* pureperium** * This*indicator*is*used*in*Europe*as*a*means*to*measure*the*impact*of*maternity*unit* closures.*Around*the*world,*and*particularly*in*remote*areas,*there*has*been*debate* about*whether*or*not*the*size*of*maternity*units*is*related*to*the*quality*of*care* provided.*Building*evidence*suggests*that*for*low*risk*births,*midwifeUled*units*achieve* similar*outcomes*to*larger*obstetricianUled*units*as*long*as*a*wellUorganized*referral* system*permits*transfers*when*necessary*(69,*70).*For*women*with*pregnancy*related* complications,*large*centralized*units*provide*easier*access*to*specialized*care.* However,*centralization*of*births*to*a*small*number*of*units*will*increase*the*need*to* travel*for*care*and,*in*some*cases,*may*increase*the*number*of*out*of*hospital*births* that*occur*(71).** * & & & &

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58.&Travel&to&place&of&birth& & Primary*definition:** •$ Proportion*of*women*that*report*having*to*travel*>100km*to*place*of*birth* * Other*definitions:* •$ Proportion*of*women*required*to*leave*their*community*for*birth** •$ Proportion*of*women*required*to*leave*their*region*for*birth** •$ Mean*“days*away*from*home”** * In*an*attempt*to*provide*care*to*highly*scattered*populations,*many*northern*systems* have*seen*progressive*centralization*of*care.*This*has*led*to*a*decrease*in*locally* availably*maternity*services*in*rural*and*remote*areas*and*the*practice*of*routinely* evacuating*pregnant*women*for*labour*and*birth.*In*Canada,*this*practice*has*been* shown*to*have*detrimental*psychosocial*and*cultural*effects*on*women,*their*families* and*the*wider*community*without*a*corresponding*improvement*in*health*outcome*(72U 74).** * Worldwide,*this*indicator*is*not*frequently*reported*and*there*is*little*information* available*on*the*validity*or*reliability*of*its*use.** & & & 59.&Postpartum&visit& * Primary*definition:** •$ Proportion*of*women*that*report*having*attended*a*postpartum*follow*up*visit** * Other*definitions:** •$ Number*of*post*partum*visits** * The*postpartum*period*(the*first*6*weeks*after*birth)*is*an*important*time*for*mother* and*baby.*It*is*an*opportunity*to*detect*postpartum*complications,*promote*health* behaviours,*and*discuss*postpartum*contraception.*However,*it*is*a*frequently*neglected* area*of*service*provision.** * In*an*international*context,*this*indicator*has*been*shown*to*be*responsive*to*change* when*administrative*data*is*used.*However,*the*validity*and*reliability*of*using*patient* surveys*for*this*purpose*is*not*available.** * * * *

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Cost:* * 60.&Cost&of&maternity&care&per&patient& & Primary*definition:*Unit*cost*of*maternity*(adjusted*for*case*mix*and*market*forces)** * Cost*is*typically*excluded*from*measures*of*healthcare*quality*but,*in*situations*of*limited* resources,*can*be*an*important*consideration.*Individual*interventions*are*frequently*evaluated* in*terms*of*efficiency*or*costUeffectiveness.** * Calculating*the*cost*of*care*frequently*takes*into*account*the*cost*of*services*paid*for*by*private* or*public*insurance*plans.*Out*of*pocked*expenses*incurred*by*patients*may*not*always*be* included.** & & 61.&Maternal&Length&of&stay& & Primary*definition:** •$ Proportion*of*women*staying*<*3*days*in*hospital*after*childbirth* * Other*definitions:* •$ Proportion*of*women*staying*<2*days*in*hospital*after*a*vaginal*birth*or*less*than*<4* days*after*a*caesarean*section* •$ Average*length*of*stay*for*pregnancy*and*childbirth* * The*average*length*of*stay*in*hospitals*is*frequently*used*as*an*indicator*of*efficiency.*Shifting* care*from*inpatient*to*outpatient*services*where*possible*is*less*costly.*It*is*important*to*adjust* for*case*mix*such*that*patients*with*pregnancy*or*post*partum*complications*are*removed*from* the*analysis*or*are*considered*appropriately.*Furthermore,*decreases*in*length*of*stay*that* result*in*increased*readmission*rates*must*be*considered*(75).* & && 62.&Neonatal&length&of&stay& * Primary*definition:** •$ Proportion*of*neonates*being*discharged*from*hospital*within*48*hours*of*birth* * The*average*length*of*stay*in*hospitals*is*frequently*used*as*an*indicator*of*efficiency.*Shifting* care*from*inpatient*to*outpatient*services*where*possible*is*less*costly.*It*is*important*to*adjust* for*case*mix*such*that*patients*with*pregnancy*or*post*partum*complications*are*removed*from* the*analysis*or*are*considered*appropriately.*Furthermore,*decreases*in*length*of*stay*that* result*in*increased*readmission*rates*must*be*considered*(75).* * *

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References*

1. Euro-Peristat Project with SCPE and EUROCAT. European Perinatal Health Report. Health and care of pregnant women and babies in Europe in 2010. 2013.

2. Olausson PMO, Cnattingius S, Goldenberg RL. Determinants of poor pregnancy outcomes among teenagers in Sweden. Obstet Gynecol. 1997;89(3):451-7.

3. Finer LB, Zolna MR. Unintended pregnancy in the United States: incidence and disparities, 2006. Contraception. 2011;84(5):478-85.

4. Huang L, Sauve R, Birkett N, Fergusson D, van Walraven C. Maternal age and risk of stillbirth: a systematic review. CMAJ. 2008;178(2):165-72.

5. Ovesen P, Rasmussen S, Kesmodel U. Effect of prepregnancy maternal overweight and obesity on pregnancy outcome. Obstet Gynecol. 2011;118(2, Part 1):305-12.

6. Stothard KJ, Tennant PW, Bell R, Rankin J. Maternal overweight and obesity and the risk of congenital anomalies: a systematic review and meta-analysis. JAMA. 2009;301(6):636-50.

7. American College of Obstetricians and Gynecologists. ACOG Committee opinion no. 548: Weight gain during pregnancy. Obstet Gynecol. 2013;121(1):210.

8. Leon Feinstein RS, Tashweka M. Anderson, Annik Sorhaindo, Cathie Hammond, . What are the effects of education on health? Organization for Economic Cooperation and Development (OECD), 2006.

9. National Clearinghouse on Family Violence, Health Canada. National Clearinghouse on Family Violence. 1997.

10. Janssen PA, Holt VL, Sugg NK, Emanuel I, Critchlow CM, Henderson AD. Intimate partner violence and adverse pregnancy outcomes: a population-based study. Am J Obstet Gynecol. 2003;188(5):1341-7.

11. Rabin RF, Jennings JM, Campbell JC, Bair-Merritt MH. Intimate partner violence screening tools: a systematic review. Am J Preventive Medicine. 2009;36(5):439-45. e4.

12. Lumley J, Chamberlain C, Dowswell T, Oliver S, Oakley L, Watson L. Interventions for promoting smoking cessation during pregnancy. The Cochrane Library. 2009.

13. Wong S, Ordean A, Kahan M. SOGC clinical practice guidelines: Substance use in pregnancy: no. 256, April 2011. Int J Gynaecol Obstet. 2011;114(2):190-202.

14. Canadian centre on substance abuse. Substance Use during Pregnancy. 2016 [cited 2015 Dec]. Available from: http://www.ccsa.ca/Eng/topics/Treatment-and-Supports/Substance-Use- during-Pregnancy/Pages/default.aspx.

138

15. Lee D-H, Lee I-K, Song K, Steffes M, Toscano W, Baker BA, et al. A strong dose- response relation between serum concentrations of persistent organic pollutants and diabetes results from the National Health and Examination Survey 1999–2002. Diabetes Care. 2006;29(7):1638-44.

16. Tan J, Loganath A, Chong YS, Obbard JP. Exposure to persistent organic pollutants in utero and related maternal characteristics on birth outcomes: a multivariate data analysis approach. Chemosphere. 2009;74(3):428-33.

17. Nast I, Bolten M, Meinlschmidt G, Hellhammer DH. How to measure prenatal stress? A systematic review of psychometric instruments to assess psychosocial stress during pregnancy. Paediatr Perinat Epidemiol. 2013;27(4):313-22.

18. Chen MJ, Grobman WA, Gollan JK, Borders AE. The use of psychosocial stress scales in preterm birth research. Am J Obstet Gynecol. 2011;205(5):402-34.

19. Public Health Agency of Canada. What Mothers Say: The Canadian Maternity Experiences Survey. Ottawa: 2009.

20. Vallenas C, Savage F. Evidence for the ten steps to successful breastfeeding. 1998.

21. Renfrew MJ, McCormick FM, Wade A, Quinn B, Dowswell T. Support for healthy breastfeeding mothers with healthy term babies. The Cochrane Library. 2012;5.

22. Kildea S, Stapleton H, Murphy R, Kosiak M, Gibbons K. The maternal and neonatal outcomes for an urban Indigenous population compared with their non-Indigenous counterparts and a trend analysis over four triennia. BMC Pregnancy and Childbirth. 2013;13(1):1.

23. Haider BA, Olofin I, Wang M, Spiegelman D, Ezzati M, Fawzi WW. Anaemia, prenatal iron use, and risk of adverse pregnancy outcomes: systematic review and meta-analysis. BMJ. 2013;346.

