British Columbia Centre of Excellence for Women’s Health

Centre d’excellence de la Columbie-Britannique Executive Editor Lorraine Greaves pour la santé des femmes Copy Editor Robyn Fadden Graphic Design Michelle Sotto & lllustration Main Office E311 - 4500 Oak Street Vancouver, British Columbia V6H 3N1 Canada Tel 604.875.2633 Canadian Cataloguing in Publication Data Fax 604.875.3716 Email [email protected] Greaves, Lorraine Web www.bccewh.bc.ca Fusion : a model for integrated health research

Women’s Health Reports (Women’s health reports, ISSN 1481-7268) Copyright © 2001 by British Papers from Fusion : a Symposium on Integrated Columbia Centre of Excellence Research held April 26-28, 2000 in Vancouver, B.C. for Women’s Health Includes bibliographical references. 1. Women—Health and hygiene—Research— All rights reserved. No part of Canada—Congresses. 2. Medicine—Research— this report may be reproduced Canada—Congresses. I. Ballem, Penny. II. BC Centre by any means without the written of Excellence for Women’s Health. III. Symposium on permission of of the publisher, Integrated Research (2000 : Vancouver, B.C.) IV. Title. except by a reviewer, who may V. Series: Women’s health reports (Vancouver, B.C.). use brief excerpts in a review. RA564.85.G73 2001 ISSN 1481-7268 613'.04244’072071 ISBN 1-894356-43-8 C2001-911441-9 Contents

Acknowledgements ...... 1 I. About This Report ...... 3 II. General Trends in Research ...... 5 III. Integrated Research in the CIHR Context ...... 6 IV. Integrated Approach to Research ...... 7 V. Women’s Health Research: A Model for Integrated Research ...... 8 VI. Sex, Gender and Women’s Health...... 9 VII. The Current Issues: Challenges to Integrated Research ...... 10 A. Defining Partnerships ...... 11 B. Creating Authentic Partnerships ...... 11 C. Academic Reward Structures ...... 13 D. Funding Routes ...... 13 E. Timely and Effective Knowledge Uptake ...... 14 F. Conflict Resolution and Avoidance ...... 15 G. Speaking Different Languages ...... 15 H. Stereotypes ...... 15 I. Territoriality ...... 17 J. Power/Control ...... 18 K. Bureaucratic Barriers ...... 19 VIII. Opportunities of Integrated Research ...... 21 A. Guidelines ...... 21 B. Funding Mechanisms...... 22 C. Peer Review ...... 23 D. Journals and Reports ...... 23 E. Knowledge Uptake ...... 24 F. Cultural Shifts ...... 24 IX. Conclusion ...... 26 X. The Fusion Model ...... 27 A. Accomplishing Integrated Research ...... 27 B. Assuring Relevance to Communities ...... 27 C. Identifying the Entry Points for Researchers ...... 27 D. Integrating Sex and Gender into Health Research ...... 27 E. Changing Paradigms to Ensure Broader Thinking ...... 28 F. Adding Policy to the Discussion ...... 28 G. Operationalizing Integrated Research ...... 28 H. Ensuring Knowledge Exchange and Return ...... 29 XI. Integrated Research Program: Examples ...... 30 A. Biomedical: Development and Use of Artificial Hemoglobin . . 30 B. Applied Clinical: Women and Heart Transplantation ...... 31 C. Health Services and Systems: Homecare ...... 32 D. Social and Cultural Dimensions: Diabetes and Aboriginal Women ...... 33 Appendix 1: The Steering Committee for the Project Women’s Health in the Canadian Institutes of Health Research . . . 34 Appendix 2: The Working Group on Gender and Women’s Health in the CIHR ...... 36 Appendix 3: Fusion: A Symposium on Integrated Research – Speaker and Participant List ...... 39 Appendix 4: Fusion: A Symposium on Integrated Research – Agenda ...... 42 Endnotes ...... 45 References ...... 46 Acknowledgments Many ideas have flowed into this report from a wide variety of sources, in Canada and abroad. It is the culmination of discussion and collabora- tion between several key groups interested in advancing health research in Canada. The report captures some preliminary themes on integrated health research, as well as aspects of the work embedded in the following projects, groups and events.

The Steering Committee for the project Women’s Health in the Canadian Institutes of Health Research funded by the Medical Research Council of Canada (MRC)(Appendix 1), chaired by Penny Ballem (Children’s & Women’s Health Centre of British Columbia), devoted many hours to building a consortium and planning a national meeting, coordinated by Kathleen Whipp, to develop a research agenda for women’s health in the Canadian Institutes of Health Research (CIHR).

The Working Group on Gender and Women’s Health in the CIHR, a cross-national group of academics, advocates and policy personnel (Appendix 2), engaged in activities and discussions related to the CIHR. This group worked with the Steering Committee for the MRC-funded project to develop the agenda and elements of the national meeting. The group’s co-chairs were Penny Ballem and Karen Grant (University of Manitoba), and the coordinator was Amanda Kobler.

The British Columbia Centre of Excellence for Women’s Health (BCCEWH) developed the concept and the initial design of the Fusion model after consultations with the Steering Committee for the MRC project. Key contributors include Lorraine Greaves (Executive Director, BCCEWH), Joan Bottorff (Faculty of Nursing, UBC), Kathleen Whipp (MRC project coordinator), Robyn Fadden (Publications Coordinator, BCCEWH) and Michelle Sotto (Graphic Designer, BCCEWH). Its current iteration is the result of processes of discussion and modification during and since Fusion: A Symposium on Integrated Research, a two- day event held in Vancouver in April 2000.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 1 The speakers and attendees at Fusion: A Symposium on Inte- grated Research (Appendix 3) offered comments on an early draft of the Fusion model, and partici- pated in discussion around all of the themes addressed in the agenda (Appendix 4).

The entire team at the BCCEWH carried out coordination, support and process reporting for the Fusion symposium. Teresa Yun Hee Lee served as an excellent research assistant. She collated and reviewed the tapes, processed notes and examples brought forward from the Fusion symposium, and provided preliminary drafts of several illustra- tive sections in this report.

Finally, we gratefully acknowledge the following funders for their gener- ous support. The Medical Research Council of Canada, British Columbia’s Women’s Hospital and Health Centre, the Women’s Health Bureau of Health Canada and the British Columbia Centre of Excellence for Women’s Health.

2 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH About This Report

I Fusion: A Model for Integrated Health Research is the third in a series of documents published by the British Columbia Centre of Excellence for Women’s Health, and represents the thinking of various constellations of women’s health researchers in Canada. The develop- ment of the Canadian Institutes of Health Research (CIHR) in June 2000, served as a catalyst for discussions and meetings on the com- plex issues of integrated health research.

The first report CIHR 2000: Sex, Gender and Women’s Health (1999) was the result of an investigation into the international literature on gender and women’s health research and on mechanisms for address- ing sex and gender in health research. It outlined the logic of various approaches and concluded that a separate Institute on Women’s Health Research was in the best interests of Canadians to generate specific and needed knowledge on women’s health. This project was supported by the Social Sciences and Humanities Research Council and the Canadian Health Services Research Foundation, and was a key contribution to the debate surrounding the design of the CIHR and its Institutes.

The second report, A Women’s Health Research Institute in the Canadian Institutes of Health Research (2000) was produced on behalf of the Working Group on Gender and Women’s Health in the CIHR. It outlined the specific issues that such an Institute would ad- dress, and the approaches, mechanisms and budget that it would utilize to accomplish both gender mainstreaming and knowledge generation in women’s health.

These reports provided a comprehensive basis for advancing the idea of an Institute devoted to women’s health in the CIHR. The need for such a focus, and the reasons for advancing women’s health research using both gender mainstreaming and specific knowledge generation ap- proaches are clearly articulated in CIHR 2000. In A Women’s Health Research Institute in the Canadian Institutes of Health Research the structure and processes are described that would provide a thor- ough treatment of women’s health research in Canada.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 3 This report, Fusion: A Model for Integrated Health Research, addresses the processes of doing research in an increasingly complex and demanding environment. Key to its goal is to articulate how integrated health research can be carried out effectively, enhancing the best aspects of interdisciplinary approaches. It proposes a model to guide every aspect of the research process from generating a research question to knowledge uptake. The elements of the Fusion model are presented here in a working, mov- able diagram that will serve as a guide to integrated research devel- opment in any area of research.

4 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH II General Trends in Research Canadian health research has been affected by several important trends over the past few years. Multidisciplinary and interdisciplinary research is more often encouraged, and collaboration between researchers in innovative partnerships is a key element of such an approach. At the same time, health research is increasingly commercialized, with the introduction of strong funding partners from the private sector. In the context of ongoing health reform, the Canadian health care system is seeking more and better evidence on which to base decision-making. And finally, an aging and aware popula- tion is demanding more direct access to details about research findings connected to health concerns.

