for women’s health

Women’s Health Reports

Copyright © 2001 by BritishColumbia Centre of Excellencefor Women’s Health

All rights reserved. No part ofthis report may be reproducedby any means without the writtenpermission of of the publisher,except by a reviewer, who mayuse brief excerpts in a review.

ISSN 1481-7268ISBN 1-894356-43-8

Executive Editor Lorraine Greaves

Copy Editor Robyn Fadden

Graphic Design Michelle Sotto& lllustration

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British ColumbiaCentre of Excellencefor Women’s Health

Centre d’excellence de laColumbie-Britanniquepour la santé des femmes

Canadian Cataloguingin Publication Data

Greaves, LorraineFusion : a model for integrated health research

(Women’s health reports, ISSN 1481-7268)Papers from Fusion : a Symposium on IntegratedResearch held April 26-28, 2000 in Vancouver, B.C.Includes bibliographical references.

1. Women—Health and hygiene—Research—Canada—Congresses. 2. Medicine—Research—Canada—Congresses. I. Ballem, Penny. II. BC Centreof Excellence for Women’s Health. III. Symposium onIntegrated Research (2000 : Vancouver, B.C.) IV. Title.V. Series: Women’s health reports (Vancouver, B.C.).

RA564.85.G73 2001613'.04244’072071C2001-911441-9

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

FUSION: A MODEL FOR INTEGRATED HEALTH RESEARCH 1

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 healthresearch in Canada. The report captures some preliminary themeson integrated health research, as well as aspects of the work embeddedin the following projects, groups and events.

The Steering Committee for the project Women’s Health in theCanadian Institutes of Health Research funded by the MedicalResearch Council of Canada (MRC)(Appendix 1), chaired by PennyBallem (Children’s & Women’s Health Centre of British Columbia),devoted many hours to building a consortium and planning a nationalmeeting, coordinated by Kathleen Whipp, to develop a research agendafor 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-fundedproject to develop the agenda and elements of the national meeting.The group’s co-chairs were Penny Ballem and Karen Grant (Universityof 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 Fusionmodel after consultations with the Steering Committee for the MRCproject. 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). Itscurrent iteration is the result of processes of discussion and modificationduring and since Fusion: A Symposium on Integrated Research, a two-day event held in Vancouver in April 2000.

Acknowledgments

BRITISH COLUMBIA CENTRE OF EXCELLENCE FOR WOMEN’S HEALTH2

The speakers and attendees atFusion: A Symposium on Inte-grated Research (Appendix 3)offered comments on an early draftof the Fusion model, and partici-pated in discussion around all of thethemes addressed in the agenda(Appendix 4).

The entire team at the BCCEWHcarried out coordination, support andprocess reporting for the Fusionsymposium. Teresa Yun Hee Leeserved as an excellent researchassistant. She collated and reviewedthe tapes, processed notes andexamples brought forward from theFusion symposium, and providedpreliminary drafts of several illustra-tive sections in this report.

Finally, we gratefully acknowledgethe following funders for their gener-ous support. The Medical ResearchCouncil of Canada, BritishColumbia’s Women’s Hospitaland Health Centre, the Women’sHealth Bureau of Health Canadaand the British Columbia Centreof Excellence for Women’s Health.


I About This Report

Fusion: A Model for Integrated Health Research is the third in aseries of documents published by the British Columbia Centre ofExcellence for Women’s Health, and represents the thinking of variousconstellations of women’s health researchers in Canada. The develop-ment of the Canadian Institutes of Health Research (CIHR) in June2000, 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 ongender and women’s health research and on mechanisms for address-ing sex and gender in health research. It outlined the logic of variousapproaches and concluded that a separate Institute on Women’s HealthResearch was in the best interests of Canadians to generate specificand needed knowledge on women’s health. This project was supportedby the Social Sciences and Humanities Research Council and theCanadian Health Services Research Foundation, and was a keycontribution to the debate surrounding the design of the CIHR and itsInstitutes.

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

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


This report, Fusion: A Model forIntegrated Health Research,addresses the processes of doingresearch in an increasingly complexand demanding environment. Keyto its goal is to articulate howintegrated health research can becarried out effectively, enhancingthe best aspects of interdisciplinaryapproaches. It proposes a model toguide every aspect of the researchprocess from generating a researchquestion to knowledge uptake. Theelements of the Fusion model arepresented here in a working, mov-able diagram that will serve as aguide to integrated research devel-opment in any area of research.


Canadian health research has been affected by several importanttrends over the past few years. Multidisciplinary and interdisciplinaryresearch is more often encouraged, and collaboration betweenresearchers in innovative partnerships is a key element of suchan approach. At the same time, health research is increasinglycommercialized, with the introduction of strong funding partnersfrom the private sector. In the context of ongoing health reform, theCanadian health care system is seeking more and better evidence onwhich to base decision-making. And finally, an aging and aware popula-tion is demanding more direct access to details about research findingsconnected to health concerns.

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

While funding for health research in Canada has historically beenlimited, the introduction of the Canadian Institutes of Health Research(CIHR) by the federal government in 2000 heralds a new era in theorganization and funding of health research in Canada. The metamor-phosis of the Medical Research Council into the CIHR with a muchwider mandate of research has just begun. In addition, the projectedincreases in federal funding for the CIHR over the next few yearsare significant and will have a direct impact on the amount of healthresearch undertaken. In this context, there is increased attention beingpaid to the structures and processes supporting health research inCanada.

II General Trends in Research


Elements of the long-term mandate of the CIHR include the integrationand transformation of health research in Canada. This is understood tomean that many disciplines and areas of research will have a place ineach of the four pillars1 of the CIHR structure, and that these pillars, inturn, will cut across the work of the Institutes. It is expected that thisnew structure will both encourage and demand new partnerships andapproaches between disciplines and sectors. Further, the introductionof 13 Institutes to manage and govern this expanded agenda will havedual goals: to pursue knowledge generation in the Institute’s area ofspecialization and to integrate its issues when appropriate with theother Institutes. The sum total of these mandates will, it is hoped, leadto transformation.

Transformation is hard to define, but early discussions at the InterimGoverning Council (IGC) of the CIHR indicated that transformationwill have occurred when health research is produced out of this newsynergy that exhibits momentum, signifies breakthroughs and capturesa more comprehensive understanding of health phenomena. In manyways, this will have arrived when disciplines, research teams andInstitutes will no longer be conceptualizing and doing research in isola-tion, but rather will be acutely aware of, and linked to, researchers inother 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 resultswill have multi-faceted and truly interdisciplinary2 elements. In addition,the current attribution of higher status and importance to biomedicalresearch over other types will be lessened, and a more complete androbust understanding of health will be fed by a wider and broader per-spective. Ultimately, the health of Canadian women and men shouldbe directly improved in measurable ways.

III Integrated Research in the CIHR Context


The theme of transformation underpins this document, which describesthe development of an integrated approach to doing health research.An integrated approach takes into consideration the “what, who andhow?” of health research, and contextualizes these questions in thehealth 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 processesof research (how?) are all crucial sites of debate, tension, vestedinterests and competition. It is also acknowledged that these researchstructures and processes live in an often politicized, ideological context.

The production of health knowledge, like any other kind, is fraughtwith the pressures of power, influence and vested interests. To ignorethese elements in our discussion of integrating health research wouldbe missing an important step. Nonetheless, the promise of integratedresearch 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.