24. DeSisto CL, Kim SY, Sharma AJ. Peer Reviewed: Prevalence Estimates of Gestational Diabetes Mellitus in the United States, Pregnancy Risk Assessment Monitoring System (PRAMS), 2007–2010. Preventing chronic disease. 2014;11.

25. Charles DH, Ness AR, Campbell D, Smith GD, Whitley E, Hall MH. Folic acid supplements in pregnancy and birth outcome: Re!analysis of a large randomised controlled trial and update of Cochrane review. Paediatr Perinat Epidemiol. 2005;19(2):112-24.

26. Keenan-Lindsay L, Yudin M, Boucher M, Cohen H, Gruslin A, MacKinnon C, et al. HIV screening in pregnancy. J Obstet Gynaecol Can. 2006;28(12):1103-12.

27. Centers for Disease Control and Prevention. HIV Among Pregnant Women, Infants, and Children 2015 [cited 2016 Nov]. Available from: http://www.cdc.gov/hiv/group/gender/pregnantwomen/.

28. Griebel CP, Halvorsen J, Golemon TB, Day AA. Management of spontaneous abortion. Am Fam Physician. 2005;72(7):1243-50.

139

29. Toft G. Persistent organochlorine pollutants and human reproductive health. Danish Medical Journal. 2014;61(11):B4967-B.

30. Gülmezoglu AM, Crowther CA, Middleton P, Heatley E. Induction of labour for improving birth outcomes for women at or beyond term. The Cochrane Library. 2012.

31. National Institute for Health and Care Excellence (NICE). Inducing Labour: Clinical guideline. 2008.

32. Delaney M, Roggensack A, Leduc D, Ballermann C, Biringer A, Dontigny L, et al. Guidelines for the management of pregnancy at 41+ 0 to 42+ 0 weeks. J Obstet Gynaecol Can. 2008;30(9):800-23.

33. Lockwood CJ. ACOG Guidelines: Management of Late-Term and Postterm Pregnancies. 2014.

34. Wood S, Cooper S, Ross S. Does induction of labour increase the risk of caesarean section? A systematic review and meta!analysis of trials in women with intact membranes. BJOG. 2014;121(6):674-85.

35. Davies SM, Geppert J, McClellan M, McDonald KM, Romano PS, Shojania KG. Refinement of the HCUP quality indicators. Rockville, MD: 2001.

36. Bouvier!Colle MH, Mohangoo A, Gissler M, Novak!Antolic Z, Vutuc C, Szamotulska K, et al. What about the mothers? An analysis of maternal mortality and morbidity in perinatal health surveillance systems in Europe. BJOG. 2012;119(7):880-90.

37. Deneux-Tharaux C, Berg C, Bouvier-Colle M-H, Gissler M, Harper M, Nannini A, et al. Underreporting of pregnancy-related mortality in the United States and Europe. Obstet Gynecol. 2005;106(4):684-92.

38. Khan KS, Wojdyla D, Say L, Gülmezoglu AM, Van Look PF. WHO analysis of causes of maternal death: A systematic review. The Lancet. 2006;367(9516):1066-74.

39. Knight M, Callaghan WM, Berg C, Alexander S, Bouvier-Colle M-H, Ford JB, et al. Trends in postpartum hemorrhage in high resource countries: a review and recommendations from the International Postpartum Hemorrhage Collaborative Group. BMC Pregnancy and Childbirth. 2009;9(1):55.

40. Stafford I, Dildy GA, Clark SL, Belfort MA. Visually estimated and calculated blood loss in vaginal and cesarean delivery. Am J Obstet Gynecol. 2008;199(5):519. e1-. e7.

41. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (DSM). Washington, DC: American psychiatric association; 1994. 143-7 p.

42. Wisner KL, Parry BL, Piontek CM. Postpartum depression. NEJM. 2002;347(3):194-9.

43. Clarke PJ. Validation of two postpartum depression screening scales with a sample of First Nations and Metis women. Can J Nursing Research. 2008;40(1):112-25.

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44. Motzfeldt I, Andreasen S, Pedersen AL, Pedersen ML. Prevalence of postpartum depression in Nuuk, Greenland–a cross-sectional study using Edinburgh Postnatal Depression Scale. Int J Circumpolar Health. 2013;72.

45. Haley RW, Rulver DH, White JW, Morgan WM, Emori TG, Munn VP, et al. The efficacy of infection surveillance and control programs in preventing nosocomial infections in us hospitals. Am J Epidemiology. 1985;121(2):182-205.

46. Norum J, Heyd A, Hjelseth B, Svee T, Mürer FA, Erlandsen R, et al. Quality of obstetric care in the sparsely populated sub-arctic area of Norway 2009-2011. BMC Pregnancy and Childbirth. 2013;13.

47. Canadian Institute for Patient Safety. 2016 [cited 2016 Apr]. Available from: http://www.patientsafetyinstitute.ca/en/toolsResources/Pages/SSI-resources-Getting-Started- Kit.aspx.

48. Ashton CM, Wray NP. A conceptual framework for the study of early readmission as an indicator of quality of care. Social Science & Medicine. 1996;43(11):1533-41.

49. Meldgaard S. Reducing unwanted pregnancies in Greenland. Int J Circumpolar Health. 2004;63.

50. Statistics Greenland. Greenland in figures 2015. National Board of Health and Statistics Greenland, 2015.

51. Arbour L, Melnikov V, McIntosh S, Olsen B, Osborne G, Vaktskjold A. The current state of birth outcome and birth defect surveillance in northern regions of the world. Int J Circumpolar Health. 2009;68(5).

52. Canadian Institute for Health Information. Too Small: A Profile of Small Babies Across Canada. Ottawa: Canadian Institute for Health Information. 2009.

53. Public Health Agency of Canada. Perinatal Health Indicators for Canada 2013: a Report of the Canadian Perinatal Surveillance System. Ottawa, 2013.

54. Vanderlaan A HD. Evidence Brief: Risk factors associated with the development of large for gestational age (LGA) infants in Ontario. Toronto, ON: Ontario Agency for Health Protection and Promotion (Public Health Ontario), 2015.

55. American Academy of Pediatrics. The Apgar score. Advances in Neonatal Care. 2006;6(4):220-3.

56. Fallah S, Chen X, Lefebvre D, Kurji J, Hader J, Leeb K. Babies admitted to NICU/ICU: Province of birth and mode of delivery matter. Healthcare Quarterly. 2011;14(2):16-20.

57. Liu S, Wen SW, McMillan D, Trouton K. Increased neonatal readmission rate associated with decreased length of hospital stay at birth in Canada. Can J Public Health. 2000;91(1):46.

141

58. Baghurst PA. The case for retaining severe perineal tears as an indicator of the quality of obstetric care. Australian and New Zealand Journal of Obstetrics and Gynaecology. 2013;53(1):3-8.

59. Sultan AH, Kamm MA, Hudson CN, Thomas JM, Bartram CI. Anal-sphincter disruption during vaginal delivery. NEJM. 1993;329(26):1905-11.

60. Carroli G, Belizan J. Episiotomy for vaginal birth. The Cochrane Library. 1999.

61. Truong M, Paradies Y, Priest N. Interventions to improve cultural competency in healthcare: a systematic review of reviews. BMC Health Serv Res. 2014;14(1):99.

62. Australian Health Ministers' Advisory Council. Aboriginal and Torres Strait Islander Health Performance Framework 2014 Report. Canberra AHMAC; 2014.

63. Hodnett ED, Fredericks S, Weston J. Support during pregnancy for women at increased risk of low birthweight babies. The Cochrane Library. 2010;6(6).

64. Anim-Somuah M, Smyth R, Howell C. Epidural versus non-epidural or no analgesia in labour. The Cochrane Library. 2005;4.

65. Canadian Institute for Health Information (CIHI). Canadian Insititute for Health Information: Indicator Library 2015 [cited 2015 Nov]. Available from: http://indicatorlibrary.cihi.ca/display/HSPIL/Indicator+Library?desktop=true.

66. Gill L, White L. A critical review of patient satisfaction. Leadership in Health Services. 2009;22(1):8-19.

67. Rowe R, Magee H, Quigley M, Heron P, Askham J, Brocklehurst P. Social and ethnic differences in attendance for antenatal care in England. Public health. 2008;122(12):1363-72.

68. Alfirevic Z, Devane D, Gyte G. Continuous cardiotocography (CTG) as a form of electronic fetal monitoring (EFM) for fetal assessment during labour. The Cochrane Library. 2006;3(3).

69. Brocklehurst P, Hardy P, Hollowell J, Linsell L, Macfarlane A, McCourt C, et al. Perinatal and maternal outcomes by planned place of birth for healthy women with low risk pregnancies: the Birthplace in England national prospective cohort study. BMJ. 2011;343(7840).

70. Hatem M, Sandall J, Devane D, Soltani H, Gates S. Midwife!led versus other models of care for childbearing women. The Cochrane Library. 2008.

71. Viisainen K, Gissler M, Hartikainen AL, Hemminki E. Accidental out!of!hospital births in Finland, incidence and geographical distribution 1963!1995. Acta Obstet Gynecol Scand. 1999;78(5):372-8.

72. Kornelsen J, Kotaska A, Waterfall P, Willie L, Wilson D. The geography of belonging: the experience of birthing at home for First Nations women. Health & Place. 2010;16(4):638-45.