In short, the priorities and practices of those who produce and consume health research have shifted in Canada over the past few years. These factors affect not only what research gets done, but also who does it and how. These elements have resulted in more demand for scientific rigour, interdisciplinarity, innovative partnerships and effective knowl- edge exchange.

While funding for health research in Canada has historically been limited, the introduction of the Canadian Institutes of Health Research (CIHR) by the federal government in 2000 heralds a new era in the organization and funding of health research in Canada. The metamor- phosis of the Medical Research Council into the CIHR with a much wider mandate of research has just begun. In addition, the projected increases in federal funding for the CIHR over the next few years are significant and will have a direct impact on the amount of health research undertaken. In this context, there is increased attention being paid to the structures and processes supporting health research in Canada.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 5 III Integrated Research in the CIHR Context Elements of the long-term mandate of the CIHR include the integration and transformation of health research in Canada. This is understood to mean that many disciplines and areas of research will have a place in each of the four pillars1 of the CIHR structure, and that these pillars, in turn, will cut across the work of the Institutes. It is expected that this new structure will both encourage and demand new partnerships and approaches between disciplines and sectors. Further, the introduction of 13 Institutes to manage and govern this expanded agenda will have dual goals: to pursue knowledge generation in the Institute’s area of specialization and to integrate its issues when appropriate with the other Institutes. The sum total of these mandates will, it is hoped, lead to transformation.

Transformation is hard to define, but early discussions at the Interim Governing Council (IGC) of the CIHR indicated that transformation will have occurred when health research is produced out of this new synergy that exhibits momentum, signifies breakthroughs and captures a more comprehensive understanding of health phenomena. In many ways, this will have arrived when disciplines, research teams and Institutes will no longer be conceptualizing and doing research in isola- tion, but rather will be acutely aware of, and linked to, researchers in other domains whose thinking and work affect the whole health picture.

Traditional divisions between biomedical research and “other” ap- proaches will be broken down, and research questions and results will have multi-faceted and truly interdisciplinary2 elements. In addition, the current attribution of higher status and importance to biomedical research over other types will be lessened, and a more complete and robust understanding of health will be fed by a wider and broader per- spective. Ultimately, the health of Canadian women and men should be directly improved in measurable ways.

6 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH IV Integrated Approach to Research The theme of transformation underpins this document, which describes the development of an integrated approach to doing health research. An integrated approach takes into consideration the “what, who and how?” of health research, and contextualizes these questions in the health policy environment. Further, an integrated approach acknowl- edges that the details of establishing the research agenda (what?), the funding of researchers (who?) and the methods and processes of research (how?) are all crucial sites of debate, tension, vested interests and competition. It is also acknowledged that these research structures and processes live in an often politicized, ideological context.

The production of health knowledge, like any other kind, is fraught with the pressures of power, influence and vested interests. To ignore these elements in our discussion of integrating health research would be missing an important step. Nonetheless, the promise of integrated research is being articulated. If the questions of “what, who and how?” are answered in a reflexive, critical manner, the opportunity for trans- forming health research presents itself.

Women and Cardiovascular Disease

Cardiovascular disease has a history of being frequently misdiag- nosed in women because for many years it has been considered a man’s disease and the nuances of how women experience cardiac pain and dysfunction were not appreciated. Drug testing and treat- ments focused on males, and did not take into account physiologic, hormonal and sex-related difference in women versus men. Legato (1998) points out the pitfalls of using an almost exclusively male model for cardiovascular disease, both in diagnosis and treatment. She notes that contrary to myth, more women than men in the U.S. die of heart disease each year. Legato further stresses the importance of appropri- ate diagnosis and treatment individualized with respect to gender, pointing out that much further study needs to be done on the conse- quences of treatment for women with hypertension.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 7 Women’s Health Research: A Model V for Integrated Research

Women’s health research is a useful site and exemplar of developing integrated research approaches. There is a long tradition in women’s health research of pursuing these structural and process questions, which predates the inception of the CIHR. Many of the participants in the groups mentioned in the Acknowledgements section have had experience working in the area of women’s health, as researchers, health professionals, consumer advocates or policy makers. It is rare that such work has taken place in isolation.

The tradition of women’s health research in Canada has been built upon the key elements of integration: partnerships, interdisciplinarity, mixed methodology, reflexivity, and relevant knowledge production and policy uptake. Primary to this approach has been research estab- lished in a feminist tradition, with clear and conscious acknowledgement that the reality of women’s lives forms the backdrop for the research process, and informs the research agenda. The ancient methods of ethnography and narrative building have been underlying elements of women’s health research, in conjunction with newer statistical and quantitative approaches. A modern emphasis on action research has led to policy uptake and concrete change as a result of the research process.

Struggles with partnership development date back more than two decades, and offer a rich history of the issues and solutions in building alliances that are equal and productive. Developing such partnerships offers a relevant source of research topics, and important access to people, perspectives, information and analysis. A strong and consumer- based women’s health movement has grown in Canada since the late 1970s, interacting with researchers from a critical standpoint and culti- vating an audience for relevant research results.

8 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH VI Sex, Gender and Women’s Health There are crucial gendered differences in experiencing health and illness, in receiving and giving treatment and intervention, and in inter- preting experiences that enhance or reduce health. There are critical differences in accessing the health care system, managing health care, working in health care and giving care at home or elsewhere. Taken together, a consistent and conscious accrual of knowledge about sex and gender differences will directly benefit the health of both men and women in Canada. Examples of It is impossible to fully understand the impact of this without fully inte- recent findings grated health research. It is crucial to involve all four pillars of research illustrating the and to consciously develop interdisciplinarity and the use of mixed importance of methodologies. In this way, integrated research that sensitively inte- sex and gender grates both sex and gender will contribute to better science. in health research are provided in The logic and benefit of addressing sex, gender and women’s health the grey boxes in a full program of health research is simple but not widely understood. throughout this In addition to gendered differences, there are critical and under-re- report. searched sex differences that affect health, the course, nature and prevalence of disease, treatment and intervention success, and the development of research questions. Such sex differences go well beyond issues related to reproductivity. Recent research has revealed rapidly increasing discoveries of sex differences across the body and mind that were heretofore unknown. While such new discoveries are always exciting, their emergence serves to repeatedly highlight how much we do not know about the health of women and men.

Women’s health research is a prime example of integrated research in action, and a lively site for developing research techniques and processes that create meaningful and relevant knowledge. Asking questions about sex and gender differences, and using many different disciplinary lenses at once, are fundamental starting points for any health research on the human organism. Failure to do so is simply bad science.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 9 The Current Issues: Challenges VII to Integrated Research

There are many challenges in doing integrated research. A fundamental issue facing many researchers and their leaders is the lack of training in the many approaches to successful collaboration and inter- disciplinarity. While increasing calls for integration are heard, most academic researchers have had little or no exposure to the processes and thinking patterns required to make integrated research happen. Several aspects of integration present challenges such as partnership and capacity building, power sharing, dealing with different perspectives, vested interests, funding rules and territoriality. In addition, professional boundaries and identities sustained by professional education and training often interfere with developing common solutions.

Central to this debate is the question, “Who is a researcher?” Research- ers who are outside the academic paradigm, who may not have tradi- tional qualifications and affiliations, are often players in health research. They may be independent or firm-based consultants, independent scholars, or community-based researchers. They may be policy researchers working for an organization or government agency. They may be industry-based researchers working to advance com- mercial interests.

Identity issues affect all participants, reflecting the varied ways in which research collaborators define themselves and their experiences. Ideolo- gies affect all the players in the collaborative processes who are required to carry out interdisciplinary, integrated research. Pursuing bias-free science or value-free research is impossible, despite the best intentions of researchers and funding agencies. While certain research areas, approaches or players are often dismissed as “political” to diminish their importance, in fact all choices that contribute to knowl- edge building by all players are based on some ideological beliefs and values. Hence, all approaches can be termed “political” in this sense.