IV Integrated Approach to Research

Women and Cardiovascular Disease

Cardiovascular disease has a history of being frequently misdiag-nosed in women because for many years it has been considered aman’s disease and the nuances of how women experience cardiacpain 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 modelfor cardiovascular disease, both in diagnosis and treatment. She notesthat contrary to myth, more women than men in the U.S. die of heartdisease 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.


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

The tradition of women’s health research in Canada has been builtupon the key elements of integration: partnerships, interdisciplinarity,mixed methodology, reflexivity, and relevant knowledge productionand policy uptake. Primary to this approach has been research estab-lished in a feminist tradition, with clear and conscious acknowledgementthat the reality of women’s lives forms the backdrop for the researchprocess, and informs the research agenda. The ancient methods ofethnography and narrative building have been underlying elementsof women’s health research, in conjunction with newer statistical andquantitative approaches. A modern emphasis on action research hasled to policy uptake and concrete change as a result of the researchprocess.

Struggles with partnership development date back more than twodecades, and offer a rich history of the issues and solutions in buildingalliances that are equal and productive. Developing such partnershipsoffers a relevant source of research topics, and important access topeople, perspectives, information and analysis. A strong and consumer-based women’s health movement has grown in Canada since the late1970s, interacting with researchers from a critical standpoint and culti-vating an audience for relevant research results.

V Women’s Health Research: A Modelfor Integrated Research


There are crucial gendered differences in experiencing health andillness, in receiving and giving treatment and intervention, and in inter-preting experiences that enhance or reduce health. There are criticaldifferences in accessing the health care system, managing healthcare, working in health care and giving care at home or elsewhere.Taken together, a consistent and conscious accrual of knowledgeabout sex and gender differences will directly benefit the health ofboth men and women in Canada.

It is impossible to fully understand the impact of this without fully inte-grated health research. It is crucial to involve all four pillars of researchand to consciously develop interdisciplinarity and the use of mixedmethodologies. In this way, integrated research that sensitively inte-grates both sex and gender will contribute to better science.

The logic and benefit of addressing sex, gender and women’s healthin a full program of health research is simple but not widely understood.In addition to gendered differences, there are critical and under-re-searched sex differences that affect health, the course, nature andprevalence of disease, treatment and intervention success, and thedevelopment of research questions. Such sex differences go wellbeyond issues related to reproductivity. Recent research has revealedrapidly increasing discoveries of sex differences across the body andmind that were heretofore unknown. While such new discoveries arealways exciting, their emergence serves to repeatedly highlight howmuch we do not know about the health of women and men.

Women’s health research is a prime example of integrated researchin action, and a lively site for developing research techniques andprocesses that create meaningful and relevant knowledge. Askingquestions about sex and gender differences, and using many differentdisciplinary lenses at once, are fundamental starting points for anyhealth research on the human organism. Failure to do so is simplybad science.

VI Sex, Gender and Women’s Health

Examples ofrecent findingsillustrating theimportance ofsex and genderin health researchare provided inthe grey boxesthroughout thisreport.


There are many challenges in doing integrated research. A fundamentalissue facing many researchers and their leaders is the lack of trainingin the many approaches to successful collaboration and inter-disciplinarity. While increasing calls for integration are heard, mostacademic researchers have had little or no exposure to the processesand thinking patterns required to make integrated research happen.Several aspects of integration present challenges such as partnershipand capacity building, power sharing, dealing with different perspectives,vested interests, funding rules and territoriality. In addition, professionalboundaries and identities sustained by professional education andtraining 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, independentscholars, or community-based researchers. They may be policyresearchers 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 whichresearch collaborators define themselves and their experiences. Ideolo-gies affect all the players in the collaborative processes who arerequired to carry out interdisciplinary, integrated research. Pursuingbias-free science or value-free research is impossible, despite thebest intentions of researchers and funding agencies. While certainresearch 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 andvalues. Hence, all approaches can be termed “political” in this sense.

VII The Current Issues: Challengesto Integrated Research


A. Defining Partnerships

One of the key debates at theFusion symposium surroundedthe definition of partnerships andthe issues surrounding them, suchas the sharing, ownership anddissemination of information. Theidea of partnership research iswidely supported, but often leftvaguely defined. On one end ofthe continuum, partnership betweenacademia and community is oftenthe assumed standard. On theother end, partnership meansfunding arrangements as a resultof industry and academic agree-ments.

In the former, commercializationhas little or no place in the idea ofpartnership, but in the latter, com-mercialization is often a key param-eter. In the former, there are manyreasons for partnering that arebased on relevance, capacitybuilding and the desire for differentperspectives. In the latter, thereare efficiencies, knowledge break-throughs, additive funding formulaeand commercial applications.

For much partnered research, thereality is in between. In addition toacademics and community groupsthere are many other players inhealth research. Policy researchers,policy makers, health systemadministrators, health care unionsand consumer advocates, consult-

ants and students all contribute tomulti-sectoral research partnerships.All of these stakeholders are slowlygaining a place at the research tablein Canada, but not without struggle.

Partnerships have been lauded bymany key research funders, suchas the CIHR. In its working paperon partnership and commercializa-tion (1999), it is stated that “partner-ship should be the essence of CIHR.”However, in that document andothers, there is a significant empha-sis on partnerships with the privatesector. As Grant, Prior and Stewart(2000) point out, there are severalsuccessful models 3 of academic-community and policy researchpartnerships in Canada that serveas key examples of alternatives oradditions to partnerships with theprivate sector.

B. Creating AuthenticPartnerships

The quality of research partnershipshas also come under scrutiny. Someof the issues in building authenticpartnerships have to do with trans-parency, power sharing and degreeof involvement. As the CanadianResearch Institute for the Advance-ment of Women (CRIAW) points out,there are differences between apartnership in name only and a truecollaboration. One of the conclusionsin their report, Research Partner-ships: A Feminist Approach to Com-


munities and Universities WorkingTogether (1996), states “partner-ships that are required as a condi-tion of funding are not conducive toreal collaboration.” CRIAW stressesthat while “funders use the languageof partnership…[they] do not providethe resources necessary to take thetime to develop a truly egalitarian,respectful process,” noting theimportance of a common vision anda balance of power.

The issues of partners co-fundingresearch raises other challenges.The CIHR takes an all-encompass-ing view including as potentialresearch partners governmentagencies/departments, the educa-tional sector, non-profit agencies, as

well as the private sector. The caveatis that “while welcoming industrialpartnerships, CIHR should ensurethat its research priorities are set atarm’s length from commercial con-cerns” (Canadian Institutes of HealthResearch, 1999, p.11). Not only docommercial partnerships raise thespectre of conflicts of interest andpotential research process control,but they also raise complex issuesof intellectual property rights andpublication limits.

In short, partnerships are now highlyregarded, sought after, and often akey aspect of funding approval.However, the challenges to makethem authentic, meaningful, ethicaland uncompromised are yet to be

Women and Asthma

Asthma is another example of a disease that suggests the importanceof taking into consideration sex differences. Over the past decadeevidence has been mounting slowly to suggest that asthma affectswomen differently from and more severely than men. A 1998 studyby Dr. Anna Day revealed that women were three times more likelythan men to be hospitalized for asthma between 1985 and 1995. A1999 study published in the Archives of Internal Medicine (Singhet al., 1999) showed that women are more likely to be hospitalizedfor asthma than are men. The study examined emergency departmentvisits for acute asthma and reported that 64.3% were women. Inaddition, women were 1.5 times more likely to report an ongoingexacerbation. Anna Day of Toronto’s Sunnybrook and Women’sCollege Health Sciences Centre hopes to tailor asthma care in re-sponse to women’s menstrual fluctuations, as well as pregnancyand menopause.


fully acknowledged in the widerresearch community.