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73. Chamberlain M, Barclay K. Psychosocial costs of transferring indigenous women from their community for birth. Midwifery. 2000;16(2):116-22.

74. O'Driscoll T, Kelly L, Payne L, St Pierre-Hansen N, Cromarty H, Minty B, et al. Delivering away from home: the perinatal experiences of First Nations women in northwestern Ontario. Can J Rural Medicine. 2011;16(4):126-30.

75. Liu S, Heaman M, Kramer MS, Demissie K, Wen SW, Marcoux S, et al. Length of hospital stay, obstetric conditions at childbirth, and maternal readmission: a population-based cohort study. Am J Obstet Gynecol. 2002;187(3):681-7. *

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Appendix$5$–$Round$2$questionnaire$

Circumpolar!MCH!Indicators!(ROUND!2)$

Thank you so much for participating in ROUND 1 of this process! A note about the indicators in ROUND 2: The group is close to reaching a consensus. Below you will find the same indicators you evaluated in ROUND 1. You will also find the mean and median group responses from ROUND 1. Some new items suggested by the panel have also been added. As these represent concepts suggested by the panel, they are not accompanied by definitions from the literature. A note about definitions: Based on your feedback, definitions of some indicators have been clarified or added to the alternative definitions provided in the attached info sheet. We realize that there are many different ways to define each indicator and that there are many possible ways to capture related phenomena. All of the definitions identified in the scoping review are included in the attached info sheet. The primary definition is that which was used most frequently in this body of international literature. For ROUND2, please rate the indicators according to the same four criteria. You may use the ROUND 1 group responses to adjust your own responses.

Criteria definitions:

Importance: Level of concern of healthcare users or policy makers and the degree to which the indicator is susceptible to being influenced by the healthcare system Circumpolar Relevance: Significance in the circumpolar context Validity: Degree to which the indicator measures what it intends to measure Reliability: Degree to which the indicator provides stable results across various populations, circumstances, and time points

Please select your level of agreement with each statement according to the following scale. 1 - Strongly disagree 2 – Disagree 3 - Somewhat disagree 4 – Neutral 5 - Somewhat agree 6 – Agree 7 - Strongly Agree

If you do not know, or you prefer not to answer, please select N/A.

Consent to participate in a research study

Study Title: Performance Measurement in a Circumpolar Context: Developing indicators for maternity care

Research Team: Dr. Rebecca Rich Resident physician, Department of Obstetrics and Gynecology, University of Toronto M.Sc. Candidate, Institute of Health Policy Management and Evaluation, University of Toronto 120 Homewood Ave #116, Toronto, Ontario M4Y2J3 Canada Tel: (416) 859-7424 (cell) [email protected]

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Dr. Kellie Murphy Associate Professor, Department of Obstetrics and Gynecology, University of Toronto Associate Professor, Institute of Health Policy, Management and Evaluation, University of Toronto Staff Physician, Mount Sinai Hospital 700 University Avenue, Room 3-918 Toronto, ON, M5G 1Z5 Canada Tel: (416) 586-8570 Fax: (416) 586-4792 [email protected]

Ms. Susan Chatwood Assistant Professor, Dalla Lana School of Public Health, University of Toronto Executive and scientific director, Institute for Circumpolar Health Research PO Box 11050, Yellowknife, NT, X1A 3X7 Tel: (867) 873-9337 Fax: (867) 873-9338 [email protected]

Dr. Jeremy Veillard, Assistant Professor, Institute of Health Policy Management and Evaluation, University of Toronto Strategic Policy Adviser, Health, Nutrition and Population Global Practice, The World Bank Group 1776 G Street NW Office 7-097 Washington, DC 20006 USA Tel: (202) 790 2005 (cell) [email protected]

You are being invited to participate in this research study because your peers have identified you as an expert in Northern maternity care, Northern health systems, or the development and evaluation of health systems performance indicators.

About the Study: Assessment of performance in healthcare is a necessary component of a responsible health system. At present, maternity care systems in the circumpolar world are based on a model that treats health system responsiveness (the ability of the health system to meet the needs and expectations of the population it serves in accordance with the values of that population) and health outcomes as competing interests. However, in the context of low risk maternity care this conflict is not founded in evidence. A performance measurement strategy that recognizes a responsive health system as both a means to an end and an end in itself is a necessary step toward resolving this conflict. This project will use a modified Delphi consensus process to generate a set of contextually appropriate performance indicators for maternity care in circumpolar regions. The findings will help to inform the ongoing development of information systems in Northern Canada and contribute to the provision of safe, responsive, and culturally appropriate maternity care for Indigenous women.

Your participation: Participation will include completion of a series of online surveys (two to three in total) over a period of 1-3 months. Each survey will take approximately 30-45 minutes to complete and will ask you to evaluate each indicator’s importance, relevance, validity, and reliability. Your participation is in this study is voluntary. You are may refuse to participate or withdraw your participation at any time without consequences. If you do not want to continue, you can simply leave the survey website prior to submitting your answers. You may also choose to skip any questions that you do not wish to or feel able to answer without consequences. Please note that the research study you are participating in may be reviewed for quality assurance to make sure that the required laws and guidelines are followed. If chosen, a representative of the Human Research Ethics Program (HREP) may access study-related data and/or

145 consent materials as part of the review. All information accessed by the HREP will be upheld to the same level of confidentiality that has been stated by the research team.

Access to information, confidentiality, and publication of results: Participation in the survey portion of the study will be anonymous and no information will be used to track individual participants’ survey answers. Thus, once you have submitted your survey responses, the data cannot be withdrawn. Anonymous survey responses will be collected through FluidSurvey servers and managed in accordance with their privacy and security policies. Of note, e-mail addresses of participants are safeguarded and not shared with outside sources. Following the data collection period, survey response data will be extracted and stored electronically on an encrypted laptop computer. Your contact information (email address), and data collected at the consensus meeting content will be stored in a similar fashion and will be accessible only to the research team. Data will be stored for five years after which time it will be deleted. Quotations from your responses to survey questions may be used for academic presentation or publication. You will also receive final project report at its conclusion.

Risks and benefits: By participating in this study you will be contributing to a performance measurement strategy that reflects the values and context unique to maternity care in Northern regions. There are no risks to you for participating in this study. No consequences will occur if you choose not to participate.

Contact Information: Should you have further questions you may contact any of the researchers (contact information above). If you have questions about your rights as a participant in research, please contact the Research Oversight and Compliance Office - Human Research Ethics Program at [email protected] or 416-946- 3273

By beginning the survey, you acknowledge that you have read this information, have had your questions answered, and freely agree to participate in this study. You may print or retain a copy of this form for your records.

DETERMINANTS&OF&HEALTH&

The$following$indicators$represent$non3healthcare$factors$that$determine$health.$These$can$be$ health$behaviours,$personal$resources,$socioeconomic,$environmental,$or$physical$factors.$$

Teenage&birth&rate& Number$of$births$per$1000$women$ages$15319$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.07,$median=6,$SD=1.21)$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.36,$ $ $ $ $ $ $ $ $ median=7,$SD=1.08)$

This$indicator$is$valid.$[mean=6.28,$median=7,$SD=1.07)$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.54,$median=7,$SD=0.66)$ $ $ $ $ $ $ $ $

&

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Advanced&maternal&age& Proportion$of$live$births$to$women$35$or$older$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=4.86,$median=5,$SD=1.46)$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=4.35,$ $ $ $ $ $ $ $ $ median=4,$SD=1.45)$

This$indicator$is$valid.[mean=6.00,$median=6,$SD=1.08)$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.15,$median=6,$SD=0.90)$ $ $ $ $ $ $ $ $

&

Maternal&Body&Mass&Index&(BMI)& Distribution$of$mother’s$pre3pregnancy$body$mass$index$(BMI)$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.71,$median=6,$SD=1.38)$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6.5,$SD=1.64)$

This$indicator$is$valid.$[mean=5.30,$median=5,$SD=1.75)$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.85,$median=5,$SD=1.82)$ $ $ $ $ $ $ $ $

&

Maternal&education&level& Proportion$of$pregnancies$to$mothers$with$education$level$less$than$grade$12$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.31,$median=7,$SD=1.03)$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.43,$ $ $ $ $ $ $ $ $ median=7,$SD=0.76)$

This$indicator$is$valid.$[mean=6.15,$median=6,$SD=0.69)$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.64,$median=6,$SD=1.22)$ $ $ $ $ $ $ $ $

&

&

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Domestic&violence&& Proportion$of$pregnant$women$reporting$physical$or$sexual$abuse$in$the$past$two$years$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.53,$median=7,$SD=0.97]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.64,$ $ $ $ $ $ $ $ $ median=7,$SD=0.63]$

This$indicator$is$valid.$[mean=5.58,$median=5.5,$SD=1.16]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.14,$median=4,$SD=1.66]$ $ $ $ $ $ $ $ $

&

Smoking&during&pregnancy& Proportion$of$women$who$smoked$during$pregnancy$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.92,$median=7,$SD=0.23]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.92,$ $ $ $ $ $ $ $ $ median=7,$SD=0.27]$

This$indicator$is$valid.$[mean=5.93,$median6=,$SD=1.27]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.43,$median=6,$SD=1.87]$ $ $ $ $ $ $ $ $

&

Use&of&illicit&drugs&during&pregnancy& Proportion$of$women$who$report$using$illicit$substances$during$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.86,$median=7,$SD=0.36]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.57,$ $ $ $ $ $ $ $ $ median=7,$SD=0.65]$