10 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH A. Defining Partnerships ants and students all contribute to multi-sectoral research partnerships. One of the key debates at the All of these stakeholders are slowly Fusion symposium surrounded gaining a place at the research table the definition of partnerships and in Canada, but not without struggle. the issues surrounding them, such as the sharing, ownership and Partnerships have been lauded by dissemination of information. The many key research funders, such idea of partnership research is as the CIHR. In its working paper widely supported, but often left on partnership and commercializa- vaguely defined. On one end of tion (1999), it is stated that “partner- the continuum, partnership between ship should be the essence of CIHR.” academia and community is often However, in that document and the assumed standard. On the others, there is a significant empha- other end, partnership means sis on partnerships with the private funding arrangements as a result sector. As Grant, Prior and Stewart of industry and academic agree- (2000) point out, there are several ments. successful models 3 of academic- community and policy research In the former, commercialization partnerships in Canada that serve has little or no place in the idea of as key examples of alternatives or partnership, but in the latter, com- additions to partnerships with the mercialization is often a key param- private sector. eter. In the former, there are many reasons for partnering that are B. Creating Authentic based on relevance, capacity Partnerships building and the desire for different The quality of research partnerships perspectives. In the latter, there has also come under scrutiny. Some are efficiencies, knowledge break- of the issues in building authentic throughs, additive funding formulae partnerships have to do with trans- and commercial applications. parency, power sharing and degree For much partnered research, the of involvement. As the Canadian reality is in between. In addition to Research Institute for the Advance- academics and community groups ment of Women (CRIAW) points out, there are many other players in there are differences between a health research. Policy researchers, partnership in name only and a true policy makers, health system collaboration. One of the conclusions administrators, health care unions in their report, Research Partner- and consumer advocates, consult- ships: A Feminist Approach to Com-

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 11 munities and Universities Working well as the private sector. The caveat Together (1996), states “partner- is that “while welcoming industrial ships that are required as a condi- partnerships, CIHR should ensure tion of funding are not conducive to that its research priorities are set at real collaboration.” CRIAW stresses arm’s length from commercial con- that while “funders use the language cerns” (Canadian Institutes of Health of partnership…[they] do not provide Research, 1999, p.11). Not only do the resources necessary to take the commercial partnerships raise the time to develop a truly egalitarian, spectre of conflicts of interest and respectful process,” noting the potential research process control, importance of a common vision and but they also raise complex issues a balance of power. of intellectual property rights and publication limits. The issues of partners co-funding research raises other challenges. In short, partnerships are now highly The CIHR takes an all-encompass- regarded, sought after, and often a ing view including as potential key aspect of funding approval. research partners government However, the challenges to make agencies/departments, the educa- them authentic, meaningful, ethical tional sector, non-profit agencies, as and uncompromised are yet to be

Women and Asthma

Asthma is another example of a disease that suggests the importance of taking into consideration sex differences. Over the past decade evidence has been mounting slowly to suggest that asthma affects women differently from and more severely than men. A 1998 study by Dr. Anna Day revealed that women were three times more likely than men to be hospitalized for asthma between 1985 and 1995. A 1999 study published in the Archives of Internal Medicine (Singh et al., 1999) showed that women are more likely to be hospitalized for asthma than are men. The study examined emergency department visits for acute asthma and reported that 64.3% were women. In addition, women were 1.5 times more likely to report an ongoing exacerbation. Anna Day of Toronto’s Sunnybrook and Women’s College Health Sciences Centre hopes to tailor asthma care in re- sponse to women’s menstrual fluctuations, as well as pregnancy and menopause.

12 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH fully acknowledged in the wider time and investment of energy. These research community. activities are not fully recognized by the academic promotion and tenure Over the years, researchers doing system as part of research, and integrated research in women’s are often unfunded activities from health have often struggled with the granting agencies’ point of view. many aspects of the differences In addition, the goals of the research between partners, their institutions, partners may differ, and finding the organizations and perspectives. appropriate roles can take time. Some of these problems are Specifically the “impacts” that result outlined in the following sections. from research are often not recog- C. Academic Reward Structures nized or measured in academic reward structures. The demands of academic struc- tures in some ways are not condu- D. Funding Routes cive to partnerships and integrated There is often a desire on the part research. For example, academic of the academic partners or their partners are often pressured by the institution’s administration to have demands of the academic promotion research funds flow through their and tenure system. This system own department at their own univer- measures progress and rewards sity. This narrow option excludes based on the size of the grants other departments and other univer- won and received by the individuals’ sities, not to mention colleges, other home institution, the speed of institutions, research institutes, research progress, the number of centres and community organiza- publications (single-authored, or tions. While these desires are under- first-authored, preferably), and the standable, they do not contribute to location of those publications (peer- the overall spirit of collaboration that reviewed academic journals). While is required to build authentic partner- key documents are routinely pub- ships. Increasingly, co-partnering on lished in the “grey literature” or on research is bringing demands for the web, they are often not counted loosening these rules to more equita- in academic structures. bly distribute the funds, or to have There is still little recognition, time funds flow through more than one or funding for the process of devel- route. However, negotiating these oping partnerships. Such pro- agreements can take time, and does cesses, to be authentic, require not always engender an open col- the development of trust, patience, laborative spirit of trust among

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 13 partners. how findings can be delivered and utilized in a timely and useful fashion. E. Timely and Effective Knowledge Uptake The ability to present research results in a manner relevant to Standpoints and goals affect the partners’ concerns is a skill that knowledge exchange process as academic researchers do not always well. For community and policy- have or are not interested in acquir- making research partners, there ing. Sometimes it is necessary to are often short and sensitive interpret and present results in new timelines in which key findings ways that will directly affect current need to be available and present- issues or policies. The time required able. In addition to questions about for a peer-reviewed journal article to how research can be made as be published is often too long a wait relevant as possible, true to the for such interests to be met. Conse- experiences of the players and their quently, integrated research often constituencies, is the question of precipitates a requirement for differ-

Heart Transplantation

The majority (80%-90%) of heart transplant recipients are male and their caregivers are usually female spouses or other family members. Women are less likely to receive transplanted hearts (1:5), more likely to act as caregivers to HT recipients, and may not be identified in research or statistics. One study showed that women may be disproportionately represented in high-risk HT procedures. The following recommendations are a few of the possible ways of examin- ing the issue of sex and gender differences: sex should be transpar- ent in all reports of HT procedures; evidence-based, gender-sensitive policies should be developed to guide HT practice; and there should be explicit efforts toward gender equity in HT surgical programs. In addition, economic and social policies are needed to support women who act as HT caregivers. Research should be conducted to expand the body of knowledge about women and cardiovascular care – possible areas of focus may be pregnancy and HT, gender differ- ences in CV pathophysiologies, and gender differences relative to HT rejection (Young, 2000).

14 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH ent kinds of writing and reporting of from a difference in the language results, not all of which are recog- and definitions employed by various nized as valuable in academic disciplines and groups. circles and granting agencies, Differences in language and terminol- but are key to providing integrated ogy affect most integrated research research efforts with widespread teams. One conference presenter support. spoke about the “translation problem” F. Conflict Resolution and between the biomedical and social Avoidance science communities, pointing out that while “medical science is fasci- Conflicts do occur between individu- nated by disease, social scientists als, institutions and agencies in abhor the body” (Grant, Prior & partnership research consortia. Stewart, 2000). Grant, Prior and Fusion symposium panelists were Stewart observed that the medical very clear in suggesting that conflict sociologist and social epidemiologist resolution models be set down prior come from two fields that have a lot to beginning the project, in order to in common and yet define terms minimize problems. While this is very differently. Despite standpoint ideal, it is often only when problems and training differences, conscious arise that research teams focus their attempts must be made to simplify attention on issues such as divi- and avoid language that is exclusive. sions of funding, labour, credit and Terminology and jargon that is authorship. Issues about recognition specific to one profession or affiliative of contribution can and ought to be group or another can often be used worked out beforehand. More likely to defend territory, not share it. It is no to present themselves during the coincidence that the demystification research process, however, are of medicine, beginning with language, issues of interpretation, presentation has been a key goal of the women’s and disposition of research results health movement over the past two and data. decades, as language differences G. Speaking Different can be barriers to understanding Languages and access to power.

Interdisciplinarity can be something H. Stereotypes that “allows us to see better and There is no doubt that different more” (Grant, Prior & Stewart, sectors and disciplines harbour 2000), but the complexity of practis- stereotypes about each other. In ing interdisciplinarity often stems addition to bridging differences in

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 15 language and definitions, research- and Stewart (2000), both the stereo- ers from various disciplines or types and the limitations flow in all locations also have to counter directions. While social scientists stereotypes about them or the often criticize biomedical researchers biases they themselves have of biological reductionism “often they towards others. Traditional biomedi- find it harder to think about biological cal research, without the influence pathways to disease than the other of social science health research is way around, and thus may be guilty often perceived to be biologically of social reductionism” (Grant, Prior reductive, impersonal and limited. & Stewart, 2000). In short, stereo- Sociology and other social sciences types about others perpetuate in suffer from being perceived as less order to strengthen one’s own pro- scientific than natural and biomedical fessional or disciplinary identity sciences and consequently have by undermining the image of other less power and prestige. Social standpoints and disciplines. Unfortu- scientists are often perceived as nately, many of these stereotypes “fuzzy-headed” (Grant, Prior & manifest in discussions and judge- Stewart, 2000). ment about methods or theory. In addition, these stereotypes emerge As was pointed out by Grant, Prior in uninformed ways in interdiscipli-

Women and HIV

Recent research findings published in Nature Medicine show that women may be infected by HIV in a different way than men: “Data [from this study] indicate that there are important differences in the transmitted virus populations in women and men, even when cohorts from the same geographic region who are infected with the same subtypes of HIV-1 are compared” (Long et al., 2000). These results suggest that developing a suitable vaccine for women may be more difficult. Earlier studies done in the US and in Europe on how HIV is transmitted focused mostly on men and led researchers to believe that only one strain of the virus was transmitted at the time of infection. The new study seems to confirm that this is true in men, but not in women. This raises the critical issue of treatment for women who are infected with a more complex virus.