Over the years, researchers doingintegrated research in women’shealth have often struggled withmany aspects of the differencesbetween partners, their institutions,organizations and perspectives.Some of these problems areoutlined in the following sections.

C. Academic Reward Structures

The demands of academic struc-tures in some ways are not condu-cive to partnerships and integratedresearch. For example, academicpartners are often pressured by thedemands of the academic promotionand tenure system. This systemmeasures progress and rewardsbased on the size of the grantswon and received by the individuals’home institution, the speed ofresearch progress, the number ofpublications (single-authored, orfirst-authored, preferably), and thelocation of those publications (peer-reviewed academic journals). Whilekey documents are routinely pub-lished in the “grey literature” or onthe web, they are often not countedin academic structures.

There is still little recognition, timeor funding for the process of devel-oping partnerships. Such pro-cesses, to be authentic, requirethe development of trust, patience,

time and investment of energy. Theseactivities are not fully recognized bythe academic promotion and tenuresystem as part of research, andare often unfunded activities fromthe granting agencies’ point of view.In addition, the goals of the researchpartners may differ, and finding theappropriate roles can take time.Specifically the “impacts” that resultfrom research are often not recog-nized or measured in academicreward structures.

D. Funding Routes

There is often a desire on the partof the academic partners or theirinstitution’s administration to haveresearch funds flow through theirown department at their own univer-sity. This narrow option excludesother departments and other univer-sities, not to mention colleges, otherinstitutions, research institutes,centres and community organiza-tions. While these desires are under-standable, they do not contribute tothe overall spirit of collaboration thatis required to build authentic partner-ships. Increasingly, co-partnering onresearch is bringing demands forloosening these rules to more equita-bly distribute the funds, or to havefunds flow through more than oneroute. However, negotiating theseagreements can take time, and doesnot always engender an open col-laborative spirit of trust among


partners.

E. Timely and EffectiveKnowledge Uptake

Standpoints and goals affect theknowledge exchange process aswell. For community and policy-making research partners, thereare often short and sensitivetimelines in which key findingsneed to be available and present-able. In addition to questions abouthow research can be made asrelevant as possible, true to theexperiences of the players and theirconstituencies, is the question of

how findings can be delivered andutilized in a timely and useful fashion.

The ability to present researchresults in a manner relevant topartners’ concerns is a skill thatacademic researchers do not alwayshave or are not interested in acquir-ing. Sometimes it is necessary tointerpret and present results in newways that will directly affect currentissues or policies. The time requiredfor a peer-reviewed journal article tobe published is often too long a waitfor such interests to be met. Conse-quently, integrated research oftenprecipitates a requirement for differ-

Heart Transplantation

The majority (80%-90%) of heart transplant recipients are male andtheir caregivers are usually female spouses or other family members.Women are less likely to receive transplanted hearts (1:5), morelikely to act as caregivers to HT recipients, and may not be identifiedin research or statistics. One study showed that women may bedisproportionately represented in high-risk HT procedures. Thefollowing 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-sensitivepolicies should be developed to guide HT practice; and there shouldbe explicit efforts toward gender equity in HT surgical programs. Inaddition, economic and social policies are needed to support womenwho act as HT caregivers. Research should be conducted to expandthe 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 toHT rejection (Young, 2000).


ent kinds of writing and reporting ofresults, not all of which are recog-nized as valuable in academiccircles and granting agencies,but are key to providing integratedresearch efforts with widespreadsupport.

F. Conflict Resolution andAvoidance

Conflicts do occur between individu-als, institutions and agencies inpartnership research consortia.Fusion symposium panelists werevery clear in suggesting that conflictresolution models be set down priorto beginning the project, in order tominimize problems. While this isideal, it is often only when problemsarise that research teams focus theirattention on issues such as divi-sions of funding, labour, credit andauthorship. Issues about recognitionof contribution can and ought to beworked out beforehand. More likelyto present themselves during theresearch process, however, areissues of interpretation, presentationand disposition of research resultsand data.

G. Speaking DifferentLanguages

Interdisciplinarity can be somethingthat “allows us to see better andmore” (Grant, Prior & Stewart,2000), but the complexity of practis-ing interdisciplinarity often stems

from a difference in the languageand definitions employed by variousdisciplines and groups.

Differences in language and terminol-ogy affect most integrated researchteams. One conference presenterspoke about the “translation problem”between the biomedical and socialscience communities, pointing outthat while “medical science is fasci-nated by disease, social scientistsabhor the body” (Grant, Prior &Stewart, 2000). Grant, Prior andStewart observed that the medicalsociologist and social epidemiologistcome from two fields that have a lotin common and yet define termsvery differently. Despite standpointand training differences, consciousattempts must be made to simplifyand avoid language that is exclusive.Terminology and jargon that isspecific to one profession or affiliativegroup or another can often be usedto defend territory, not share it. It is nocoincidence that the demystificationof medicine, beginning with language,has been a key goal of the women’shealth movement over the past twodecades, as language differencescan be barriers to understandingand access to power.

H. Stereotypes

There is no doubt that differentsectors and disciplines harbourstereotypes about each other. Inaddition to bridging differences in


language and definitions, research-ers from various disciplines orlocations also have to counterstereotypes about them or thebiases they themselves havetowards others. Traditional biomedi-cal research, without the influenceof social science health research isoften perceived to be biologicallyreductive, impersonal and limited.Sociology and other social sciencessuffer from being perceived as lessscientific than natural and biomedicalsciences and consequently haveless power and prestige. Socialscientists are often perceived as“fuzzy-headed” (Grant, Prior &Stewart, 2000).

As was pointed out by Grant, Prior

and Stewart (2000), both the stereo-types and the limitations flow in alldirections. While social scientistsoften criticize biomedical researchersof biological reductionism “often theyfind it harder to think about biologicalpathways to disease than the otherway around, and thus may be guiltyof social reductionism” (Grant, Prior& Stewart, 2000). In short, stereo-types about others perpetuate inorder to strengthen one’s own pro-fessional or disciplinary identityby undermining the image of otherstandpoints and disciplines. Unfortu-nately, many of these stereotypesmanifest in discussions and judge-ment about methods or theory. Inaddition, these stereotypes emergein uninformed ways in interdiscipli-

Women and HIV

Recent research findings published in Nature Medicine show thatwomen may be infected by HIV in a different way than men: “Data[from this study] indicate that there are important differences in thetransmitted virus populations in women and men, even when cohortsfrom the same geographic region who are infected with the samesubtypes of HIV-1 are compared” (Long et al., 2000). These resultssuggest that developing a suitable vaccine for women may be moredifficult. Earlier studies done in the US and in Europe on how HIV istransmitted focused mostly on men and led researchers to believe thatonly one strain of the virus was transmitted at the time of infection. Thenew 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 infectedwith a more complex virus.


nary grant and publication reviewteams and therefore affect thefunding and publication of interdisci-plinary research.