This$indicator$is$valid.$[mean=5.23,$median=5,$SD=1.30]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.07,$median4=,$SD=1.64]$ $ $ $ $ $ $ $ $

&

&

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Use&of&alcohol&during&pregnancy& Proportion$of$mothers$reporting$alcohol$use$in$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.71,$median=7,$SD=0.61]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.64,$ $ $ $ $ $ $ $ $ median=7,$SD=0.74]$

This$indicator$is$valid.$[mean=5.61,$median=5,$SD=1.33]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.15,$median=4,$SD=1.63]$ $ $ $ $ $ $ $ $

&

Exposure&to&environmental&contaminants& Persistent$organic$pollutant$(POP)$concentration$in$breast$milk$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.67,$median=6,$SD=1.43]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.77,$ $ $ $ $ $ $ $ $ median=6,$SD=1.30]$

This$indicator$is$valid.$[mean=5.08,$median=6,$SD=1.78]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.50,$median=6,$SD=1.98]$ $ $ $ $ $ $ $ $

&

Stressors&during&pregnancy& Proportion$of$women$who$reported$experiencing$two$or$more$stressors$during$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.30,$median=6,$SD=1.60]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6,$SD=1.33]$

This$indicator$is$valid.$[mean=4.15,$median=4,$SD=1.86]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=3.85,$median=3,$SD=1.91]$ $ $ $ $ $ $ $ $

&

&

149

Breastfeeding&practices& Proportion$of$newborns$that$were$exclusively$breastfed$through$the$first$48$hours$of$life$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.54,$median=7,$SD=0.66]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.77,$ $ $ $ $ $ $ $ $ median=7,$SD=0.44]$

This$indicator$is$valid.$[mean=6.31,$median=6,$SD=0.75]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.77,$median=6,$SD=1.24]$ $ $ $ $ $ $ $ $

&

Involvement&of&child&and&family&services&or&similar&organization& Proportion$of$births$to$women$who$have$had$contact$with$the$Department$of$Child$safety$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.69,$median=6,$SD=1.03]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.08,$ $ $ $ $ $ $ $ $ median=6,$SD=0.67]$

This$indicator$is$valid.$[mean=5.00,$median=5,$SD=1.41]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.75,$median=5,$SD=1.60]$ $ $ $ $ $ $ $ $

Maternal&history&of&adverse&childhood&experiences&& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Family&income&or&income&distribution& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Food&insecurity& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

150

Level&of&maternal&physical&activity& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Maternal&oral&health& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Maternal&smokeless&tobacco&use& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Maternal&housing&(experiences&of&overcrowding&or&being&inadequately&or&under`housed)& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

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EFFECTIVENESS&

The$following$indicators$represent$indicators$of$health$system$effectiveness.$Effectiveness$refers$to$ the$degree$of$achieving$desirable$outcomes,$given$the$correct$provision$of$evidence3based$ healthcare$services$to$all$who$could$benefit,$not$to$those$who$would$not$benefit$(Arah$et$al.$2003).$$

&

Anemia&& Proportion$of$women$diagnosed$with$anemia$during$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.57,$median=7,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=,6.71$ $ $ $ $ $ $ $ $ median=7,$SD=0.47]$

This$indicator$is$valid.$[mean=6.18,$median=6,$SD=0.98]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.08,$median=6,$SD=1.23]$ $ $ $ $ $ $ $ $

&

Eclampsia& Rate$of$eclampsia$(per$1000$births)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.79,$median=6.5,$SD=1.76]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.86,$ $ $ $ $ $ $ $ $ median=6.5,$SD=1.66]$

This$indicator$is$valid.$[mean=5.92,$median=6,$SD=1.38]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.50,$median=6,$SD=1.31]$ $ $ $ $ $ $ $ $

Diabetes&in&pregnancy& Proportion$of$women$diagnosed$with$gestational$diabetes$(per$1000$births)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.57,$median=7,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.35,$ $ $ $ $ $ $ $ $ median=6.5,$SD=0.74]$

This$indicator$is$valid.$[mean=5.85,$median=6,$SD=1.46]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.62,$median=6,$SD=1.45]$ $ $ $ $ $ $ $ $

152

Folic&acid&supplementation& Proportion$of$women$who$reported$taking$folic$acid$supplementation$preconception$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.14,$median=6,$SD=0.84]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.14,$ $ $ $ $ $ $ $ $ median=6,$SD=0.86]$

This$indicator$is$valid.$[mean=5.33,$median=5.5,$SD=1.23]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.2,$median=4,$SD=1.59]$ $ $ $ $ $ $ $ $

&

HIV&testing& Proportion$of$women$who$reported$having$HIV$testing$in$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.36,$median=5.5,$SD=1.39]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.00,$ $ $ $ $ $ $ $ $ median=5,$SD=1.58]$

This$indicator$is$valid.$[mean=6.09,$median=6,$SD=0.94]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.91,$median=6,$SD=1.14]$ $ $ $ $ $ $ $ $

Spontaneous&abortions& Proportion$of$all$pregnancies$which$end$in$spontaneous$abortion$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.42,$median=5.5,$SD=1.16]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.31,$ $ $ $ $ $ $ $ $ median=6,$SD=1.25]$

This$indicator$is$valid.$[mean=4.83,$median=5,$SD=1.40]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.41,$median=5,$SD=1.56]$ $ $ $ $ $ $ $ $

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153

Stillbirths& Fetal$deaths$(after$28$weeks$GA,$or$greater$than$or$equal$to$1000g$where$GA$is$not$available)$per$ 1000$births$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.21,$median=6.5,$SD=1.12]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.07,$ $ $ $ $ $ $ $ $ median=6,$SD=1.07]$

This$indicator$is$valid.$[mean=6.08,$median=7,$SD=1.44]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.00,$median=6,$SD=1.41]$ $ $ $ $ $ $ $ $

&

Perinatal&death&& Perinatal$deaths$(stillbirths$after$28$weeks$plus$neonatal$deaths$within$the$first$7$days$of$life)$per$ 1000$births$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.64,$median=7,$SD=0.63]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.50,$ $ $ $ $ $ $ $ $ median=7,$SD=0.65]$

This$indicator$is$valid.$[mean=6.46,$median=7,$SD=.066]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.38,$median=6,$SD=0.42]$ $ $ $ $ $ $ $ $

&

Preterm&births& Proportion$of$all$births$at$less$than$37$weeks$GA$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.79,$median=7,$SD=0.43]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.79,$ $ $ $ $ $ $ $ $ median=7,$SD=0.43]$

This$indicator$is$valid.$[mean=6.30,$median=7,$SD=]1.11$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.23,$median=6,$SD=1.09]$ $ $ $ $ $ $ $ $

&

154

Post&term&births& Proportion$of$all$births$at$greater$than$42$weeks$GA$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.28,$median=6,$SD=1.64]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.07,$ $ $ $ $ $ $ $ $ median=5,$SD=1.21]$

This$indicator$is$valid.$[mean=5.61,$median=6,$SD=0.87]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.53,$median=6,$SD=1.13]$ $ $ $ $ $ $ $ $

&

Induction&and&augmentation&of&labour& Mode$of$onset$of$labour$(spontaneous$vs.$induced$labour)$per$100$live$births$and$stillbirths$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.64,$median=6,$SD=1.22]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.29,$ $ $ $ $ $ $ $ $ median=5,$SD=1.27]$

This$indicator$is$valid.$[mean=5.85,$median=6,$SD=1.24]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.75,$median=6,$SD=1.14]$ $ $ $ $ $ $ $ $

&

VBAC&(after&single&previous&C/S)& Proportion$of$multiparous$mothers$who$have$had$one$previous$caesarean,$whose$current$method$ of$birth$was$either$an$instrumental$or$non3instrumental$vaginal$delivery$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.57,$median=6,$SD=1.34]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.21,$ $ $ $ $ $ $ $ $ median=6,$SD=1.53]$

This$indicator$is$valid.$[mean=6.08,$median=6,$SD=1.04]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.08,$median=6,$SD=1.04]$ $ $ $ $ $ $ $ $

&

155

Instrumental&vaginal&deliveries& Percentage$of$all$births$by$instrumental$vaginal$delivery$(vacuum/forceps)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.62,$median=6,$SD=1.39]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.23,$ $ $ $ $ $ $ $ $ median=6,$SD=1.36]$

This$indicator$is$valid.$[mean=6.17,$median=6,$SD=1.11]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.92,$median=6,$SD=1.44]$ $ $ $ $ $ $ $ $

&

Caesarean§ions& Percentage$of$all$births$(live$and$stillbirths)$by$caesarean$section$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$ $

This$indicator$is$important.$[mean=6.43,$median=6.5,$ $ $ $ $ $ $ $ $ $ SD=0.65]$

This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $ $ [mean=6.07,$median=6,$SD=1.07]$

This$indicator$is$valid.$[mean=6.38,$median=7,$SD=0.87]$ $ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean6.53=,$median=7,$SD=0.52]$ $ $ $ $ $ $ $ $ $

&

Maternal&mortality& Maternal$mortality$ratio$(MMR):$The$number$of$maternal$deaths$during$a$given$time$period$per$ 100,000$live$births$during$the$same$time3period$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.57,$median7=,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.5,$ $ $ $ $ $ $ $ $ median=7,$SD=0.76]$