16 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH nary grant and publication review which in the best research enter- teams and therefore affect the prises can productively inform an funding and publication of interdisci- approach and point of view. plinary research. I. Territoriality Stereotypes about community or Territoriality is another key challenge non-university based researchers in doing integrated research. Compe- abound as well. There is a widely tition and rivalry to “own” an issue or held assumption that community range of knowledge or to maintain or non-university based researchers “ownership” is often present between are unskilled at research, uninter- disciplines, professions and sectors. ested in theory, or “politically” driven. Within institutions, departments or Myths about academics abound as faculties similar impulses are exhib- well, suggesting that academics are ited toward territoriality, often running impractical, unable to share power counter to engaging in true collabora- and disconnected from everyday tive and interdisciplinary work. Many considerations and life. It is easy to of these territorial impulses are due see how these stereotypes can be to traditional reward systems within fed by the issues that come up in institutions, but others are more collaborative integrated research. pervasively rooted in the mecha- These dichotomous and woolly nisms of power. stereotypes are damaging to the In women’s health research, an development of integrated research. important historical overlay is the Not only is it clear that there are tradition of medicalization of women’s more than these two groups of bodies and male dominance in players in research, but that all of biomedical research and practice the groups can overlap and mem- as both researchers and “subjects.” bers often share several stand- Indeed, the last 30 years of develop- points. For example, academics are ment of the women’s health move- also members of community organi- ment has been predicated on retriev- zations or act as policy consultants. ing control of women’s bodies for Community researchers are often women. In her presentation, Stewart academically prepared or have emphasized the value of women experience in policy development. themselves as consumers and Policy researchers can have com- advocates of women’s health, munity or activist experiences. And asserting, “as long as institutions all groups have experiences across feel they own women the women’s the range of the human condition, health agenda will be stuck” (Grant,

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 17 Prior & Stewart, 2000). Stephenson, tive of one who has worked with from the medical community, raised community organizations. Central the problems of politics, overcoming to the concerns raised by Kosny egos, and the need to compromise were questions revolving around to find common ground the uneven levels of power that may (Stephenson, Amaratunga & Kosny, exist between potential partners 2000). (Stephenson, Amaratunga & Kosny, 2000). J. Power/Control For example, community organiza- The challenge of developing authen- tions that are disadvantaged may be tic partnerships is predicated on willing to agree, implicitly or explicitly, issues of power and control. Power to terms of partnership that are not and control manifest in a range of equal in terms of process or deci- ways, from subtle to overt. Kosny sion-making. Many groups that have spoke about power and control written letters of support, besides issues in partnerships between being listed as a partner, have little academic researchers and commu- actual involvement in the project. nity organizations, from the perspec- Questions of power also affect

Autoimmune Diseases

A recent article on autoimmune disease shows that of the 8.5 million people in the US suffering from autoimmune diseases, 80% are women. Though the ways in which sex contributes to the symptoms, onset and prevalence of automimmune diseases are not yet fully understood, various researchers have been investigating autoimmune disease in the context of women’s life cycles and hormonal differences from men. Caroline Whitacre, Chair of the Department of Molecular Virology, Immunology and Medical Genetics at Ohio State University College of Medicine, is a leading researcher into the autoimmune “gender gap” and a member of the Task Force on Gender, Multiple Sclerosis and Autoimmunity, set up by the US National Multiple Sclerosis Society. Whitacre asserts that “the obvious place to look for these differences [between men and women that would shed light on why women are more likely to be afflicted with autoimmune disor- ders] are in the sex chromosomes” (McCarthy, 2000).

18 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH issues such as which community forward guidelines for research that organization gets chosen to partner clearly place the power in research with an academic body. Kosny on disabled women in the hands of illustrated various disparities in women with disabilities. Claims by power with a scenario of exchange geographically or socially isolated between a community organization populations regarding the use of their member and an academic re- genetic data are also key issues in searcher, warning that partnering negotiating research relationships in is often an academic process that the contemporary arena. community groups are required to K. Bureaucratic Barriers fit into, resulting in a superficial partnership. These are but some of the challenges to doing integrated research. There are Power issues manifest regarding also many bureaucratic barriers or other aspects of the integrated system-based issues that do not fit research process. Different skills well with the current trend toward and perspectives are brought to interdisciplinary and integrated re- a research project, but they are search. Issues as basic as the forms not all treated or regarded equally. required to apply for grants or register Even within academic settings, or for assistance are often a problem. For within community settings, these example, forms and funding methods disparities exist. Disputes about that accept only traditional paradigms ownership of data, authorship or of single Principal Investigator models rights to publication may be intrinsi- are often inadequate or inappropriate. cally about assumptions regarding In addition, there is often no opportunity power and imbalances of power for recognition of other than academic within the research teams. credentials among the partners. This Finally, there are emerging disputes alone can demoralize possible part- or claims about the rights to do ners and dissuade involvement from research on given populations. some partners in the research enter- Aboriginal communities are increas- prise. Along with these limitations, there ingly clear about asking for control are often compensation or honorarium of the research process from the issues, where payment for research outset, to ensure that aboriginal services is often a requirement that is communities are enhanced by not recognized by traditional granting research, not used or exploited. agencies, which are often assuming Similarly, associations representing that an established academic institution women with disabilities have put is supporting the research endeavour.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 19 Women and Research

Studies show that women continue to be under-represented in re- search studies. The Stewart et al. study on the representation of women as clinical research subjects concluded that despite being aware of the importance of recruiting women for research studies, researchers often neglected to plan to recruit women (Stewart et al., 2000). They recommended that as continuing education may not be the solution to the longstanding problem of “genderless research,” guidelines to include women should be set by research funders, ethics committees, scientific journals and legislators. In a recent study Vidaver et al. (2000) carried out a survey of research articles that appeared in the New England Journal of Medicine, the Journal of the American Medical Association, the Journal of the National Cancer Institute, and Circulation from the years 1993, 1995, 1997 and 1998. They concluded that approximately one-fifth of the studies published each year failed to include women as research subjects, and that this figure saw no significant improvement over the five-year period ana- lyzed. Furthermore, only one-quarter to one-third of the studies that included women analyzed data by sex of the subjects, with no signifi- cant change over the time period studied. These findings indicate the need for increased and consistent awareness and monitoring of recruitment of women in clinical research and for the analysis of data by sex of the subjects.

To cite a specific example, while researchers continue their aggressive research on heart disease, they are criticized for their lack of attention to women’s cardiovascular health. In the 80s, governments were criticized for concentrating mostly on men and heart disease research, prompting a series of mandates designed to include more women in studies. Now an evaluation of that effort suggests that although more women are being studied, men continue to the main focus for heart disease research. According to the report of David Harris of Yale College and Dr. Pamela Douglas of the University of Wisconsin School of Medicine in the New England Journal of Medicine (Harris & Douglas, 2000), the number of women participating in clinical trials has increased dramatically, but only because of two studies restricted to women. They report that overall “there has been no change in the sex composition of cohorts in the majority of studies of cardiovascular disease.”

20 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH VIII Opportunities of Integrated Research Despite the complexities and challenges of integrated health research there are many potential advantages. Many of the presenters at the Fusion symposium mentioned the positive aspects, such as the aware- ness that comes from critiquing traditional research tools and from inte- grating the biological and the sociocultural in a way that empowers the individual experiences of women (Grant, Prior & Stewart, 2000). Stewart pointed out the immeasurable value of integrating women themselves as consumers and advocates into the research process (Grant, Prior & Stewart, 2000). Kim-Sing, in her panel discussion of the Vancouver Hereditary Cancer Team, remarked on her pleasant surprise at the kinds of cross-disciplinary questions brought up by various researchers and the “openness in conceptualizing a wide range of research issues” (Bottorff, Burgess & Kim-Sing, 2000).

On a more practical level, partnering facilitates the sharing of resources. In the university-community partnership examples that Kosny mentioned, she pointed out that in the best-case scenario, universities share their wealth of information not readily available to community organizations, while community organizations share their “know-how” in approaching problems in a way that is relevant to those whom the project or research ultimately affects. This symbiotic relationship of shared responsibility in which individual strengths are pooled can be the most obvious advantage of not only partnerships, but also the whole enterprise of integrated research.