Stereotypes about community ornon-university based researchersabound as well. There is a widelyheld assumption that communityor non-university based researchersare unskilled at research, uninter-ested in theory, or “politically” driven.Myths about academics abound aswell, suggesting that academics areimpractical, unable to share powerand disconnected from everydayconsiderations and life. It is easy tosee how these stereotypes can befed by the issues that come up incollaborative integrated research.

These dichotomous and woollystereotypes are damaging to thedevelopment of integrated research.Not only is it clear that there aremore than these two groups ofplayers in research, but that all ofthe groups can overlap and mem-bers often share several stand-points. For example, academics arealso members of community organi-zations or act as policy consultants.Community researchers are oftenacademically prepared or haveexperience in policy development.Policy researchers can have com-munity or activist experiences. Andall groups have experiences acrossthe range of the human condition,

which in the best research enter-prises can productively inform anapproach and point of view.

I. Territoriality

Territoriality is another key challengein doing integrated research. Compe-tition and rivalry to “own” an issue orrange of knowledge or to maintain“ownership” is often present betweendisciplines, professions and sectors.Within institutions, departments orfaculties similar impulses are exhib-ited toward territoriality, often runningcounter to engaging in true collabora-tive and interdisciplinary work. Manyof these territorial impulses are dueto traditional reward systems withininstitutions, but others are morepervasively rooted in the mecha-nisms of power.

In women’s health research, animportant historical overlay is thetradition of medicalization of women’sbodies and male dominance inbiomedical research and practiceas both researchers and “subjects.”Indeed, the last 30 years of develop-ment of the women’s health move-ment has been predicated on retriev-ing control of women’s bodies forwomen. In her presentation, Stewartemphasized the value of womenthemselves as consumers andadvocates of women’s health,asserting, “as long as institutionsfeel they own women the women’shealth agenda will be stuck” (Grant,


Prior & Stewart, 2000). Stephenson,from the medical community, raisedthe problems of politics, overcomingegos, and the need to compromiseto find common ground(Stephenson, Amaratunga & Kosny,2000).

J. Power/Control

The challenge of developing authen-tic partnerships is predicated onissues of power and control. Powerand control manifest in a range ofways, from subtle to overt. Kosnyspoke about power and controlissues in partnerships betweenacademic researchers and commu-nity organizations, from the perspec-

tive of one who has worked withcommunity organizations. Centralto the concerns raised by Kosnywere questions revolving aroundthe uneven levels of power that mayexist between potential partners(Stephenson, Amaratunga & Kosny,2000).

For example, community organiza-tions that are disadvantaged may bewilling to agree, implicitly or explicitly,to terms of partnership that are notequal in terms of process or deci-sion-making. Many groups that havewritten letters of support, besidesbeing listed as a partner, have littleactual involvement in the project.Questions of power also affect

Autoimmune Diseases

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


issues such as which communityorganization gets chosen to partnerwith an academic body. Kosnyillustrated various disparities inpower with a scenario of exchangebetween a community organizationmember and an academic re-searcher, warning that partneringis often an academic process thatcommunity groups are required tofit into, resulting in a superficialpartnership.

Power issues manifest regardingother aspects of the integratedresearch process. Different skillsand perspectives are brought toa research project, but they arenot all treated or regarded equally.Even within academic settings, orwithin community settings, thesedisparities exist. Disputes aboutownership of data, authorship orrights to publication may be intrinsi-cally about assumptions regardingpower and imbalances of powerwithin the research teams.

Finally, there are emerging disputesor claims about the rights to doresearch on given populations.Aboriginal communities are increas-ingly clear about asking for controlof the research process from theoutset, to ensure that aboriginalcommunities are enhanced byresearch, not used or exploited.Similarly, associations representingwomen with disabilities have put

forward guidelines for research thatclearly place the power in researchon disabled women in the hands ofwomen with disabilities. Claims bygeographically or socially isolatedpopulations regarding the use of theirgenetic data are also key issues innegotiating research relationships inthe contemporary arena.

K. Bureaucratic Barriers

These are but some of the challengesto doing integrated research. There arealso many bureaucratic barriers orsystem-based issues that do not fitwell with the current trend towardinterdisciplinary and integrated re-search. Issues as basic as the formsrequired to apply for grants or registerfor assistance are often a problem. Forexample, forms and funding methodsthat accept only traditional paradigmsof single Principal Investigator modelsare often inadequate or inappropriate.In addition, there is often no opportunityfor recognition of other than academiccredentials among the partners. Thisalone can demoralize possible part-ners and dissuade involvement fromsome partners in the research enter-prise. Along with these limitations, thereare often compensation or honorariumissues, where payment for researchservices is often a requirement that isnot recognized by traditional grantingagencies, which are often assumingthat an established academic institutionis supporting the research endeavour.


Women and Research

Studies show that women continue to be under-represented in re-search studies. The Stewart et al. study on the representation ofwomen as clinical research subjects concluded that despite beingaware 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 bethe 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 recentstudy Vidaver et al. (2000) carried out a survey of research articlesthat appeared in the New England Journal of Medicine, the Journal ofthe American Medical Association, the Journal of the National CancerInstitute, and Circulation from the years 1993, 1995, 1997 and 1998.They concluded that approximately one-fifth of the studies publishedeach year failed to include women as research subjects, and that thisfigure saw no significant improvement over the five-year period ana-lyzed. Furthermore, only one-quarter to one-third of the studies thatincluded women analyzed data by sex of the subjects, with no signifi-cant change over the time period studied. These findings indicate theneed for increased and consistent awareness and monitoring ofrecruitment of women in clinical research and for the analysis of databy sex of the subjects.

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


Despite the complexities and challenges of integrated health researchthere are many potential advantages. Many of the presenters at theFusion 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 theindividual experiences of women (Grant, Prior & Stewart, 2000). Stewartpointed out the immeasurable value of integrating women themselvesas consumers and advocates into the research process (Grant, Prior& Stewart, 2000). Kim-Sing, in her panel discussion of the VancouverHereditary Cancer Team, remarked on her pleasant surprise at the kindsof 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 theirwealth of information not readily available to community organizations,while community organizations share their “know-how” in approachingproblems in a way that is relevant to those whom the project or researchultimately affects. This symbiotic relationship of shared responsibility inwhich individual strengths are pooled can be the most obvious advantageof not only partnerships, but also the whole enterprise of integratedresearch.

A. Guidelines

Grant, Prior and Stewart pointed out the fundamental need to respectthe contributions of different disciplines and the adherence to intellectualrigour. Kosny, in speaking about partnerships from the more specificperspective 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 purposesas preferred: transparency of process, the opportunity for both groupsto clearly express needs and expectations, agreements in writing and

Opportunities of Integrated ResearchVIII


in detail, alternate meeting siteswhere all members will feel welcome,explanation of all jargon and abbre-viations, electing rotating co-chairs(one from the academic side, onefrom the community organization) tolead discussions, electing a liaisonmember to communicate with mem-bers and monitor the quality ofpartnership, and the development ofuniversity guidelines for partneringwith community groups (Stephenson,Amaratunga & Kosny, 2000).