This$indicator$is$valid.$[mean=6.62,$median=7,$SD=0.51]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.62,$median=7,$SD=0.51]$ $ $ $ $ $ $ $ $

&

156

Postpartum&hemorrhage& Proportion$of$women$who$had$an$estimated$blood$loss$of$>1000$mL$at$delivery$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.46,$median=7,$SD=0.66]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.23,$ $ $ $ $ $ $ $ $ median=6,$SD=0.83]$

This$indicator$is$valid.$[mean=5.83,$median=6,$SD=1.47]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.25,$median=5.5,$SD=1.54]$ $ $ $ $ $ $ $ $

&

Postpartum&depression& Proportion$of$women$who$scored$>$14$on$the$Edinburgh$Depression$scale$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.4,$median=7,$SD=0.79]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.33,$ $ $ $ $ $ $ $ $ median=6.5,$SD=0.78]$

This$indicator$is$valid.$[mean=4.67,$median=5,$SD=2.02]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=3.91,$median=3,$SD=2.12]$ $ $ $ $ $ $ $ $

& Postpartum&infections&&

Proportion$of$women$who$suffered$a$surgical$site$infection$within$30$days$of$caesarean$section$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.92,$median=6,$SD=0.95]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.61,$ $ $ $ $ $ $ $ $ median=6,$SD=1.12]$

This$indicator$is$valid.$[mean=5.5,$median=6,$SD=1.24]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.00,$median=6,$SD=1.60]$ $ $ $ $ $ $ $ $

&

&

157

Maternal&readmissions&to&hospital& Risk$adjusted$rate$of$readmission$to$hospital$after$an$admission$for$obstetric$indications$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.71,$median=6,$SD=1.14]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.57,$ $ $ $ $ $ $ $ $ median=6,$SD=1.22]$

This$indicator$is$valid.$[mean=5.61,$median=6,$SD=1.26]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.54,$median=6,$SD=1.33]$ $ $ $ $ $ $ $ $

&

Postpartum&contraception& Proportion$of$women$using$birth$control$postpartum$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.35,$median=7,$SD=0.93]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.28,$ $ $ $ $ $ $ $ $ median=7,$SD=1.07]$

This$indicator$is$valid.$[mean=5.58,$median=6,$SD=1.08]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.67,$median=4.5,$SD=1.56]$ $ $ $ $ $ $ $ $

& Neonatal&mortality&&

Neonatal$death$(from$birth$to$28$days$of$life)$per$1000$live$births$occurring$at$or$after$24$weeks$GA$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.86,$median7=,$SD=0.36]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.86,$ $ $ $ $ $ $ $ $ median=7,$SD=0.36]$

This$indicator$is$valid.$[mean=6.61,$median=7,$SD=0.51]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.54,$median=7,$SD=0.52]$ $ $ $ $ $ $ $ $

&

&

158

Congenital&anomalies& Prevalence$of$major$congenital$anomalies$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.14,$median=6.5,$SD=1.17]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.14,$ $ $ $ $ $ $ $ $ median=6.5,$SD=1.17]$

This$indicator$is$valid.$[mean=6.00,$median=6,$SD=1.29]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.54,$median=6,$SD=1.66]$ $ $ $ $ $ $ $ $

&

Small&for&gestational&age&Infants& Proportion$of$live$born$singleton$newborns$weighing$<10th$%ile$for$GA$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.5,$median=7,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.35,$ $ $ $ $ $ $ $ $ median=7,$SD=1.34]$

This$indicator$is$valid.$[mean=6.38,$median=6,$SD=0.51]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.92,$median=6,$SD=1.19]$ $ $ $ $ $ $ $ $

&

Low&birth&weight&infants&& Proportion$of$live$born$infants$weighing$<2500g$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.43,$median=6.5,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.21,$ $ $ $ $ $ $ $ $ median=6.5,$SD=1.31]$

This$indicator$is$valid.$[mean=6.54,$median=7,$SD=0.52]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.54,$median=7,$SD=0.52]$ $ $ $ $ $ $ $ $

&

&

159

Large&for&gestational&age&infants&& Proportion$of$live$born$singleton$newborns$•$Proportion$of$live$born$singleton$newborns$weighing$ >90th$%ile$for$GA$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.00,$median=6,$SD=0.97]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6,$SD=0.91]$

This$indicator$is$valid.$[mean=5.92,$median=6,$SD=0.76]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.69,$median=6,$SD=1.37]$ $ $ $ $ $ $ $ $

&

Five&minute&Apgar&score&& Proportion$of$newborns$with$5$minute$Apgar$score$<$7$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.71,$median=6,$SD=1.44]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6,$SD=1.33]$

This$indicator$is$valid.$[mean=5.46,$median=6,$SD=1.45]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.15,$median=5,$SD=1.72]$ $ $ $ $ $ $ $ $

&

NICU&admissions& Proportion$of$newborns$requiring$admission$to$a$neonatal$intensive$care$unit$(NICU)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.08,$median6=,$SD=1.12]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6,$SD=1.44]$

This$indicator$is$valid.$[mean=6.23,$median=6,$SD=1.09]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.62,$median=6,$SD=1.56]$ $ $ $ $ $ $ $ $

&

160

Neonatal&readmission&to&hospital& Rate$of$neonatal$hospital$readmission$after$discharge$following$birth$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.86,$median=6,$SD=1.10]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.86,$ $ $ $ $ $ $ $ $ median=6,$SD=1.10]$

This$indicator$is$valid.$[mean=6.08,$median=6,$SD=1.04]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.92,$median=6,$SD=1.32]$ $ $ $ $ $ $ $ $

Vitamin&D&supplementation& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Prenatal&vitamin&use& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Screening&for&gestational&diabetes&(GDM)& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

Rate&of&unintended&pregnancies& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

&

161

SAFETY&

The$following$indicators$represent$safety.$Safety$refers$to$the$degree$to$which$healthcare$avoids$ and$prevents$adverse$outcomes$that$are$a$result$of$the$healthcare$itself$(National$Patient$Safety$ Foundation,$2000).$$

&

Births&without&obstetric&intervention& Proportion$of$births$occurring$without$obstetric$intervention$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.33,$median=6.5,$SD=0.89]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.12,$ $ $ $ $ $ $ $ $ median=6,$SD=0.94]$

This$indicator$is$valid.$[mean=5.9,$median=6,$SD=0.99]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.27,$median=6,$SD=1.62]$ $ $ $ $ $ $ $ $

&

Perineal&trauma&& Proportion$of$women$delivering$vaginally$who$had$a$3rd$or$4th$degree$tear$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.58,$median=6,$SD=1.16]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.5,$ $ $ $ $ $ $ $ $ median=6,$SD=1.09]$

This$indicator$is$valid.$[mean=6.09,$median=6,$SD=0.54]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.91,$median=6,$SD=.70]$ $ $ $ $ $ $ $ $

&

Transfers&for&obstetrical&indications&(antepartum,&intrapartum,&postpartum)& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

&

162

Unplanned&births&in&the&community&(by&term/preterm&status)& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

$

RESPONSIVENESS& The$following$indicators$refer$to$health$system$responsiveness.$Responsiveness$refers$to$the$ability$ of$the$health$system$to$"meet$the$population's$legitimate$expecations$regarding$their$interaction$ with$the$health$system,$apart$from$expectations$for$improvements$in$health$or$wealth"$(WHO$ 2000).$$

&

Characteristics&of&care&providers& Proportion$of$Aboriginal$people$in$the$health$workforce$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.21,$median=7,$SD=1.42]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.5,$ $ $ $ $ $ $ $ $ median=7,$SD=1.09]$

This$indicator$is$valid.$[mean=5.77,$median=6,$SD=1.36]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.3,$median=6,$SD=1.37]$ $ $ $ $ $ $ $ $

Cultural&competency& Proportion$of$health$care$services$with$cultural$safety$policies$or$processes$in$place$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.31,$median=7,$SD=1.44]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.46,$ $ $ $ $ $ $ $ $ median=7,$SD=1.20]$

This$indicator$is$valid.$[mean=5.08,$median=6,$SD=2.06]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.00,$median=5,$SD=1.96]$ $ $ $ $ $ $ $ $

163

Patient&reported&unfair&treatment&based&onðnicity& Proportion$of$patients$who$self3reported$an$experience$of$unfair$treatment$by$a$health$professional$ on$the$basis$of$ethnicity$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.31,$median=7,$SD=1.38]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.07,$ $ $ $ $ $ $ $ $ median=7,$SD=1.64]$

This$indicator$is$valid.$[mean=5.58,$median=6,$SD=1.73]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.75,$median=5.5,$SD=2.05]$ $ $ $ $ $ $ $ $

&

Patient&reported&support&during&labour&and&birth& Patient$reported$support$during$labour$and$birth$(husband/partner$vs.$other$support$person)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.38,$median=7,$SD=0.96]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.29,$ $ $ $ $ $ $ $ $ median=7,$SD=1.07]$

This$indicator$is$valid.$[mean=5.83,$median=6,$SD=1.34]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.67,$median=6,$SD=1.44]$ $ $ $ $ $ $ $ $

&

Use&of&analgesia&in&labour& Epidural$rate$for$vaginal$deliveries$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=4.81,$median=5,$SD=1.66]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=4.83,$ $ $ $ $ $ $ $ $ median=5,$SD=1.27]$

This$indicator$is$valid.$[mean=5.36,$median=6,$SD=1.29]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.64,$median=6,$SD=1.03]$ $ $ $ $ $ $ $ $