A. Guidelines

Grant, Prior and Stewart pointed out the fundamental need to respect the contributions of different disciplines and the adherence to intellectual rigour. Kosny, in speaking about partnerships from the more specific perspective of one who has worked with community organizations, made the following recommendations for university-community partner- ships – recommendations that can obviously be applied more generally. She names the following elements of partnering for research purposes as preferred: transparency of process, the opportunity for both groups to clearly express needs and expectations, agreements in writing and

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 21 in detail, alternate meeting sites required by funding programs the where all members will feel welcome, procedures of application and award- explanation of all jargon and abbre- ing or grants is predicated on the viations, electing rotating co-chairs academic model. Implicit in the appli- (one from the academic side, one cation forms and the requirements for from the community organization) to academic-style CVs is the centrality lead discussions, electing a liaison of the academic record and publica- member to communicate with mem- tion profile of the applicant. This bers and monitor the quality of approach to applications and propos- partnership, and the development of als is often alienating to non-academic university guidelines for partnering or non-university based researchers, with community groups (Stephenson, and can send a message at the Amaratunga & Kosny, 2000). beginning of the research process of differential valuing of types of B. Funding Mechanisms experiences or career records. There are significant and productive After the proposal is submitted, changes that could be made in peer review committees make ranking funding practices for research. At and awards decisions. Often these the moment, even when collaborative committees are not fully representa- partnerships are encouraged or tive of the types of applicants. Finally,

Effects of Alcohol on Women’s Brains

New research suggests that alcoholism may have a particularly damaging effect on women’s brains. The 2001 study lead by Daniel Hommer and his colleagues at the National Institute on Alcohol Abuse and Alcoholism, “compare[d] the brain volumes of alcoholic and non- alcoholic men and women [to] determine if the magnitudes of differ- ence in brain volumes between alcoholic women and non-alcoholic women are greater than the magnitudes of the differences between alcoholic men and non-alcoholic men.” The results of the study, which are consistent with greater vulnerability to alcohol neurotoxicity among women, showed that “the differences in gray and white matter volumes between alcoholic and non-alcoholic men were significant. But the significance of these differences was a smaller magnitude than the significance of the differences between alcoholic and non- alcoholic women” (Hommer et al., 2001).

22 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH if and when awards are made to a These criticisms do not even touch research project, the funding mecha- upon the natural predisposition of nisms are set up to funnel funds people to endorse what they know through universities. Other institutions and understand and to advance and organizations are usually ex- what they are passionate about. cluded from the opportunity for Some notable attempts to include stewardship and control of research “lay” members in peer review panels funds. Since there is a vested interest have taken place, but an overhaul in maintaining control of research of the peer review system at large fund administration, these changes is required to support integrated are hard to achieve. research endeavours. Expanding the membership of review panels C. Peer Review to include experts who may not be Peer review processes have been scientists or academics has been and continue to be a point of conten- suggested, as well as increased tion in research circles. Devotion to flexibility in creating review panels a peer review model is deeply rooted for special competitions. Overall, the as the only way to ensure quality issue of how to accurately constitute control and excellence in research. panels of true peers to review propos- Most research granting bodies als in a transparent manner is critical exercise detailed peer review sys- to peer review reform. tems, often including internal and D. Journals and Reports external reviewers and laborious review discussions. These decisions There are significant opportunities can sometimes be hotly debated and to support integrated research via result in outcomes that will advance the products of the activity. For some research and researchers over example, journals and other publica- others. Criticisms of traditional peer tions could play a key role in promot- review include the narrowness of ing better research by asking for the peer review panels, the lack sex and gender to be considered of interdisciplinary knowledge, in all articles presented for review, the absence of “peers” for groups or asking the authors to justify why typically or previously excluded this is not possible. This will provide from receiving research grants, the vital information that affects future advantage of having had previously research plans, treatment and ser- funded research or the difficulties vice decisions, and increases the in advancing novel approaches or generalizability of knowledge. In this ideas. way, better quality and more useful

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 23 results can be conveyed to audi- ingly stressed in research, signalling ences. In addition, journals and a departure from the days of funding reports can focus on varied targets and doing research in isolation, such as policy, academic, commu- without a clear plan for knowledge nity, public or student audiences. uptake or exchange. Increasingly, This can include pointing editorials such plans are required at the outset toward the interests of these groups of the project and evidenced in the or deliberately using the report as a proposal stage. This is an important mechanism for building knowledge trend in integrated research, as it across and between audiences. identifies and respects different Finally, format and presentation can interests and realities, addresses count, transmitting different mes- the relevance of the research and sages in different media. Electronic its methodology and encourages the publishing, interactive websites and development of appropriate dissemi- CD-ROMs combine with traditional nation plans. formats to fill a wide variety of prefer- F. Cultural Shifts ences and learning styles. Short reports or abbreviations of key A key opportunity exists now for information can be useful for policy research cultures to change. This development, influencing decision opportunity is more real than ever makers and assisting community in Canada as research policy and groups in having an influence. guidelines have clearly embraced transformation as a goal of health E. Knowledge Uptake research via the establishing of the Knowledge uptake and management Canadian Institutes of Health Re- is a key consideration in the pursuit search. While some perceive change and development of integrated as both threatening and dangerous, research. Knowledge uptake ad- it can also be an opportunity for dresses the problem of making growth. Integrated research is such sure that the research results are an opportunity. Specific cultural delivered to people who can apply changes that academia may make them and utilize them to make a include training on partnership building difference. These destinations could and maintenance, recognition in the be the general public, policy makers, tenure and promotion system of this politicians, advocacy organizations, type of work and its products, and other researchers, clinicians or health bridge-building training opportunities planners and administrators, among for non-university based researchers. others. Knowledge uptake is increas- Changes are required in other sectors

24 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH as well. While community research- language and build stronger networks ers can offer insight and skill to other outside of the clinical realm. While partners in networking and identifying policy researchers can offer insight research agenda, research skill into policy research methods, policy training should be sought to build opportunities and dissemination and capacity for research in the commu- knowledge exchange routes that nity. Clinical researchers can offer would make a difference, they too the immediacy of their research could modify jargon and increase concerns and agendas and concrete relevance by demystifying their roles. situations for pursuing new research, All have something to offer, all have but also need to demystify their something needing change.

Women and Smoking

After decades of increased smoking among girls and women there is now rapidly emerging knowledge about the health effects on women or the gender differences regarding smoking practices and health effects. For example, women who smoke are twice as likely to get rheumatoid arthritis as non-smokers (“Smoking”, 2000), a link that is deemed complex and difficult to explain without further research, according to Kenneth Saag at the University of Alabama. Other effects of smoking include lung conditions. Emphysema may be misdiagnosed in women. According to the Surgeon General’s report on women and smoking, a study carried out by Dodge et al. found that “among subjects aged 40 or older with a new diagnosis of asthma, emphysema or chronic bronchitis based on self-report, women were more likely than men to receive a physician diagnosis of asthma or chronic bronchitis, and men were more likely to receive a diagnosis of emphysema” (US Department of Health and Human Services, 2001). The report further points out the need for further gender-based research. Clinical studies are divided as to whether or not women have lower cessation rates compared to men, but many studies have not reported sex-differentiated cessation results. The report also indicates biophychosocial factors that may specifically affect women with regard to smoking maintenance, cessation or relapse. These factors include pregnancy, weight gain, depression and the need for social support.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 25 Conclusion IX In summary, there is a vast opportunity for developing integrated health research in Canada, made more timely by the increasing funding to health research in the past two years. Just as important are the vastly increased opportunities for training of health researchers in Canada. This will allow new research approaches and perspectives, more methodological mixing and more interdisciplinarity to take root, ensuring a generation of change and transformation in how health research is carried out in Canada.

There is considerable public interest in this transformation of health research. As the public becomes more informed and more interested in taking charge of their health, and as the health care system in Canada is under accelerated scrutiny and reform, there is no doubt that the time is ripe for renewed and refreshed approaches to health research. Often, the media present research findings to the public and have played a key role in recent years in shaping consumer interest and demand, and bringing to light issues in need of reform in the health care system.

A key development over the past few years has been the increased attention paid to sex and gender differences in health and health re- search. It is true that more and more knowledge generation is occurring to fill in huge gaps regarding sex and gender differences in health. Despite resistance among scientists, the public understands readily that clearly identifying sex and gender differences in health research is better science. It is also clear that the public expects that this mea- sure will also lead to more appropriate treatments for all.