B. Funding Mechanisms

There are significant and productivechanges that could be made infunding practices for research. Atthe moment, even when collaborativepartnerships are encouraged or

required by funding programs theprocedures of application and award-ing or grants is predicated on theacademic model. Implicit in the appli-cation forms and the requirements foracademic-style CVs is the centralityof the academic record and publica-tion profile of the applicant. Thisapproach to applications and propos-als is often alienating to non-academicor non-university based researchers,and can send a message at thebeginning of the research processof differential valuing of types ofexperiences or career records.After the proposal is submitted,peer review committees make rankingand awards decisions. Often thesecommittees are not fully representa-tive of the types of applicants. Finally,

Effects of Alcohol on Women’s Brains

New research suggests that alcoholism may have a particularlydamaging effect on women’s brains. The 2001 study lead by DanielHommer and his colleagues at the National Institute on Alcohol Abuseand 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-alcoholicwomen are greater than the magnitudes of the differences betweenalcoholic men and non-alcoholic men.” The results of the study, whichare consistent with greater vulnerability to alcohol neurotoxicityamong women, showed that “the differences in gray and white mattervolumes between alcoholic and non-alcoholic men were significant.But the significance of these differences was a smaller magnitudethan the significance of the differences between alcoholic and non-alcoholic women” (Hommer et al., 2001).


if and when awards are made to aresearch project, the funding mecha-nisms are set up to funnel fundsthrough universities. Other institutionsand organizations are usually ex-cluded from the opportunity forstewardship and control of researchfunds. Since there is a vested interestin maintaining control of researchfund administration, these changesare hard to achieve.

C. Peer Review

Peer review processes have beenand continue to be a point of conten-tion in research circles. Devotion toa peer review model is deeply rootedas the only way to ensure qualitycontrol and excellence in research.Most research granting bodiesexercise detailed peer review sys-tems, often including internal andexternal reviewers and laboriousreview discussions. These decisionscan sometimes be hotly debated andresult in outcomes that will advancesome research and researchers overothers. Criticisms of traditional peerreview include the narrowness ofthe peer review panels, the lackof interdisciplinary knowledge,the absence of “peers” for groupstypically or previously excludedfrom receiving research grants, theadvantage of having had previouslyfunded research or the difficultiesin advancing novel approaches orideas.

These criticisms do not even touchupon the natural predisposition ofpeople to endorse what they knowand understand and to advancewhat they are passionate about.Some notable attempts to include“lay” members in peer review panelshave taken place, but an overhaulof the peer review system at largeis required to support integratedresearch endeavours. Expandingthe membership of review panelsto include experts who may not bescientists or academics has beensuggested, as well as increasedflexibility in creating review panelsfor special competitions. Overall, theissue of how to accurately constitutepanels of true peers to review propos-als in a transparent manner is criticalto peer review reform.

D. Journals and Reports

There are significant opportunitiesto support integrated research viathe products of the activity. Forexample, journals and other publica-tions could play a key role in promot-ing better research by asking forsex and gender to be consideredin all articles presented for review,or asking the authors to justify whythis is not possible. This will providevital information that affects futureresearch plans, treatment and ser-vice decisions, and increases thegeneralizability of knowledge. In thisway, better quality and more useful


results can be conveyed to audi-ences. In addition, journals andreports can focus on varied targetssuch as policy, academic, commu-nity, public or student audiences.This can include pointing editorialstoward the interests of these groupsor deliberately using the report as amechanism for building knowledgeacross and between audiences.Finally, format and presentation cancount, transmitting different mes-sages in different media. Electronicpublishing, interactive websites andCD-ROMs combine with traditionalformats to fill a wide variety of prefer-ences and learning styles. Shortreports or abbreviations of keyinformation can be useful for policydevelopment, influencing decisionmakers and assisting communitygroups in having an influence.

E. Knowledge Uptake

Knowledge uptake and managementis a key consideration in the pursuitand development of integratedresearch. Knowledge uptake ad-dresses the problem of makingsure that the research results aredelivered to people who can applythem and utilize them to make adifference. These destinations couldbe the general public, policy makers,politicians, advocacy organizations,other researchers, clinicians or healthplanners and administrators, amongothers. Knowledge uptake is increas-

ingly stressed in research, signallinga departure from the days of fundingand doing research in isolation,without a clear plan for knowledgeuptake or exchange. Increasingly,such plans are required at the outsetof the project and evidenced in theproposal stage. This is an importanttrend in integrated research, as itidentifies and respects differentinterests and realities, addressesthe relevance of the research andits methodology and encourages thedevelopment of appropriate dissemi-nation plans.

F. Cultural Shifts

A key opportunity exists now forresearch cultures to change. Thisopportunity is more real than everin Canada as research policy andguidelines have clearly embracedtransformation as a goal of healthresearch via the establishing of theCanadian Institutes of Health Re-search. While some perceive changeas both threatening and dangerous,it can also be an opportunity forgrowth. Integrated research is suchan opportunity. Specific culturalchanges that academia may makeinclude training on partnership buildingand maintenance, recognition in thetenure and promotion system of thistype of work and its products, andbridge-building training opportunitiesfor non-university based researchers.

Changes are required in other sectors


as well. While community research-ers can offer insight and skill to otherpartners in networking and identifyingresearch agenda, research skilltraining should be sought to buildcapacity for research in the commu-nity. Clinical researchers can offerthe immediacy of their researchconcerns and agendas and concretesituations for pursuing new research,but also need to demystify their

language and build stronger networksoutside of the clinical realm. Whilepolicy researchers can offer insightinto policy research methods, policyopportunities and dissemination andknowledge exchange routes thatwould make a difference, they toocould modify jargon and increaserelevance by demystifying their roles.All have something to offer, all havesomething needing change.

Women and Smoking

After decades of increased smoking among girls and women thereis now rapidly emerging knowledge about the health effects on womenor the gender differences regarding smoking practices and healtheffects. For example, women who smoke are twice as likely to getrheumatoid arthritis as non-smokers (“Smoking”, 2000), a link that isdeemed complex and difficult to explain without further research,according to Kenneth Saag at the University of Alabama. Othereffects of smoking include lung conditions. Emphysema may bemisdiagnosed in women. According to the Surgeon General’s reporton women and smoking, a study carried out by Dodge et al. foundthat “among subjects aged 40 or older with a new diagnosis ofasthma, emphysema or chronic bronchitis based on self-report,women were more likely than men to receive a physician diagnosisof asthma or chronic bronchitis, and men were more likely to receivea diagnosis of emphysema” (US Department of Health and HumanServices, 2001). The report further points out the need for furthergender-based research. Clinical studies are divided as to whether ornot women have lower cessation rates compared to men, but manystudies have not reported sex-differentiated cessation results. Thereport also indicates biophychosocial factors that may specificallyaffect women with regard to smoking maintenance, cessation orrelapse. These factors include pregnancy, weight gain, depressionand the need for social support.


In summary, there is a vast opportunity for developing integrated healthresearch in Canada, made more timely by the increasing funding tohealth research in the past two years. Just as important are the vastlyincreased opportunities for training of health researchers in Canada.This will allow new research approaches and perspectives, moremethodological mixing and more interdisciplinarity to take root, ensuringa generation of change and transformation in how health research iscarried out in Canada.

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

A key development over the past few years has been the increasedattention paid to sex and gender differences in health and health re-search. It is true that more and more knowledge generation is occurringto fill in huge gaps regarding sex and gender differences in health.Despite resistance among scientists, the public understands readilythat clearly identifying sex and gender differences in health researchis 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 therelevance of health research and the chance that relevant results findtheir way to people and places where they can be used to make a realdifference in the lives of Canadians. This is the promise of integratedresearch.

IX Conclusion


A. Accomplishing Integrated Research

The participants at the Fusion symposium had an opportunity to critiquea 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 thisreport 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 levelto discuss approaches to research, or with research teams to activelydesign a research agenda, focus on a research question, work out amethodological approach or analyse and disseminate research results.