&

&

164

Mother`infant&contact&at&birth& Proportion$of$women$who$reported$that$they$were$able$to$hold$their$baby$within$five$minutes$of$ birth$(excluding$infants$admitted$to$the$NICU)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.00,$median=7,$SD=1.41]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.71,$ $ $ $ $ $ $ $ $ median=6.50,$SD=1.64]$

This$indicator$is$valid.$[mean=5.55,$median=6,$SD=1.81]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.64,$median=6,$SD=1.29]$ $ $ $ $ $ $ $ $

Presence&of&breastfeeding&support&programs& Proportion$of$babies$born$in$hospitals$that$have$received$the$“baby$friendly$hospital$initiative”$or$ similar$designation$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.14,$median=6,$SD=0.86]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.07,$ $ $ $ $ $ $ $ $ median=6,$SD=1.07]$

This$indicator$is$valid.$[mean=5.17,$median=5.5,$SD=1.64]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.08,$median=5,$SD=1.62]$ $ $ $ $ $ $ $ $

Patient&reported&satisfaction&with&care& Proportion$of$women$who$reported$being$satisfied$with$their$birth$experience$and$care$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.62,$median=7,$SD=0.51]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.62,$ $ $ $ $ $ $ $ $ median=7,$SD=0.51]$

This$indicator$is$valid.$[mean=6.00,$median=7,$SD=1.34]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.63,$median=6,$SD=1.57]$ $ $ $ $ $ $ $ $

Gestational&age&at&which&patients&are&transferred&for&birth& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

165

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

$

&

ACCESSIBILITY& The$following$indicators$refer$to$healthcare$accessibility.$Accessibility*refers$to$the$ease$with$which$ health$services$can$be$reached.$$

&

Frequency&and&timing&of&antenatal&care& Proportion$of$all$pregnant$women$(with$live$or$stillborn$infants)$who$received$antenatal$care$in$the$ first$trimester$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.36,$median=7,$SD=1.08]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.36,$ $ $ $ $ $ $ $ $ median=7,$SD=1.08]$

This$indicator$is$valid.$[mean=6.25,$median=6.5,$SD=0.97]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.33,$median=6.5,$SD=0.89]$ $ $ $ $ $ $ $ $

&

Prenatal&care&provider& Patient$reported$provider$for$prenatal$care$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.55,$median=7,$SD=0.69]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.50,$ $ $ $ $ $ $ $ $ median=7,$SD=0.67]$

This$indicator$is$valid.$[mean=6.10,$median=6,$SD=0.99]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.9,$median=6.0,$SD=1.20]$ $ $ $ $ $ $ $ $

&

166

Use&of&antenatal&ultrasound& Proportion$of$women$who$report$having$had$at$least$one$ultrasound$in$pregnancy$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.08,$median=6,$SD=1.04]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.77,$ $ $ $ $ $ $ $ $ median=6,$SD=1.54]$

This$indicator$is$valid.$[mean=6.36,$median=6,$SD=0.67]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.36,$median=6,$SD=0.67]$ $ $ $ $ $ $ $ $

&

Induced&abortions&& Induced$abortion$ratio$(CDC$definition):$Number$of$induced$abortions$per$1000$live$births$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.54,$median=7,$SD=0.52]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.46,$ $ $ $ $ $ $ $ $ median=6,$SD=0.52]$

This$indicator$is$valid.$[mean=6.42,$median=6,$SD=0.51]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.92,$median=6,$SD=1.08]$ $ $ $ $ $ $ $ $

&

Birth&attendant&& Proportion$of$women$giving$birth$with$a$skilled$birth$attendant$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.43,$median=7,$SD=0.93]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.86,$ $ $ $ $ $ $ $ $ median=6,$SD=1.23]$

This$indicator$is$valid.$[mean=6.17,$median=6,$SD=0.94]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.17,$median=6,$SD=0.94]$ $ $ $ $ $ $ $ $

&

&

167

FHR&monitoring&during&labour& Patient$reported$use$of$electronic$fetal$monitoring$(continuous$vs.$intermittent$vs.$none)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.23,$median=5,$SD=0.93]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.31,$ $ $ $ $ $ $ $ $ median=5,$SD=0.95]$

This$indicator$is$valid.$[mean=5.70,$median=6,$SD=0.67]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.70,$median=6,$SD=1.16]$ $ $ $ $ $ $ $ $

&

Place&or&setting&for&birth&& Distribution$of$births$by$location$and$size$of$maternity$unit$(home$vs.$maternity$unit$stratified$by$ number$of$births/year)$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.08,$median=6,$SD=1.38]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.23,$ $ $ $ $ $ $ $ $ median=7,$SD=1.17]$

This$indicator$is$valid.$[mean=6.08,$median=6,$SD=.090]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.92,$median=6,$SD=1.00]$ $ $ $ $ $ $ $ $

&

Travel&to&place&of&birth& Proportion$of$women$that$report$having$to$travel$>100km$to$place$of$birth$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.71,$median=7,$SD=0.47]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.87,$ $ $ $ $ $ $ $ $ median=7,$SD=0.38]$

This$indicator$is$valid.$[mean=6.33,$median=6,$SD=0.65]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.25,$median=6,$SD=0.87]$ $ $ $ $ $ $ $ $

&

168

Postpartum&visit(s)& Proportion$of$women$that$report$having$attended$a$postpartum$follow$up$visit$$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=6.36,$median=6,$SD=0.63]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=6.08,$ $ $ $ $ $ $ $ $ median=6,$SD=1.38]$

This$indicator$is$valid.$[mean=5.91,$median=6,$SD=1.30]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=6.09,$median=6,$SD=0.94]$ $ $ $ $ $ $ $ $

&

Availability&of&a&maternity&care&provider&in&patient's&community& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

&

Availability&of&a&maternity&care&provider&that&speaks&the&same&language&and/or&is&from&the& same&culture&as&the&patient& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

&

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

&

&

&

169

COST&

The$following$indicators$refer$to$healthcare$cost/expenditure.$Many$important$ideas$were$raised$ regarding$the$cost$of$maternity$care$in$circumpolar$regions.$Some$of$these$ideas$were$incorporated$ into$a$single$example$indicator$(below).$Other$possible$cost$indicators$could$be$developed$from$the$ ideas$you$raised$and$should$perhaps$be$the$subject$of$future$work.$$

Cost&of&maternity&care&per&patient&

Unit$cost$of$maternity$(adjusted$for$case$mix$and$market$forces)$& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.57,$median=6,$SD=1.34]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.85,$ $ $ $ $ $ $ $ $ median=6,$SD=1.28]$

This$indicator$is$valid.$[mean=4.92,$median=6,$SD=1.85]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=4.62,$median=5,$SD=1.89]$ $ $ $ $ $ $ $ $

Maternal&Length&of&stay& Proportion$of$women$staying$<$3$days$in$hospital$after$childbirth$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.71,$median=6,$SD=0.91]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.53,$ $ $ $ $ $ $ $ $ median=6,$SD=1.20]$

This$indicator$is$valid.$[mean=5.62,$median=6,$SD=1.39]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.62,$median=6,$SD=1.39]$ $ $ $ $ $ $ $ $

Neonatal&length&of&stay& Proportion$of$neonates$being$discharged$from$hospital$within$48$hours$of$birth$ $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$[mean=5.57,$median=6,$SD=0.94]$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$[mean=5.46,$ $ $ $ $ $ $ $ $ median=6,$SD=1.20]$

This$indicator$is$valid.$[mean=5.31,$median=6,$SD=1.38]$ $ $ $ $ $ $ $ $ This$indicator$is$reliable.$[mean=5.46,$median=6,$SD=1.45]$ $ $ $ $ $ $ $ $

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170

Total&cost&to&obtain&standard&of&care&for&(example&condition)&including&cost&of&medical& evacuation&as&well&as&direct&and&indirect&costs&incurred&by&the&patient/family& $ 1$ 2$ 3$ 4$ 5$ 6$ 7$ N/A$

This$indicator$is$important.$ $ $ $ $ $ $ $ $ This$indicator$is$relevant$to$the$circumpolar$context.$ $ $ $ $ $ $ $ $

If&you&have&any&additional&comments,&please&include&them&here.&&

$ $

171

Appendix(6(–(Mean(indicator(scores((Round(2)( Selected Indicators – 80% of participants responded “agree” or “strongly agree” for all four criteria Indicators for consideration – 80% of participants responded “agree” or “strongly agree” for importance and circumpolar relevance

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses

Determinants*of*health**

Teenage*pregnancy** 6.35* 7* 1.08* 93* 0* 6.5* 7* 1.09* 93* 0* 6.5* 7* 0.65* 93* 0* 6.5* 7* 0.65* 93* 0*

Advanced*maternal*age* 4.79* 4.5* 1.53* 29* 0* 4* 4* 1.30* 7* 0* 6.14* 6* 0.86* 86* 0* 6.14* 6* 0.86* 86* 0*

Maternal*BMI* 5.79* 6* 1.19* 64* 0* 5.79* 6* 1.12* 57* 0* 5.43* 5.5* 1.22* 50* 0* 5.14* 5* 1.41* 43* 0*

Maternal*education*level* 6.43* 6.5* 0.64* 93* 0* 6.5* 7* 0.65* 93* 0* 6.21* 6* 0.58* 93* 0* 6.07* 6* 0.73* 79* 0*