Finally, the development of more integrated research will increase the relevance of health research and the chance that relevant results find their way to people and places where they can be used to make a real difference in the lives of Canadians. This is the promise of integrated research.

26 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH The Fusion Model X A. Accomplishing Integrated Research

The participants at the Fusion symposium had an opportunity to critique a draft model of integrated research in light of discussions and presenta- tions. Several modifications were made following the Fusion sympo- sium, and the final model is presented on the inside back cover of this report as a moveable diagram. There are several rings in this model, and each of them can be manipulated to stimulate discussion in inte- grated research initiatives. This model can be used at a conceptual level to discuss approaches to research, or with research teams to actively design a research agenda, focus on a research question, work out a methodological approach or analyse and disseminate research results.

B. Assuring Relevance to Communities

The outer ring indicates the ultimate source of ideas for research, and the ultimate destination for research results. The various communities that are attached to a health research area or are affected by it need to be consulted as the research is developed. Is the approach relevant? Is the question comprehensive? What are the diversity issues between and within various communities? What input or participation is required to ensure relevance, appropriateness and successful dissemination?

C. Identifying the Entry Points for Researchers

The second ring indicates the four main pillars of health research as identified by the Canadian Institutes of Health Research (CIHR). This ring identifies the possible “entry points” for health researchers and reminds us to consider the research question or idea from each of these perspectives. This discussion also allows us to determine how to proceed and who to include in developing the proposal.

D. Integrating Sex and Gender into Health Research

This ring poses the standard and essential questions about sex and gender and assists in forming the research question. Is the health issue more serious, less understood, unique to, more prevalent or a higher

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 27 risk in females? Is the response of the paradigm being used and to the health issue or the pattern encourages interaction between of intervention different or gendered? paradigms when possible. This ring identifies knowledge gaps F. Adding Policy to the Discussion and reinforces the necessity of acknowledging sex and gender in This ring encourages the discussion health. to revisit the four traditional pillars of health research (as per the CIHR) E. Changing Paradigms to and to make sure that relevant Ensure Broader Thinking information from all four sectors is This ring suggests several para- included. The additional directive digms for discussion to ensure the from this ring is to engage with the broadest approach to the health policy issues related to the research. research issue. All of these para- What policy research questions digms are useful and need to be could be pursued or are affected by brought together to interact and this work? How does policy affect contribute to each other. Some the health status of the population? researchers see their work as part How could policy be affected by the of the fight against a disease, such research? as cancer or diabetes. Others will G. Operationalizing Integrated see the life cycle as their point of Research reference, using the developmental issues of childhood or old age as The next ring indicates the com- their frame. Some issues are con- ponents required for integrated ceived as risk behaviours, such research to be fully successful. as addiction or sexually transmitted Capacity building is critical to the diseases, while others are seen success of integrated research. through the lens of care or treatment This includes cross training on (access to care, quality of care, methodological approaches and efficacy of treatments). The environ- multi-, inter- and transdisciplinarity. ments in which people exist have a It also means developing meaningful huge influence on their health and partnerships that are truly collabora- require research. Finally, the inequal- tive and as equal as possible. This ity of health between groups and ring is essential to determining how within groups is a key paradigm to best mount the project and what for understanding how to frame parts of the team or process need research questions and analyse development. results. This ring allows identification

28 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH H. Ensuring Knowledge be created to feed the new knowl- Exchange and Return edge back to the stakeholders and, ultimately, the communities? Finally, central to successful operationalization is effective knowl- edge exchange. How is the knowl- edge going to be disseminated and how is uptake going to be ensured? What mechanisms exist or need to

Women and Schizophrenia Treatment

Guidelines for the treatment of schizophrenia do not take into consid- eration sex and gender differences, even though they play a large part in accurate diagnosis, appropriate treatment and even prevention. Dr. Barbara Dorian, chair of the 2000 Women and Psychosis Confer- ence at the University of Toronto and the Centre for Addiction and Mental Health identified factors that influence clinicians’ gendered approaches to women with illnesses such as schizophrenia. She described the issues surrounding women and schizophrenia, such as patients’ vulnerability in society, economic poverty, victimization and high suicide rates. Dr. Elaine Walker has researched what is known about sex differences to help prevent the onset of schizophre- nia. Research on adolescents with schizotypal personality disorder shows sex differences with regard to attention, thinking and social problems. The hope is to develop a gendered approach in recognizing and intervening with the adolescent behaviours that may foretell of more serious psychotic problems in adulthood (Seeman, 2000). Dr. Jeffrey Lieberman has investigated sex and gender differences in schizophrenia and the importance of such differences in the develop- ment of optimal treatment strategies. Issues such as earlier onset in men, better treatment response in women, better premorbid function in women, shorter prodome in women, and more adverse effects of antipsychotic drugs in women have clear clinical implications.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 29 XI Integrated Research Program: Examples Following are four illustrations of applying the Fusion model to health research questions that were discussed at the Fusion symposium. They are described using the four pillars of research as entry points, starting with an example that would traditionally be considered primarily by one sector and then expanding the scope of the question and seeking links.

A. Biomedical: Development and Use of Artificial Hemoglobin

The case of artificial hemoglobin started out as a biomedical example and was developed to inspire an integrated program of research. At first glance, the area of transfusion medicine and artificial blood products seems gender-neutral and limited to a biomedical perspective, but there are significant gendered and sex differences for women in the area of transfusion medicine. It is known that women are at higher risk earlier in life of being exposed to the risks of blood transfusions due to preg- nancy-related complications. The consequences of becoming immu- nized to red blood cell and other antigens are significantly greater for women because of the risks of subsequent haemolytic disease of the newborn. Furthermore, women who have been pregnant are often at a disadvantage in the course of treatment for cancer due to resistance to platelet transfusions because of antibodies. Furthermore, when women are infected with transmissible diseases through blood transfusion, they then have to deal with issues of transmission to a fetus.

However a series of questions was raised about blood and artificial haemoglobin that involve broader approaches, the integration of sex and gender, and the other pillars of research. Following are selected examples of the range of questions raised.

Basic Biomedical: The potential use of standard transfusion products in pregnancy carry risks related to vertical transmission and alloimmunization – what are the risks and benefits regarding these issues with the use of artificial hemoglobin?

Applied Clinical: Due to their lower iron status throughout life, and their smaller blood volume, are women in general at higher risk for

30 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH transfusions and thus transfusion- B. Applied Clinical: Women related complications? What impact and Heart Transplantation would artificial hemoglobin have on Women and heart transplantation is this? an example of an issue that has an Health Services and Systems: obvious clinical entry point into the What are the costs and disease model, but which also raises a wide burdens for those who can not range of sociocultural and policy afford artificial hemoglobin, espe- issues. The majority of heart trans- cially in developing countries? Given plant recipients (80-90%) are male the differing social status of women and are most often cared for by and issues related to their access female spouses or family members. to care in some parts of the world, According to Lynne Young, “the what would be the gendered issues technical aspect of this procedure, related to the use of a more expen- and the related personal experi- sive transfusion product in men and ences, are deeply embedded in a women? Are there any gendered framework of social structures at issues to be considered regarding macro-, meso-, and micro-levels of blood donor behaviour and the Canadian society: government policy, impact on supplies of platelets and health care delivery systems, health other factors with increased avail- care relationships, and families of ability and awareness about artificial transplant donors and recipients” hemoglobin? (2000). Some questions that arose when applying the integrated model Social and Cultural Dimensions: to the issue of heart transplantation What are the issues of acceptability were: of artificial blood transfusions compared to real blood? What are Basic Biomedical: What are the sex the differences across women and and gender differences in cardiovas- men in different population groups cular pathophysiologies and heart in accepting artificial hemoglobin? transplant rejection?

Policy: Who will have access to Applied Clinical: Is there any limited supplies of artificial hemoglo- difference in the effectiveness of bin? How will it be determined? immunosuppressant therapy among Who will pay for it? What legal women and men following heart issues arise in determining policy transplantation? (Young, 2000) regarding artificial hemoglobin? Health Services and Systems: Why is the majority of heart transplantation

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 31 done on men? Why are women informal (home) settings? The major- invisible in many studies? Why ity of care providers are women, are women less well represented especially in the informal sector, as physician providers (i.e., heart and dependents may be children transplant surgeons) in this area or other family members. As women of medicine? How do we effectively tend to outlive men, the dependents measure women’s caregiving work are in many cases their male rela- in heart transplantation, both infor- tives or spouses. Economically, mal and formal? women, especially older women, may have fewer resources and Social and Cultural Dimensions: difficulty in accessing care. What social policies are needed to balance and recognize women’s Basic Biomedical: How does roles in heart transplantation as caregiving contribute to the phys- both recipients and caregivers? iology of the stress response and interact with sex differences and Policy: What are the implications gendered factors? of introducing equity considerations into donor and transplantation Applied Clinical: How does the policies? burden of caregiving affect the caregiver’s own medical care? C. Health Services and How do caregivers’ health status, Systems: Homecare stress and injury levels compare Homecare is a health services to women who are not caregivers? and systems issue that has broad Health Services and Systems: implications for women in their How does the public health care multiple roles as health workers, system coordinate, train and support caregivers and consumers. Health both formal and informal caregivers? care reform, with its emphasis on What are the costs of shifting care transferring the care setting from from institutions to community and the hospital to the home, raises home settings? questions such as: Who does the work of care giving? Who pays for Social and Cultural Dimensions: the care? What are the personal How does gender socialization economic and psychosocial costs impact on the adoption of caregiving of caregiving? Are these costs roles? How do different cultural gendered? To what extent are groups address caregiving? How various health care services inte- does ability level and age affect grated both in formal (hospital) and the nature of caregiving networks?

