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Leaving No One Behind in Long-Term Care: Enhancing Socio-Demographic Data Collection in Long-Term Care Settings

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Leaving No One Behind in Long-Term Care: Enhancing Socio-Demographic Data Collection in Long-Term Care Settings Leaving No One Behind in Long-Term Care: Enhancing Socio-Demographic Data Collection in Long-Term Care Settings July 2021 Leaving No One Behind in Long-Term Care Settings National Institute on Ageing & Wellesley Institute Suggested Citation: Flanagan, A., Um, S., Sinha, S., Roche, B., Rosenburg, J., Nicin, M., McKenzie, K. (2021). Leaving no one behind in long-term care: Enhancing socio-demographic data collection in long-term care settings. Toronto, ON: National Institute on Ageing, Ryerson University and Wellesley Institute. ISBN: 978-1-77417-026-7 © National Institute on Ageing, Ryerson University, Toronto Mailing Addresses: National Institute on Ageing Ted Rogers School of Management 350 Victoria St. Toronto, Ontario M5B 2K3 Canada Wellesley Institute Temporary Address 26 Wellington St E, 12th floor, Toronto, Ontario M5E 1S2 Canada 2 Leaving No One Behind in Long-Term Care Settings About the National About Institute on Ageing Wellesley Institute The National Institute on Ageing (NIA) is a Wellesley Institute is a non-profit public policy and research centre based at and non-partisan research and policy Ryerson University in Toronto. The NIA is institute that focuses on health and dedicated to enhancing successful ageing health equity in the Greater Toronto Area. across the life course. It is unique in its Wellesley Institute’s mission is to advance mandate to consider ageing issues from population health and reduce health a broad range of perspectives, including inequities by driving change on the social those of financial, physical, psychological, determinants of health through applied and social well-being. research, effective policy solutions, knowledge mobilization, and innovation. The NIA is focused on leading cross- disciplinary, evidence-based, and Wellesley Institute’s recent work on actionable research to provide a blueprint seniors’ care has focused on mitigating for better public policy and practices health inequities among older adults and needed to address the multiple challenges enhancing long-term care and home and and opportunities presented by Canada’s community care for older immigrants; as ageing population. The NIA is committed well as supports for family caregivers from to providing national leadership and diverse ethno-cultural communities. public education to productively and collaboratively work with all levels of government, private and public sector partners, academic institutions, ageing- related organizations, and Canadians. 3 Leaving No One Behind in Long-Term Care Settings Authors This report was written by: Dr. Ashley Flanagan Research Fellow, National Institute on Ageing, Ryerson University Dr. Seong-gee Um Researcher, Wellesley Institute Dr. Samir Sinha Director of Health Policy Research, National Institute on Ageing, Ryerson University Dr. Brenda Roche Director of Research, Wellesley Institute Jesse Rosenburg Director of Policy, Wellesley Institute Michael Nicin Executive Director, National Institute on Ageing, Ryerson University Dr. Kwame McKenzie Chief Executive Officer, Wellesley Institute 4 Leaving No One Behind in Long-Term Care Settings Table of Contents Executive Summary 6 Introduction 8 Why Is Collecting Socio-Demographic Data Important? 11 What Do We Currently Know About Health and Health Inequities in LTC 14 Homes? Existing Approaches to Collecting Socio-Demographic Data 14 Health Inequities in Long-Term Care: Evidence from Canadian and International Literature 23 Current Initiatives to Enhance Socio-demographic Data Collection in 27 Health and LTC Settings Measuring Health Equity in Toronto Central LHIN 27 Pan-Canadian Standards for Collecting Race-Based and Indigenous Identity in Health Systems 31 by Canadian Institute for Health Information Disaggregated Demographic Data Collection in British Columbia: The Grandmother Perspective 34 by British Columbia’s Office of the Human Rights Commissioner Race and Ethnicity Data Collection During COVID-19 36 Challenges and Opportunities to Enhance Socio-demographic Data 40 Collection Moving Forward: Recommendations for Enhanced Socio-Demographic 44 Data Collection in LTC Settings Conclusion 49 References 50 5 Leaving No One Behind in Long-Term Care Settings Executive Summary The COVID-19 pandemic has taken a Canadians living in long-term care settings will disproportionate toll on Canada’s most continue to be misunderstood and preventable vulnerable populations. With growing inequities in care and outcomes will persist. evidence on the inequitable impacts of COVID-19 across Canada, it is reasonable to Canada continues to lag behind other assume that similar impacts have occurred, countries (e.g., United Kingdom, Australia, and will continue to occur, amongst the United States) in collecting population-based diverse population groups of Canadians socio-demographic data—such as ethnicity, living and working in long-term care settings. race, gender identity, and sexual orientation. Unfortunately, due to the long-standing There are, however, several sources of data failure to collect in-depth socio-demographic which provide insight into Canada’s older data in long-term care settings, it is currently adult population, as well as the portion of not possible to understand the full scope the Canadian population currently residing of the pandemic’s impact on residents and in long-term care settings. These include: workers in Canada’s long-term care settings. Canadian Institute for Health Information’s (CIHI) Continuing Care Reporting System Socio-demographic data is an important tool (CCRS) and Statistics Canada’s Census of the for measuring and reducing health disparities Population, Canadian Community Health among people across different population Survey, and Nursing and Residential Care groups and from different backgrounds. Facility Survey. However, CIHI acknowledges Evidence from Canadian literature clearly that the CCRS, along with other CIHI and demonstrates that health outcomes differ Statistics Canada health data repositories, based on social and demographic factors fail to capture the information that can be such as sexual orientation, gender identity, effectively used to identify health inequities language, race, immigration status, and among people living and working in Canadian ethnicity, as well as access to affordable long-term care homes. By addressing this lack housing, adequate income, social inclusion of socio-demographic data, we will begin to and other factors. While limited, current build a better understanding of the diverse research findings shed light on some of the populations living in long-term care settings, existing inequities in Canadian long-term which will enable us to develop more targeted care settings, highlighting the importance of interventions to effectively address any existing collecting and analyzing socio-demographic health disparities. This report highlights that data, as well as the need for better data reliably collecting in-depth socio-demographic collection on diverse population groups data across Canada would enable better policy living in long-term care settings. This report and planning processes to address known makes clear that without taking steps to gaps in care options for Canadians of all enhance the collection of socio-demographic backgrounds. data in long-term care settings, the needs of 6 Leaving No One Behind in Long-Term Care Settings In addition to the Census and sample surveys To facilitate enhanced socio-demographic briefly mentioned above, some promising data collection in long-term care settings, examples have been developed to collect lessons were drawn from existing initiatives. enhanced socio-demographic data through We have identified five key areas of administrative data in health and long-term consideration related to data collection and care settings. These include: Toronto Central use. We conclude this report by offering the LHIN’s Measuring Health Equity, CIHI’s Pan- following key recommendations to move Canadian Standards for Collecting Race-Based forward with planning and delivering long- and Indigenous Identity in Health Systems, and term care that ensures health equity for older British Columbia’s Office of Human Rights’ Canadians: Disaggregated Demographic Data Collection in British Columbia: The Grandmother Perspective. 1. Ensure clarity exists amongst individuals Recently, there has been growing consensus living and working in long-term care on developing a standardized set of socio- settings about the purposes of socio- demographic data that is comparable and demographic data collection. linkable across jurisdictions and sectors. In 2. Build trust through community particular, enhancing data collection in the engagement in the design and domains of age, sex assigned at birth, gender implementation of socio-demographic identity, sexual orientation, race, ethnicity, data collection initiatives. language, and Indigenous identity. As each of the above initiatives seek to enhance the 3. Ensure standardized socio-demographic collection of socio-demographic data in the data is collected across Canada’s long- Canadian context, this report also offers term care settings. reflections on the facilitators and barriers to 4. Ensure appropriate skills, training and the collection of such data. understanding for those collecting socio- demographic data. As we turn to current initiatives for guidance 5. Ensure a commitment is developed to on the collection of enhanced socio- effectively and appropriately use the demographic data, it is reasonable to ask why socio-demographic
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