Domestic*violence* 6.71* 7* 0.61* 93* 0* 6.79* 7* 0.43* 100* 0* 4.79* 5* 1.52* 29* 0* 4.07* 4* 1.38* 7* 0*

Smoking*during*pregnancy* 6.86* 7* 0.36* 100* 0* 6.86* 7* 0.36* 100* 0* 5.5* 6* 1.45* 64* 0* 5.14* 5.5* 1.56* 50* 0*

Use*of*illicit*drugs*during* 6.79* 7* 0.43* 100* 0* 6.36* 7* 1.60* 93* 0* 4.86* 5* 1.35* 21* 0* 4.29* 4* 1.38* 14* 0* pregnancy* Use*of*alcohol*during* 6.79* 7* 0.43* 100* 0* 6.71* 7* 0.47* 100* 0* 4.86* 5* 1.41* 29* 0* 4.36* 4* 1.45* 21* 0* pregnancy* Exposure*to*envt.* 5.86* 6* 1.03* 70* 0* 6.07* 6* 0.83* 86* 0* 4.93* 5* 1.44* 36* 0* 4.79* 5* 1.48* 36* 0* contaminants*

Stressors*during*pregnancy* 5.14* 6* 1.75* 50* 0* 5.43* 6* 1.87* 64* 0* 4.14* 4* 1.46* 14* 0* 3.71* 3.5* 1.54* 14* 0*

Breastfeeding*practices* 6.79* 7* 0.58* 93* 0* 6.79* 7* 0.59* 93* 0* 5.50* 6* 1.65* 64* 0* 5.28* 5* 1.54* 43* 0*

Involvement*of*child*and* 5.92* 6* 1.04* 71* 7.14* 5.50* 6* 1.61* 71* 0* 4.71* 5* 1.33* 14* 0* 4.28* 4* 1.38* 14* 0* family*services* Maternal*Hx*of*adverse* 6.07* 7* 1.38* 79* 0* 6.15* 6.5* 1.10* 79* 0* L* L L L L L L L L L childhood*experiences*

172

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses

Income*distribution* 6.36* 6.5* 0.74* 86* 0* 6.29* 7* 0.91* 71* 0* L* L L L L L L L L L

Food*insecurity* 6.71* 7* 0.47* 100* 0* 6.71* 7* 0.47* 100* 0* L* L L L L L L L L L

Maternal*physical*activity* 5.86* 6* 1.03* 71* 0* 5.71* 6* 1.07* 57* 0* L* L L L L L L L L L

Maternal*oral*health* 6* 6* 0.96* 71* 0* 6.21* 6.5* 0.97* 79* 0* L* L L L L L L L L L

Maternal*smokeless* 5.58* 5.5* 1.08* 50* 14.29* 5.17* 5.5* 1.53* 50* 14.29* L* L L L L L L L L L tobacco*use* Maternal*housing*(crowded* 6.43* 7* 0.94* 86* 0* 6.57* 7* 0.65* 93* 0* L* L L L L L L L L L or*underLhoused)* Health*outcomes**

Anemia* 6.43* 6.5* 0.65* 93* 0* 6.42* 6.5* 0.65* 93* 0* 6.14* 6* 0.66* 86* 0* 6.14* 6* 0.66* 86* 0*

Eclampsia* 5.92* 6* 0.92* 71* 0* 5.71* 6* 0.91* 57* 0* 6.29* 6* 0.73* 86* 0* 6.28* 6* 0.73* 86* 0*

Diabetes*in*pregnancy* 6.57* 7* 0.51* 100* 0* 6.43* 6* 0.51* 100* 0* 5.93* 6* 0.73* 86* 0* 5.86* 6* 0.77* 79* 0*

Spontaneous*abortions* 5.64* 6* 1.08* 57* 0* 5.14* 5* 1.41* 43* 0* 4.86* 5* 1.23* 29* 0* 4.64* 5* 1.39* 29* 0*

Stillbirths* 6.29* 6* 0.61* 93* 0* 6.21* 6* 0.70* 86* 0* 6.21* 6* 0.70* 86* 0* 6.21* 6* 0.70* 86* 0*

Perinatal*deaths* 6.60* 7* 0.63* 93* 0* 6.64* 7* 0.63* 93* 0* 6.57* 7* 0.65* 93* 0* 6.50* 7* 0.65* 93* 0*

Preterm*birth* 6.86* 7* 0.36* 100* 0* 6.90* 7* 0.36* 100* 0* 6.36* 6.5* 0.75* 86* 0* 6.21* 6* 0.70* 86* 0*

Maternal*Mortality* 6.79* 7* 0.43* 100* 0* 6.57* 7* 0.85* 93* 0* 6.71* 7* 0.47* 100* 0* 6.71* 7* 0.47* 100* 0*

Postpartum*hemorrhage* 6.43* 7* 0.85* 93* 0* 6.50* 7* 0.85* 93* 0* 5.93* 6* 0.92* 71* 0* 5.57* 6* 1.22* 57* 0*

Postpartum*depression* 6.64* 7* 0.85* 93* 0* 6.57* 7* 0.65* 93* 0* 5.14* 5* 1.03* 29* 0* 4.21* 4* 1.48* 21* 0*

173

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses

Neonatal*mortality* 6.86* 7* 0.53* 93* 0* 6.79* 7* 0.58* 93* 0* 6.71* 7* 0.61* 93* 0* 6.71* 7* 0.61* 93* 0*

Congenital*anomalies* 6.36* 7* 0.93* 86* 0* 6.29* 7* 1.14* 86* 0* 6.21* 6* 0.70* 86* 0* 6.00* 6* 0.88* 79* 0*

Small*for*GA*infants* 6.79* 7* 0.43* 100* 0* 6.79* 7* 0.43* 100* 0* 6.29* 6.5* 0.91* 86* 0* 6.00* 6* 1.11* 79* 0*

Low*birth*weight* 6.36* 6.5* 0.74* 86* 0* 6.43* 6.5* 0.65* 93* 0* 6.57* 7* 0.65* 93* 0* 6.57* 7* 0.65* 93* 0*

Large*for*GA*infants* 6.29* 6* 0.61* 93* 0* 6.07* 6* 0.92* 79* 0* 6.21* 6* 0.70* 86* 0* 6.14* 6* 0.66* 86* 0*

5min*Apgar*score*<*7* 5.79* 6* 1.12* 64* 0* 5.57* 6* 1.40* 64* 0* 5.64* 6* 0.84* 57* 0* 5.43* 5* 0.85* 36* 0*

Efficacy**

Folic*acid*supplementation* 5.93* 6* 0.62* 79* 0* 5.50* 6* 1.29* 64* 0* 5.00* 5* 1.36* 29* 0* 4.29* 4* 1.27* 14* 0*

HIV*testing* 5.64* 5.5* 0.93* 50* 0* 5.00* 5* 1.30* 29* 0* 6.07* 6* 0.92* 79* 0* 6.21* 6* 0.89* 86* 0*

Folic*acid*supplementation* 5.93* 6* 0.62* 79* 0* 5.50* 6* 1.29* 64* 0* 5.00* 5* 1.36* 29* 0* 4.29* 4* 1.27* 14* 0*

Post*term*birth* 5.14* 5* 1.10* 29* 0* 4.5* 5* 1.34* 7* 0* 5.86* 6* 0.95* 64* 0* 5.86* 6* 0.95* 64* 0*

Induction*and* 5.50* 5* 0.85* 43* 0* 5.00* 5* 1.11* 21* 0* 5.79* 6* 0.80* 71* 0* 5.93* 6* 0.62* 79* 0* augmentation*of*labour*

VBAC* 5.71* 6* 1.14* 71* 0* 5.00* 5.5* 1.57* 50* 0* 6.07* 6* 0.62* 86* 0* 6.21* 6* 0.58* 93* 0*

Instrumental*vaginal* 5.55* 5.5* 1.16* 50* 0* 4.86* 5* 1.46* 29* 0* 6.07* 6* 0.62* 86* 0* 6.00* 6* 0.78* 71* 0* deliveries*

Caesarean*section* 6.07* 6* 1.12* 77* 7.14* 5.31* 6* 1.43* 54* 7.14* 6.46* 6* 0.52* 100* 7.14* 6.50* 6.50* 0.52* 100* 14.28*

Post*partum*infections* 5.93* 6* 0.73* 86* 0* 5.50* 6* 1.29* 79* 0* 5.07* 5* 1.33* 43* 0* 4.79* 5* 1.48* 36* 0*

Maternal*readmission*to* 5.93* 6* 0.83* 79* 0* 5.57* 6* 1.45* 64* 0* 5.79* 6* 0.70* 64* 0* 5.71* 6* 0.73* 57* 0*

174

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses hospital*

Postpartum*family*planning* 6.36* 7* 1.10* 79* 0* 6.43* 7* 0.94* 86* 0* 5.36* 5.5* 1.15* 50* 0* 4.93* 5* 1.21* 21* 0*

NICU*admissions* 6.23* 6* 0.44* 100* 7.14* 6.00* 6* 0.82* 85* 7.14* 6.29* 6* 0.47* 100* 0* 6.36* 6* 0.50* 100* 0*

Neonatal*readmission*to* 6.07* 6* 1.00* 86* 0* 6.00* 6* 0.97* 86* 0* 5.93* 6* 1.49* 93* 0* 5.71* 6* 1.49* 79* 0* hospital*