32 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Policy: How can policy shifts com- promotion and treatment of other pensate or ameliorate the health and clinical issues (i.e., alcohol use, economic effects of caregiving on reproductive health or obesity) be women? integrated to control diabetes? How is self care and dietary management D. Social and Cultural Dimen- education made suitable and effec- sions: Diabetes and Aboriginal tive for women and men? Women Health Services and Systems: How Aboriginal peoples in Canada are gender, geographic location and experience poor health status as access to care issues in preventing a group. This manifests in higher and controlling diabetes? prevalence of several diseases and conditions. One of these is diabetes. Social and Cultural Dimensions: The social and cultural dimensions How do women serve as models of the prevention, prevalence and for diet and eating behaviours in treatment of diabetes provided the aboriginal families? How has the starting point for the discussion. A media contributed to shifts in aborigi- dramatic shift in aboriginal health in nal dietary habits? How does cultural Canada has occurred in the post- loss contribute to the social determi- colonial time period. This change nants affecting the prevalence of has been accompanied by a cultural diabetes? loss of control and autonomy. Risk Policy: How do policies shifting factors including alcohol, smoking, control of health services to abor- inactivity and shifts in diet are iginal communities improve the aspects of this cultural shift. prevention and treatment of diabetes? Basic Biomedical: What are the How can the research process and biological implications of dietary related policy be affected by aborigi- shifts from pre-colonial times? How nal involvement? does genetics play a role in predis- posing aboriginal women and men to diabetes? How do high fertility rates expose aboriginal women to more gestational diabetes, and at what age?

Applied Clinical: How is treatment best made culturally appropriate and gender-sensitive? How could health

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 33 Appendix 1: The Steering Committee for the Project Women’s Health in the Canadian Institutes of Health Research

Project Leader

Penny Ballem, MD, FRCP Vice-President Women’s and Family Health Programs, Children’s & Women’s Health Centre of British Columbia Associate Professor of Medicine University of British Columbia

National Steering Committee

Sharon Buehler, PhD Associate Professor Lorraine Greaves, PhD School of Medicine, Memorial University Executive Director of Newfoundland British Columbia Centre of Excellence for Women’s Health Joan Bottorff, PhD Clinical Associate Professor Associate Professor Health Care and Epidemiology, School of Nursing, University of British Faculty of Medicine, University Columbia of British Columbia

May Cohen, MD Arminée Kazanjian, PhD Professor Associate Director Department of Family Medicine, Centre for Health Services and McMaster University Policy Research Associate Professor Anna Day, MD, FRCP Faculty of Medicine, University Associate Professor of British Columbia Departments of Medicine and Health Administration, University of Toronto Michael Klein, MD, FRCP Consultant Director Women’s Health, Sunnybrook & Family Health Programs, Children’s Women’s College Health Sciences & Women’s Health Centre of Centre British Columbia Head Dawn Fowler, MA, MUP Department of Family Practice, Consultant Children’s & Women’s Health Health Information, Iqaluit Centre of British Columbia

34 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Yvonne Lefebvre, PhD Vice-President of Research University of Ottawa Vice-President of Academic Research Ottawa General Hospital Professor Department of Medicine and Department of Biochemistry, University of Ottawa Senior Scientist Loeb Health Research Institute

Diane Ponee,‘ MSW Director Women’s Health Bureau, Health Canada

Donna Stewart, MD, FRCP, D. Psych. Chair Women’s Health, Toronto Hospital Professor Faculty of Medicine, University of Toronto

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 35 Appendix 2: The Working Group on Gender and Women’s Health in the CIHR

Co-Chair Penny Ballem, M.D. Madeline Boscoe Vice-President Executive Coordinator Women’s and Family Health Canadian Women’s Health Network, Programs, Children’s & Women’s Winnipeg Health Centre of British Columbia Nadya Burton, PhD Co-Chair Community Director Karen Grant, PhD National Network on Environments Associate Dean (Research) and Women’s Health Faculty of Arts, University of Manitoba Donna Chow, PhD Associate Professor Associate Professor Department of Sociology, Department of Immunology, University of Manitoba Faculty of Medicine, Chair University of Manitoba Executive Committee, Board Member National Network on Environments Women’s Health Research and Women’s Health Foundation of Canada Inc.

Carol Amaratunga, PhD Anna Day, M.D. Associate Professor (Research) Consultant Dalhousie University Women’s Health, Executive Director Sunnybrook and Women’s College Maritime Centre of Excellence Health Sciences Centre for Women’s Health Maria De Koninck, PhD Pat Armstrong, PhD Professor National Network on Environments Département de médecine and Women’s Health sociale et préventive, Université Laval, Robin Barnett, B.A. Sainte-Foy, Québec Chair Board of Directors, Linda DuBick, M.A. Canadian Women’s Health Network, Director Vancouver Prairie Women’s Health Centre of Excellence Sharon Batt, M.A. Nancy’s Chair Gina Feldberg, PhD Women’s Studies, Academic Director Mount St. Vincent University National Network on Environments and Women’s Health

36 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Anne Rochon Ford, B.A. Katherine Macnaughton-Osler Working Group on Women Community Co-director and Health Protection Centre d’excellence pour la santé des femmes, Lorraine Greaves, PhD Université de Montréal Executive Director British Columbia Centre of Janet Maher, PhD Excellence for Women’s Health Community Relations Officer Centre for Research in Women’s Health, Olena Hankivsky, PhD University of Toronto Research Associate British Columbia Centre Marika Morris, M.A. of Excellence for Women’s Health Research Coordinator Sessional Lecturer Canadian Research Institute Department of Political Science, for the Advancement of Women University of British Columbia Karen Messing, PhD Arminée Kazanjian, PhD Director Associate Director Graduate Programme in Ergonomic Centre for Health Services Intervention and Policy Research Professor Associate Professor Department of Biological Sciences, Faculty of Medicine, Université du Québec à Montréal University of British Columbia Linda Murphy Yvonne Lefebvre, PhD Manager Vice-President of Research Research Programs, University of Ottawa Canadian Health Services Research Vice-President of Academic Research Foundation, Ottawa General Hospital Ottawa Professor Department of Medicine and Health Canada Liaison Department of Biochemistry, Diane Ponée, MSW University of Ottawa Director Women’s Health Bureau, Abby Lippman, PhD Health Canada Professor Department of Epidemiology Health Canada Liaison and Biostatistics, Lynne Dee Sproule, M.Ed. McGill University Manager Centres of Excellence for Women’s Rhonda Love, PhD Health Program, Department of Public Health Sciences, Women’s Health Bureau, University of Toronto Health Canada

Heather Maclean, PhD Donna Stewart, M.D. Director Chair in Women’s Health Centre for Research in Women’s Toronto Hospital Health, Professor University of Toronto Faculty of Medicine, University of Toronto

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 37 Bilkis Vissandjée, PhD Associate Professor School of Nursing, Université de Montréal Academic Co-Director Centre d’excellence pour la santé des femmes, Université de Montréal

38 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Appendix 3: Fusion: A Symposium on Integrated Research – Speaker and Participant List

Farah Ahmad Elaine Carty University of Toronto University of British Columbia

Carol Amaratunga Donna Chow Executive Director Associate Professor Maritime Centre of Excellence for Faculty of Medicine, Women’s Health University of Manitoba

Penny Ballem Jan Christilaw Vice-President Obstetrician/Gynecologist Women’s and Family Health Programs, Children’s & Women’s Barbara Clifton Health Centre of British Columbia Native Women’s Association of Canada Lynn Beattie Vancouver General Hospital May Cohen Professor Emeritus Madeline Boscoe Faculty of Health Sciences, Executive Coordinator McMaster University Canadian Women’s Health Network Anna Day Joan Bottorff Sunnybrook and Women’s College University of British Columbia Health Sciences Centre