B. Assuring Relevance to Communities

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

C. Identifying the Entry Points for Researchers

The second ring indicates the four main pillars of health research asidentified by the Canadian Institutes of Health Research (CIHR). Thisring identifies the possible “entry points” for health researchers andreminds us to consider the research question or idea from each ofthese perspectives. This discussion also allows us to determine howto 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 andgender and assists in forming the research question. Is the health issuemore serious, less understood, unique to, more prevalent or a higher

X The Fusion Model


risk in females? Is the responseto the health issue or the patternof intervention different or gendered?This ring identifies knowledge gapsand reinforces the necessity ofacknowledging sex and gender inhealth.

E. Changing Paradigms toEnsure Broader Thinking

This ring suggests several para-digms for discussion to ensure thebroadest approach to the healthresearch issue. All of these para-digms are useful and need to bebrought together to interact andcontribute to each other. Someresearchers see their work as partof the fight against a disease, suchas cancer or diabetes. Others willsee the life cycle as their point ofreference, using the developmentalissues of childhood or old age astheir frame. Some issues are con-ceived as risk behaviours, suchas addiction or sexually transmitteddiseases, while others are seenthrough the lens of care or treatment(access to care, quality of care,efficacy of treatments). The environ-ments in which people exist have ahuge influence on their health andrequire research. Finally, the inequal-ity of health between groups andwithin groups is a key paradigmfor understanding how to frameresearch questions and analyseresults. This ring allows identification

of the paradigm being used andencourages interaction betweenparadigms when possible.

F. Adding Policy to the Discussion

This ring encourages the discussionto revisit the four traditional pillars ofhealth research (as per the CIHR)and to make sure that relevantinformation from all four sectors isincluded. The additional directivefrom this ring is to engage with thepolicy issues related to the research.What policy research questionscould be pursued or are affected bythis work? How does policy affectthe health status of the population?How could policy be affected by theresearch?

G. Operationalizing IntegratedResearch

The next ring indicates the com-ponents required for integratedresearch to be fully successful.Capacity building is critical to thesuccess of integrated research.This includes cross training onmethodological approaches andmulti-, inter- and transdisciplinarity.It also means developing meaningfulpartnerships that are truly collabora-tive and as equal as possible. Thisring is essential to determining howto best mount the project and whatparts of the team or process needdevelopment.


H. Ensuring KnowledgeExchange and Return

Finally, central to successfuloperationalization is effective knowl-edge exchange. How is the knowl-edge going to be disseminated andhow 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 largepart 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 andMental Health identified factors that influence clinicians’ genderedapproaches to women with illnesses such as schizophrenia. Shedescribed the issues surrounding women and schizophrenia, suchas patients’ vulnerability in society, economic poverty, victimizationand high suicide rates. Dr. Elaine Walker has researched what isknown about sex differences to help prevent the onset of schizophre-nia. Research on adolescents with schizotypal personality disordershows sex differences with regard to attention, thinking and socialproblems. The hope is to develop a gendered approach in recognizingand intervening with the adolescent behaviours that may foretell ofmore serious psychotic problems in adulthood (Seeman, 2000). Dr.Jeffrey Lieberman has investigated sex and gender differences inschizophrenia and the importance of such differences in the develop-ment of optimal treatment strategies. Issues such as earlier onset inmen, better treatment response in women, better premorbid functionin women, shorter prodome in women, and more adverse effects ofantipsychotic drugs in women have clear clinical implications.

be created to feed the new knowl-edge back to the stakeholders and,ultimately, the communities?


Following are four illustrations of applying the Fusion model to healthresearch questions that were discussed at the Fusion symposium. Theyare described using the four pillars of research as entry points, startingwith an example that would traditionally be considered primarily by onesector 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 exampleand was developed to inspire an integrated program of research. At firstglance, the area of transfusion medicine and artificial blood productsseems gender-neutral and limited to a biomedical perspective, but thereare significant gendered and sex differences for women in the area oftransfusion medicine. It is known that women are at higher risk earlierin 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 forwomen because of the risks of subsequent haemolytic disease of thenewborn. Furthermore, women who have been pregnant are often at adisadvantage in the course of treatment for cancer due to resistance toplatelet transfusions because of antibodies. Furthermore, when womenare infected with transmissible diseases through blood transfusion, theythen have to deal with issues of transmission to a fetus.

However a series of questions was raised about blood and artificialhaemoglobin that involve broader approaches, the integration of sexand gender, and the other pillars of research. Following are selectedexamples of the range of questions raised.

Basic Biomedical: The potential use of standard transfusion productsin pregnancy carry risks related to vertical transmission andalloimmunization – what are the risks and benefits regarding theseissues with the use of artificial hemoglobin?

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

XI Integrated Research Program: Examples


transfusions and thus transfusion-related complications? What impactwould artificial hemoglobin have onthis?

Health Services and Systems:What are the costs and diseaseburdens for those who can notafford artificial hemoglobin, espe-cially in developing countries? Giventhe differing social status of womenand issues related to their accessto care in some parts of the world,what would be the gendered issuesrelated to the use of a more expen-sive transfusion product in men andwomen? Are there any genderedissues to be considered regardingblood donor behaviour and theimpact on supplies of platelets andother factors with increased avail-ability and awareness about artificialhemoglobin?

Social and Cultural Dimensions:What are the issues of acceptabilityof artificial blood transfusionscompared to real blood? What arethe differences across women andmen in different population groupsin accepting artificial hemoglobin?

Policy: Who will have access tolimited supplies of artificial hemoglo-bin? How will it be determined?Who will pay for it? What legalissues arise in determining policyregarding artificial hemoglobin?

B. Applied Clinical: Womenand Heart Transplantation

Women and heart transplantation isan example of an issue that has anobvious clinical entry point into themodel, but which also raises a widerange of sociocultural and policyissues. The majority of heart trans-plant recipients (80-90%) are maleand are most often cared for byfemale spouses or family members.According to Lynne Young, “thetechnical aspect of this procedure,and the related personal experi-ences, are deeply embedded in aframework of social structures atmacro-, meso-, and micro-levels ofCanadian society: government policy,health care delivery systems, healthcare relationships, and families oftransplant donors and recipients”(2000). Some questions that arosewhen applying the integrated modelto the issue of heart transplantationwere:

Basic Biomedical: What are the sexand gender differences in cardiovas-cular pathophysiologies and hearttransplant rejection?

Applied Clinical: Is there anydifference in the effectiveness ofimmunosuppressant therapy amongwomen and men following hearttransplantation? (Young, 2000)

Health Services and Systems: Whyis the majority of heart transplantation


done on men? Why are womeninvisible in many studies? Whyare women less well representedas physician providers (i.e., hearttransplant surgeons) in this areaof medicine? How do we effectivelymeasure women’s caregiving workin heart transplantation, both infor-mal and formal?

Social and Cultural Dimensions:What social policies are needed tobalance and recognize women’sroles in heart transplantation asboth recipients and caregivers?

Policy: What are the implicationsof introducing equity considerationsinto donor and transplantationpolicies?