Vitamin*D*supplement*use* 6.14* 6* 0.95* 79* 0* 6.07* 6* 0.92* 79* 0* L L L L L L L L L L

L L L L L L L L L L Prenatal*vitamin*use* 6.07* 6* 0.92* 79* 0* 5.93* 6* 0.92* 71* 0*

Screening*for*gestational* L L L L L L L L L L 6.29* 6* 0.73* 86* 0* 6.14* 6* 0.95* 79* 0* diabetes* Rate*of*unintended* L L L L L L L L L L 5.93* 7* 1.73* 71* 0* 5.78* 6.5* 1.72* 64* 0* pregnancies* Safety*

Births*without*obstetric* 6.43* 7* 0.85* 93* 0* 6.21* 6* 0.89* 86* 0* 5.5* 6* 1.45* 64* 0* 5.43* 6* 1.45* 57* 0* intervention*

Perineal*trauma* 5.93* 6* 0.83* 79* 0* 5.29* 6* 1.44* 57* 0* 6.00* 6* 0.55* 86* 0* 5.86* 6* 0.66* 71* 0*

Transfers*for*obstetrical* L L L L L L L L L L 6.54* 7* 0.88* 92* 7.14* 6.53* 7* 0.97* 85* 7.14* indications* Unplanned*births*in*the* L L L L L L L L L L 6.67* 7* 0.65* 92* 14.29* 6.50* 7* 1.00* 83* 14.29* community* Responsiveness*

Characteristics*of*care* 6.62* 7* 0.77* 85* 7.14* 6.50* 7* 1.09* 93* 0* 5.53* 6* 1.27* 62* 7.14* 5.54* 6* 1.27* 62* 7.14* providers*

Cultural*competency* 6.61* 7* 1.12* 92* 7.14* 6.64* 7* 0.93* 86* 0* 5.31* 5* 1.25* 38* 7.14* 5.15* 5* 1.28* 31* 7.14*

175

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses

Patient*reported*unfair* treatment*based*on* 6.53* 7* 1.13* 92* 7.14* 6.5* 7* 1.09* 86* 0* 5.21* 5.5* 1.31* 50* 0* 4.79* 5* 1.25* 21* 0* ethnicity* Patient*reported*support* 6.69* 7* 1.11* 92* 7.14* 6.5* 7* 1.16* 86* 0* 5.29* 5.5* 1.38* 50* 0* 5.07* 5* 1.44* 57* 0* during*labour*and*birth*

Use*of*analgesia*in*labour* 5.46* 5* 1.20* 38* 7.14* 5.00* 5* 1.35* 31* 7.14* 5.69* 6* 1.03* 62* 7.14* 5.77* 6* 0.93* 62* 7.14*

Mother*infant*contact*at* 6.46* 7* 0.66* 92* 7.14* 5.64* 6* 1.50* 64* 0* 5.07* 5* 1.33* 43* 0* 5.00* 5* 1.36* 43* 0* birth* Presence*of*breast*feeding* 6.38* 7* 1.12* 92* 7.14* 6.29* 7* 1.14* 86* 0* 5.08* 5* 1.14* 29* 0* 4.79* 5* 1.12* 14* 0* support*programs* Patient*reported* 6.69* 7* 0.48* 100* 7.14* 6.64* 7* 0.50* 100* 0* 5.57* 5.5* 1.34* 50* 0* 5.00* 5* 1.36* 43* 0* satisfaction*with*care* Gestational*age*at*which* patients*are*transferred* 6.15* 7* 1.07* 69* 7.14* 6.46* 7* 0.97* 85* 7.14* L L L L L L L L L L firth*birth** Accessibility*

Frequency*and*timing*of* 6.57* 7* 1.09* 93* 0* 6.5* 7* 1.09* 93* 0* 5.93* 6* 1.33* 79* 0* 5.64* 6* 1.34* 71* 0* antenatal*care*

Prenatal*care*provider* 6.62* 7* 0.51* 100* 7.14* 5.86* 6* 1.41* 79* 0* 5.69* 6* 1.32* 69* 7.14* 5.77* 6* 1.30* 77* 7.14*

Use*of*antenatal*ultrasound* 6.14* 6* 0.77* 93* 0* 6.00* 6* 1.24* 93* 0* 5.93* 6* 1.27* 86* 0* 5.86* 6* 1.29* 79* 0*

Induced*abortions* 6.21* 7* 1.63* 86* 0* 6.29* 7* 1.33* 86* 0* 6.00* 6* 1.30* 86* 0* 5.71* 6* 1.33* 79* 0*

Birth*attendant* 6.86* 7* 0.36* 100* 0* 6.87* 7* 0.36* 100* 0* 6.07* 6* 1.27* 93* 0* 6.00* 6* 1.24* 93* 0*

FHR*monitoring*during* 4.62* 5* 1.50* 54* 7.14* 4.54* 4* 1.51* 46* 7.14* 5.08* 6* 1.55* 54* 7.14* 5.23* 5* 1.54* 46* 7.14* labour*

Place*or*setting*for*birth** 6.23* 7* 1.17* 85* 7.14* 6.14* 7* 1.41* 79* 0* 5.64* 6* 1.22* 71* 0* 5.64* 6* 1.28* 64* 0*

176

Round*2*ratings* Importance* Circumpolar*relevance* Validity* Reliability* * * * * Indicator* * * * * (%) (%) (%) (%) * * * * * * * * 6*(%)* 6*(%) 6*(%) 6*(%) * * * * ≥ ≥ ≥ ≥ * * * * * * * * * * * * ngs * * * * Mean Median SD Percent*of Rati Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses Mean Median SD Percent*of Ratings Missing* responses

Travel*to*place*of*birth* 6.61* 7* 1.12* 92* 7.14* 6.71* 7* 0.83* 93* 0* 6.00* 6* 1.30* 86* 0* 5.93* 6* 1.27* 86* 0*

Postpartum*visits* 6.64* 7* 0.50* 100* 0* 6.21* 7* 1.37* 86* 0* 5.64* 6* 1.22* 71* 0* 5.50* 6* 1.16* 64* 0*

Maternity*care*provider*in* L L L L L L L L L L 6.64* 7* 0.63* 93* 0* 6.43* 7* 0.94* 86* 0* patient’s*community* Maternity*care*provider* L L L L L L L L L L that*speaks*the*same* 6.31* 7* 1.18* 85* 7.14* 6.42* 7* 0.76* 86* 0* language*or*is*from*the* same*culture*as*the*patient* Cost/Expenditure*

Cost*of*maternity*care*per* 5.61* 5* 0.96* 46* 7.14* 5.64* 5.5* 0.93* 50* 0* 4.79* 5* 1.25* 29* 0* 4.50* 4.5* 1.22* 14* 0* patient*

Maternal*LOS* 5.50* 6* 1.22* 57* 0* 5.07* 5* 1.27* 43* 0* 4.92* 5.0* 1.19* 64* 7.14* 5.00* 5* 1.24* 36* 0*

Neonatal*LOS* 5.71* 6* 0.91* 57* 0* 5.64* 6* 1.01* 57* 0* 5.29* 6* 1.27* 57* 0* 5.29* 6* 1.27* 57* 0*

Cost*to*obtain*standard*of* L L L L L L L L L L 6.27* 7* 1.10* 73* 21.42* 6.5* 7* 0.80* 83* 14.28* care*

177

Appendix(7(–(Workshop(agenda(

Circumpolar Maternal Child Health Workshop April 1st, 2016 8:30 am – 4:30 pm Northern Frontier Visitors Centre Yellowknife, Northwest Territories, Canada

Agenda ! Workshop!goals:! ! •( To#review#the#findings#of#an#online#study#looking#at#performance#measurement# for#circumpolar#maternal#health#care## # •( To#identify#areas#not#captured#in#the#study#and#explore#the#implications#of#such# gaps# # •( To#make#recommendations#for#measurement#and#evaluation#in#circumpolar# regions## # # Thursday,!March!31,!2016! Time! Item! # ! 6:00#pm# Welcome!Dinner! •( Trader’s#Grill#(Explorer#Hotel)# # ! ! Friday,!April!1,!2016! Time# Item# # ! 8:30#D#9:30## Opening!Prayer! # Welcome!&!introductions!! •( Roles,#expertise,#interests# Housekeeping! •( Workshop#schedule,#consent# # #

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# # # Time# Item# # # 9:30#D#12:00# Overview!&!Background!! # •( What#is#health#systems#performance#measurement?# •( The#circumpolar#context## # Coffee!break! # Presentation!and!discussion!of!study!findings!! •( Presentation#of#scoping#review#and#Delphi#consensus#project#findings# •( Identification#of#key#indicators#for#further#discussion# •( Identification#of#gaps#in#the#study#findings## # # # 12:00#–#1:00# Lunch! •( Museum#Cafe# # # # 1:00#D#3:00# Talking!Circle!M!Community!perspectives!on!Maternal!Child!Health!Systems! # •( Reflection#on#key#items#identified#in#morning#session# •( Discussion#of#Indigenous#knowledge#and#community#practices# # # # 3:00#–#4:00## Performance!measurement!framework!discussion! (if#time)# •( Presentation#of#current#Delphi#findings#in#a#modified#OECD#framework# •( Discussion#of#the#modified#OECD#framework#in#the#circumpolar#context# # # # 4:00#D#4:30# Closing!remarks!! •( Next#steps#on#research#and#dissemination## #

( ( (