Sharon Buehler Janice Du Mont Professor Centre for Research in Women’s Memorial University of Health Newfoundland Michelle Dupuy-Godin Mary Bunch Centre d’excellence pour la santé York University des femmes

Jill Cameron Erica Eason University Health Network, Assistant Professor University of Toronto Ottawa Hospital, General Campus

Pat Campbell Connie J. Eaves Senior Vice President Deputy Director Women’s College Campus, Terry Fox Lab, B.C. Cancer Sunnybrook and Women’s Hospital Research Centre

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 39 Susan Edmonds Marcia Hills Maritime Centre of Excellence MAC Chair for Women’s Health University of Victoria/Minister’s Advisory Council on Women’s Health Josephine Enang IWK Grace Health Centre Ilene Hyman Research Scientist Marsha Forrest Culture, Community and Member Health Studies – Clarke Division Board of Directors, Aboriginal Nurses Association of Canada Maria Issa University of British Columbia Dawn Fowler Manager Joy Johnson Health Information and Research, University of British Columbia Government of Nunavut Moira Kapral Renee-Louise Franche University Health Network, University Health Network, University of Toronto University of Toronto , Arminee Kazanjian Wendy Frisby Associate Professor University of British Columbia University of British Columbia

Karen Grant Sandra Kirby Associate Dean Associate Professor University of Manitoba University of Winnipeg

Lorraine Greaves Susan Kirkland Executive Director Graduate Program Coordinator British Columbia Centre Dalhousie University of Excellence for Women’s Health Jude Kornelsen Kathy Greenberg Research Associate Children’s & Women’s Health British Columbia Centre Centre of British Columbia of Excellence for Women’s Health

Olena Hankivsky Christine Korol Research Associate University of British Columbia British Columbia Centre of Excellence for Women’s Health Agnieszka (Iggy) Kosny Acting Community Director Sue Harris National Network on Environments Children’s & Women’s and Women’s Health Health Centre of British Columbia Yvonne Lefebvre Effie Henry Vice-Dean Acting Director Research Faculty of Medicine, British Columbia Ministry of Health University of Ottawa

40 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Peggy McDonough Health Program, Women’s Health Bureau, Department of Sociology, Health Canada York University Mary Stephenson Heather McKay Children’s & Women’s Health University of British Columbia Centre of British Columbia

Lynn Meadows Donna Stewart University of Calgary Professor and Chair Women’s Health, University Health Anne-Marie Mes-Masson Network, University of Toronto Hopital> Notre-Dame W. E. Thurston Marina Morrow Director Research Associate Office of Gender and Equity Issues, British Columbia Centre Department of Community Health Science of Excellence for Women’s Health Aubrey Tingle Nancy Poole Executive Director Researcher British Columbia Research Institute Children’s & Women’s for Children’s and Women’s Health Health Centre of British Columbia Barbara Vanderhyden Jerilynn Prior Ontario Cancer Research Centre Professor University of British Columbia Bilkis Vissandjée Codirectrice Isabelle Savoie Centre d’excellence pour Research Associate la santé des femmes University of British Columbia Barbara Wiktorowicz Tracee Schmidt Chair of the Board Senior Policy Analyst Prairie Women’s Health Centre British Columbia Ministry of Health of Excellence

Dorothy Shaw Doug Wilson Associate Medical Director Head Children’s & Women’s Health Children’s & Women’s Health Centre of British Columbia Centre of British Columbia

Susan Sherwin Christel Woodward Undergraduate Co-ordinator Professor Women’s Studies, Dalhousie University Department of Epidemiology, McMaster University Leslie Spillett University of Winnipeg Hans H. Zingg Director Lynne Dee Sproule Department of Medicine, Manager McGill University Centres of Excellence for Women’s

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 41 42 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 43 44 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Endnotes 1 The CIHR Act describes the four pillars of research that are to cut across the work of all the Institutes: basic biomedical; health systems and health services; clinical research; and social, cultural and environ- mental influences on health and the health of populations.

2 Multidisciplinary research is articulated as the goal of the CIHR in the Final Report of the Interim Governing Council (2000). However, interdis- ciplinary research is argued to be superior to multidisciplinary research by Grant, Prior and Stewart (2000), as it denotes interaction between disciplines that is meaningful and additive, as opposed to simply having different disciplines work in parallel on the same issue.

3 For example, the Centres of Excellence for Women’s Health Program funded by Health Canada is premised on community-academic-policy partnership models. The CURA program of the Social Sciences and Humanities Research Council is another example.

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 45 References Ballem, P. (2000, April). Overview of workshop goals. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Sympo- sium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Research Opportu- nity Program, Vancouver, Canada.

Ballem, P., & Greaves, L. (2000, April). Closing remarks. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Symposium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Research Opportu- nity Program, Vancouver, Canada.

Ballem, P., & Greaves, L. (2000, April). Opening remarks. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Symposium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Research Opportu- nity Program, Vancouver, Canada.

Bottorff, J., & Greaves, L. (2000, April). Towards collaborative working models of integrative research. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Symposium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Research Opportunity Program, Vancouver, Canada.

Bottorff, J., Burgess, M., & Kim-Sing, C. (2000, April). Panel discussion: Vancouver Hereditary Cancer Team – An evolving program of integra- tive research. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Symposium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Research Opportunity Program, Vancouver, Canada.

46 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH Canadian Institutes of Health Re- system. CHEST, 114 Suppl., 339. search: Interim Governing Council Day, A., Kirkland, S., & Grant, K. Sub-Committee on Partnerships and (2000, April). Synthesis of research Commercialization. (1999, Septem- program/model: Development group ber). Working paper. Ottawa, work and discussion. In P. Ballem, & Canada: Author. L. Greaves (Chair), Fusion: A sym- Canadian Institutes of Health Re- posium on integrated research. search. (2000, June). Where health Symposium sponsored by the British research meets the future: The final Columbia Centre of Excellence for report of the Interim Governing Women’s Health, BC Women’s Council of the Canadian Institutes of Hospital and Health Centre, & Health Research. Ottawa, Canada: Medical Research Council – Cana- Author. dian Institutes of Health Research Opportunity Program, Vancouver, Canadian Research Institute for the Canada. Advancement of Women. (1996, December). Research partnerships: Fowler, D. (2000, April). Next steps A feminist approach to communities and discussion. In P. Ballem, & L. and universities working together. Greaves (Chair), Fusion: A sympo- Ottawa, Canada: Author. sium on integrated research. Sympo- sium sponsored by the British Carty, E., Kornelsen, J., & Janssen, Columbia Centre of Excellence for P. (2000, April). Panel discussion: Women’s Health, BC Women’s Implementing midwifery – An evolv- Hospital and Health Centre, & ing program of integrative research. Medical Research Council – Cana- In P. Ballem, & L. Greaves (Chair), dian Institutes of Health Research Fusion: A symposium on integrated Opportunity Program, Vancouver, research. Symposium sponsored by Canada. the British Columbia Centre of Excellence for Women’s Health, BC Grant, K., Prior, J., & Stewart, D. Women’s Hospital and Health (2000, April). Panel discussion: Centre, & Medical Research Council Challenges and opportunities of – Canadian Institutes of Health integrative research. In P. Ballem, & L. Research Opportunity Program, Greaves (Chair), Fusion: A sympo- Vancouver, Canada. sium on integrated research. Sympo- sium sponsored by the British Day, A. (1998). Gender disparities in Columbia Centre of Excellence for asthma admission rates are not Women’s Health, BC Women’s improved in a universal health care Hospital and Health Centre, &

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48 BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH among adults presenting to the Vidaver, R.M., LaFleur, B., Tong, C., emergency department with acute Bradshaw, R., & Marts, S.A. (2000). asthma [abstract]. Archives of Women subjects in NIH-funded Internal Medicine, 159, 1237. clinical research literature: Lack of progress in both representation and Smoking may increase risk of analysis by sex. J Womens Health developing rheumatoid arthritis. Gend Based Med, 9, 495. [Online press release]. (2000, October 29). Available URL: http:// Young, L.E. (2000, May). Women and www.rheumatology.org/: http:// heart transplantation: A social justice www.rheumatology.org/press/ issue? Abstract from a poster ses- am2000/smoking.htm sion presented at the First Interna- tional Conference on Women, Heart Stephenson, M., Amaratunga, C., & Disease and Stroke: Science and Kosny, A. (2000, April). Panel discus- Policy in Action in Victoria, Canada. sion: Partnerships – Perils and potential. In P. Ballem, & L. Greaves (Chair), Fusion: A symposium on integrated research. Symposium sponsored by the British Columbia Centre of Excellence for Women’s Health, BC Women’s Hospital and Health Centre, & Medical Research Council – Canadian Institutes of Health Reserach Opportunity Program, Vancouver, Canada.

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