C. Health Services andSystems: Homecare

Homecare is a health servicesand systems issue that has broadimplications for women in theirmultiple roles as health workers,caregivers and consumers. Healthcare reform, with its emphasis ontransferring the care setting fromthe hospital to the home, raisesquestions such as: Who does thework of care giving? Who pays forthe care? What are the personaleconomic and psychosocial costsof caregiving? Are these costsgendered? To what extent arevarious health care services inte-grated both in formal (hospital) and

informal (home) settings? The major-ity of care providers are women,especially in the informal sector,and dependents may be childrenor other family members. As womentend to outlive men, the dependentsare in many cases their male rela-tives or spouses. Economically,women, especially older women,may have fewer resources anddifficulty in accessing care.

Basic Biomedical: How doescaregiving contribute to the phys-iology of the stress response andinteract with sex differences andgendered factors?

Applied Clinical: How does theburden of caregiving affect thecaregiver’s own medical care?How do caregivers’ health status,stress and injury levels compareto women who are not caregivers?

Health Services and Systems:How does the public health caresystem coordinate, train and supportboth formal and informal caregivers?What are the costs of shifting carefrom institutions to community andhome settings?

Social and Cultural Dimensions:How does gender socializationimpact on the adoption of caregivingroles? How do different culturalgroups address caregiving? Howdoes ability level and age affectthe nature of caregiving networks?


Policy: How can policy shifts com-pensate or ameliorate the health andeconomic effects of caregiving onwomen?

D. Social and Cultural Dimen-sions: Diabetes and AboriginalWomen

Aboriginal peoples in Canadaexperience poor health status asa group. This manifests in higherprevalence of several diseases andconditions. One of these is diabetes.The social and cultural dimensionsof the prevention, prevalence andtreatment of diabetes provided thestarting point for the discussion. Adramatic shift in aboriginal health inCanada has occurred in the post-colonial time period. This changehas been accompanied by a culturalloss of control and autonomy. Riskfactors including alcohol, smoking,inactivity and shifts in diet areaspects of this cultural shift.

Basic Biomedical: What are thebiological implications of dietaryshifts from pre-colonial times? Howdoes genetics play a role in predis-posing aboriginal women and mento diabetes? How do high fertilityrates expose aboriginal women tomore gestational diabetes, and atwhat age?

Applied Clinical: How is treatmentbest made culturally appropriate andgender-sensitive? How could health

promotion and treatment of otherclinical issues (i.e., alcohol use,reproductive health or obesity) beintegrated to control diabetes? Howis self care and dietary managementeducation made suitable and effec-tive for women and men?

Health Services and Systems: Howare gender, geographic location andaccess to care issues in preventingand controlling diabetes?

Social and Cultural Dimensions:How do women serve as modelsfor diet and eating behaviours inaboriginal families? How has themedia contributed to shifts in aborigi-nal dietary habits? How does culturalloss contribute to the social determi-nants affecting the prevalence ofdiabetes?

Policy: How do policies shiftingcontrol of health services to abor-iginal communities improve theprevention and treatment of diabetes?How can the research process andrelated policy be affected by aborigi-nal involvement?


Project Leader

Penny Ballem, MD, FRCPVice-PresidentWomen’s and Family Health Programs,Children’s & Women’s Health Centreof British ColumbiaAssociate Professor of MedicineUniversity of British Columbia

National Steering Committee

Sharon Buehler, PhDAssociate ProfessorSchool of Medicine, Memorial University

Appendix 1: The Steering Committeefor the Project Women’s Health in theCanadian Institutes of Health Research

of Newfoundland

Joan Bottorff, PhDAssociate ProfessorSchool of Nursing, University of BritishColumbia

May Cohen, MDProfessorDepartment of Family Medicine,McMaster University

Anna Day, MD, FRCPAssociate ProfessorDepartments of Medicine and HealthAdministration, University of TorontoConsultantWomen’s Health, Sunnybrook &Women’s College Health SciencesCentre

Dawn Fowler, MA, MUPConsultantHealth Information, Iqaluit

Lorraine Greaves, PhDExecutive DirectorBritish Columbia Centre ofExcellence for Women’s HealthClinical Associate ProfessorHealth Care and Epidemiology,Faculty of Medicine, Universityof British Columbia

Arminée Kazanjian, PhDAssociate DirectorCentre for Health Services andPolicy ResearchAssociate ProfessorFaculty of Medicine, Universityof British Columbia

Michael Klein, MD, FRCPDirectorFamily Health Programs, Children’s& Women’s Health Centre ofBritish ColumbiaHeadDepartment of Family Practice,Children’s & Women’s HealthCentre of British Columbia


Yvonne Lefebvre, PhDVice-President of ResearchUniversity of OttawaVice-President of Academic ResearchOttawa General HospitalProfessorDepartment of Medicineand Department of Biochemistry,University of OttawaSenior ScientistLoeb Health Research Institute

Diane Ponee, MSWDirectorWomen’s Health Bureau, Health Canada

Donna Stewart, MD, FRCP, D. Psych.ChairWomen’s Health, Toronto HospitalProfessorFaculty of Medicine,University of Toronto

‘


Co-ChairPenny Ballem, M.D.Vice-PresidentWomen’s and Family HealthPrograms, Children’s & Women’sHealth Centre of British Columbia

Co-ChairKaren Grant, PhDAssociate Dean (Research)Faculty of Arts,University of ManitobaAssociate ProfessorDepartment of Sociology,University of ManitobaChairExecutive Committee,National Network on Environmentsand Women’s Health

Carol Amaratunga, PhDAssociate Professor (Research)Dalhousie UniversityExecutive DirectorMaritime Centre of Excellencefor Women’s Health

Pat Armstrong, PhDNational Network on Environmentsand Women’s Health

Robin Barnett, B.A.ChairBoard of Directors,Canadian Women’s Health Network,Vancouver

Sharon Batt, M.A.Nancy’s ChairWomen’s Studies,Mount St. Vincent University

Appendix 2: The Working Group onGender and Women’s Health in the CIHR

Madeline BoscoeExecutive CoordinatorCanadian Women’s Health Network,Winnipeg

Nadya Burton, PhDCommunity DirectorNational Network on Environmentsand Women’s Health

Donna Chow, PhDAssociate ProfessorDepartment of Immunology,Faculty of Medicine,University of ManitobaBoard MemberWomen’s Health ResearchFoundation of Canada Inc.

Anna Day, M.D.ConsultantWomen’s Health,Sunnybrook and Women’s CollegeHealth Sciences Centre

Maria De Koninck, PhDProfessorDépartement de médecinesociale et préventive,Université Laval,Sainte-Foy, Québec

Linda DuBick, M.A.DirectorPrairie Women’s Health Centreof Excellence

Gina Feldberg, PhDAcademic DirectorNational Network on Environmentsand Women’s Health


Anne Rochon Ford, B.A.Working Group on Womenand Health Protection

Lorraine Greaves, PhDExecutive DirectorBritish Columbia Centre ofExcellence for Women’s Health

Olena Hankivsky, PhDResearch AssociateBritish Columbia Centreof Excellence for Women’s HealthSessional LecturerDepartment of Political Science,University of British Columbia

Arminée Kazanjian, PhDAssociate DirectorCentre for Health Servicesand Policy ResearchAssociate ProfessorFaculty of Medicine,University of British Columbia

Yvonne Lefebvre, PhDVice-President of ResearchUniversity of OttawaVice-President of Academic ResearchOttawa General HospitalProfessorDepartment of Medicine andDepartment of Biochemistry,University of Ottawa

Abby Lippman, PhDProfessorDepartment of Epidemiologyand Biostatistics,McGill University

Rhonda Love, PhDDepartment of Public Health Sciences,University of Toronto

Heather Maclean, PhDDirectorCentre for Research in Women’sHealth,University of Toronto

Katherine Macnaughton-OslerCommunity Co-directorCentre d’excellence pour la santé desfemmes,Université de Montréal

Janet Maher, PhDCommunity Relations OfficerCentre for Research in Women’s Health,University of Toronto

Marika Morris, M.A.Research CoordinatorCanadian Research Institutefor the Advancement of Women

Karen Messing, PhDDirectorGraduate Programme in ErgonomicInterventionProfessorDepartment of Biological Sciences,Université du Québec à Montréal

Linda MurphyManagerResearch Programs,Canadian Health Services ResearchFoundation,Ottawa

Health Canada LiaisonDiane Ponée, MSWDirectorWomen’s Health Bureau,Health Canada

Health Canada LiaisonLynne Dee Sproule, M.Ed.ManagerCentres of Excellence for Women’sHealth Program,Women’s Health Bureau,Health Canada

Donna Stewart, M.D.Chair in Women’s HealthToronto HospitalProfessorFaculty of Medicine,University of Toronto


Bilkis Vissandjée, PhDAssociate ProfessorSchool of Nursing,Université de MontréalAcademic Co-DirectorCentre d’excellence pourla santé des femmes,Université de Montréal


Farah AhmadUniversity of Toronto

Carol AmaratungaExecutive DirectorMaritime Centre of Excellence forWomen’s Health

Penny BallemVice-PresidentWomen’s and Family HealthPrograms, Children’s & Women’sHealth Centre of British Columbia

Lynn BeattieVancouver General Hospital

Madeline BoscoeExecutive CoordinatorCanadian Women’s Health Network

Joan BottorffUniversity of British Columbia

Sharon BuehlerProfessorMemorial University ofNewfoundland

Mary BunchYork University

Jill CameronUniversity Health Network,University of Toronto

Pat CampbellSenior Vice PresidentWomen’s College Campus,Sunnybrook and Women’s Hospital

Appendix 3: Fusion: A Symposiumon Integrated Research – Speakerand Participant List

Elaine CartyUniversity of British Columbia

Donna ChowAssociate ProfessorFaculty of Medicine,University of Manitoba

Jan ChristilawObstetrician/Gynecologist

Barbara CliftonNative Women’s Associationof Canada

May CohenProfessor EmeritusFaculty of Health Sciences,McMaster University

Anna DaySunnybrook and Women’s CollegeHealth Sciences Centre

Janice Du MontCentre for Research in Women’sHealth

Michelle Dupuy-GodinCentre d’excellence pour la santédes femmes

Erica EasonAssistant ProfessorOttawa Hospital, General Campus

Connie J. EavesDeputy DirectorTerry Fox Lab, B.C. CancerResearch Centre


Susan EdmondsMaritime Centre of Excellencefor Women’s Health

Josephine EnangIWK Grace Health Centre

Marsha ForrestMemberBoard of Directors, AboriginalNurses Association of Canada

Dawn FowlerManagerHealth Information and Research,Government of Nunavut

Renee-Louise FrancheUniversity Health Network,University of Toronto

Wendy FrisbyUniversity of British Columbia

Karen GrantAssociate DeanUniversity of Manitoba

Lorraine GreavesExecutive DirectorBritish Columbia Centreof Excellence for Women’s Health

Kathy GreenbergChildren’s & Women’s HealthCentre of British Columbia

Olena HankivskyResearch AssociateBritish Columbia Centreof Excellence for Women’s Health

Sue HarrisChildren’s & Women’sHealth Centre of British Columbia

Effie HenryActing DirectorBritish Columbia Ministry of Health

Marcia HillsMAC ChairUniversity of Victoria/Minister’sAdvisory Council on Women’s Health

Ilene HymanResearch ScientistCulture, Community andHealth Studies – Clarke Division

Maria IssaUniversity of British Columbia

Joy JohnsonUniversity of British Columbia

Moira KapralUniversity Health Network,University of Toronto

Arminee KazanjianAssociate ProfessorUniversity of British Columbia

Sandra KirbyAssociate ProfessorUniversity of Winnipeg

Susan KirklandGraduate Program CoordinatorDalhousie University

Jude KornelsenResearch AssociateBritish Columbia Centreof Excellence for Women’s Health

Christine KorolUniversity of British Columbia

Agnieszka (Iggy) KosnyActing Community DirectorNational Network on Environmentsand Women’s Health

Yvonne LefebvreVice-DeanResearch Faculty of Medicine,University of Ottawa

,


Peggy McDonoughDepartment of Sociology,York University

Heather McKayUniversity of British Columbia

Lynn MeadowsUniversity of Calgary

Anne-Marie Mes-MassonHopital Notre-Dame

Marina MorrowResearch AssociateBritish Columbia Centreof Excellence for Women’s Health

Nancy PooleResearcherChildren’s & Women’sHealth Centre of British Columbia

Jerilynn PriorProfessorUniversity of British Columbia

Isabelle SavoieResearch AssociateUniversity of British Columbia

Tracee SchmidtSenior Policy AnalystBritish Columbia Ministry of Health

Dorothy ShawAssociate Medical DirectorChildren’s & Women’s HealthCentre of British Columbia

Susan SherwinUndergraduate Co-ordinatorWomen’s Studies, Dalhousie University

Leslie SpillettUniversity of Winnipeg

Lynne Dee SprouleManagerCentres of Excellence for Women’s

Health Program, Women’s Health Bureau,Health Canada

Mary StephensonChildren’s & Women’s HealthCentre of British Columbia

Donna StewartProfessor and ChairWomen’s Health, University HealthNetwork, University of Toronto

W. E. ThurstonDirectorOffice of Gender and Equity Issues,Department of Community Health Science

Aubrey TingleExecutive DirectorBritish Columbia Research Institutefor Children’s and Women’s Health

Barbara VanderhydenOntario Cancer Research Centre

Bilkis VissandjéeCodirectriceCentre d’excellence pourla santé des femmes

Barbara WiktorowiczChair of the BoardPrairie Women’s Health Centreof Excellence

Doug WilsonHeadChildren’s & Women’s HealthCentre of British Columbia

Christel WoodwardProfessorDepartment of Epidemiology,McMaster University

Hans H. ZinggDirectorDepartment of Medicine,McGill University

>


Endnotes1 The CIHR Act describes the four pillars of research that are to cutacross the work of all the Institutes: basic biomedical; health systemsand 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 theFinal Report of the Interim Governing Council (2000). However, interdis-ciplinary research is argued to be superior to multidisciplinary researchby Grant, Prior and Stewart (2000), as it denotes interaction betweendisciplines that is meaningful and additive, as opposed to simply havingdifferent disciplines work in parallel on the same issue.

3 For example, the Centres of Excellence for Women’s Health Programfunded by Health Canada is premised on community-academic-policypartnership models. The CURA program of the Social Sciences andHumanities Research Council is another example.


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 forWomen’s Health, BC Women’s Hospital and Health Centre, & MedicalResearch 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 forWomen’s Health, BC Women’s Hospital and Health Centre, & MedicalResearch 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 forWomen’s Health, BC Women’s Hospital and Health Centre, & MedicalResearch Council – Canadian Institutes of Health Research Opportu-nity Program, Vancouver, Canada.

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

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