Moving Population and Public Health Knowledge Into Action

Women's health


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Cases:

The Healthy Balance Research Program: Knowledge translation for women's unpaid caregiving


Carol Amaratunga, Ontario Women's Health Council Chair, University of Ottawa
Brigitte Neumann, Nova Scotia Advisory Council on the Status of Women
Barbara Clow, Atlantic Centre of Excellence for Women's Health, Dalhousie University

Viewing knowledge generation and translation as a continuous process, the Healthy Balance Research Program (HBRP) brings together researchers, policy makers, health practitioners and the wider community to develop a comprehensive picture of the unpaid and generally invisible work of family caregivers in Nova Scotia. The HBRP has developed extensive community linkages through equity reference groups representing marginalized women's groups. These groups provide social insight into the research process and social oversight of knowledge translation and policy uptake activities. The success of the program's knowledge translation activities has resulted in significant national uptake of HBRP research findings.

Background


Women have always been guardians of public health and caregivers to family members who are not able to look after themselves. Health policy makers and health care professionals acknowledge that caregiving work is usually performed by women. However, the scope of that work, its economic and health consequences and the policy and program interventions that would offer support to those in the caregiving role are not well defined or understood. This is particularly the case for women who are marginalized by race, ethnicity, Aboriginal status or disability. With increasing policy concern about declining birth rates on the one hand, and an older population with higher dependency on the other, there is increasing recognition that support to women and families needs to become more effective.

The Healthy Balance Research Program (HBRP)* aims to develop a comprehensive picture of the unpaid and generally invisible work of family caregivers in Nova Scotia. It brings together more than twenty-five researchers, policy makers, health practitioners, communications professionals and members of the broader community to provide useful information to caregivers and their communities and to the health care and public policy domains. The program has a particular commitment to the inclusion and participation of women whose concerns are often not considered.

The HBRP is funded and administered as a CIHR Community Alliance for Health Research initiative through the Atlantic Centre of Excellence for Women's Health at Dalhousie University, but is physically located at the offices of the Nova Scotia Advisory Council on the Status of Women, a provincial government agency. The Advisory Council has a legislated mandate to advise governments and bring forward the concerns of women; core functions of policy and research, information dissemination and community education and community liaison and rural outreach; and strategic goals of social inclusion, economic equality and improving women's health. The Women's Health Research Unit at the University of Ottawa's Institute of Population Health is the third partner.

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The KT initiative


The HBRP conceives of knowledge generation and translation as a continuous process. Much social science research, particularly when grounded in principles of action research, emphasizes the need to include subjects in the research process itself—from setting the research question, to determining appropriate, effective and ethical implementation and, finally, in utilizing the results at political, policy and community levels.

The HBRP began as a partnership between an academic principal investigator (Carol Amaratunga) at the Atlantic Centre of Excellence for Women's Health and a community principal investigator (Brigitte Neumann) at the Nova Scotia Advisory Council on the Status of Women. When Carol Amaratunga later moved to the University of Ottawa, the research partnership evolved into a triumvirate with three co-directors (Barbara Clow, as director of the Atlantic Centre, joined the project as the third principal investigator).

The co-directors share responsibility for overall project policy and co-management. We bring together individuals and organizations interested in caregiving as a research topic and a policy and program issue, and see the project as an interactive "web" of people with shared ownership. The HBRP has teams dedicated to qualitative research, quantitative research, secondary data analysis and ethnographic "household" portraits.

Reference group members are useful critics, pointing out the weaknesses in secondary data that do not reflect the realities of caregivers of various cultural backgrounds and ability status.

In order to address the issues of compounded inequality and marginalization, we also have four equity reference groups: women of African descent, women with disabilities, Aboriginal women and immigrant women. Research team members meet with the equity reference groups to present findings and to incorporate their feedback into ongoing research. Reference group members help to structure research questions, recruit participants for qualitative research and interpret research findings. They are useful critics, pointing out the weaknesses in secondary data that do not reflect the realities of caregivers of various cultural backgrounds and ability status. Furthermore, they are key players in developing ways to feed research findings back to their communities, who are then able to bring both concerns and potential solutions to the media, policy and program officials and elected representatives.

We communicate our research findings back to stakeholder communities in three ways. First, we hold press conferences and publication releases to present our research findings and policy recommendations to the media. Second, we host forums with decision makers and policy audiences to review our research findings and discuss implications for policy change and action. They in turn share HBRP reports, fact sheets, and research findings with members of their respective community constituencies and networks. Third, we hold semi-annual and annual retreats, think tanks, and meetings with our four equity reference group leaders. Through its appointed members and staff, the Advisory Council also brings research findings to groups such as the African United Baptist Association Women's Institute, the Nova Scotia Native Women's Association, the Nova Scotia League for Equal Opportunities, and the Human Resources Association of Nova Scotia.

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Results of the KT experience


To date, the HBRP research findings demonstrate that the currently available patchwork of benefits needs to be fundamentally revised to provide all Canadians, both women and men, with fair support for their caregiving roles. Issues such as exhaustion, isolation and difficulty in dealing with care bureaucracies face caregivers in both urban and rural settings. The expectations facing women in our equity reference groups are, if anything, even higher than those faced by mainstream women. We need to translate increased recognition for caregivers, better support for caregivers, and a deepened grasp of the relational and reciprocal aspects of caregiving into practical and effective measures for implementation at the health practitioner and organizational level, the employment practices level and the level of tax and transfer policies.

HBRP funding concludes in March 2006. As our four qualitative and quantitative research projects near completion, we will build on preliminary work to develop policy briefings for provincial and federal officials. For example, work related to tax and transfer policy affecting caregivers was presented to the 2004 annual forum of the Ministers Responsible for the Status of Women. As well, we co-hosted a national workshop where researchers and decision makers met to consider various models of financial compensation for caregivers. That workshop will in turn serve as a springboard for a national roundtable between the HBRP and the Canadian Policy Research Networks (CPRN) to explore Canada's health and social policy architecture in relation to unpaid caregiving. This event will bring together researchers and policy makers from government, community, clinical and academic sectors, and will synthesize data and findings from both the HBRP and another federally funded project on the marginalization of dependent adults.

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Lessons learned


Media coverage of research results raises awareness in the general public, but is also helpful in attracting the attention of other target groups.

Media coverage of research results raises awareness in the general public, but is also helpful in attracting the attention of other target groups, including professional associations, community groups, affected individuals and the politically active. We had an extremely positive experience in communicating research results documenting that women's paid and unpaid work levels are high and, in certain caregiving situations, stressful, with good local attendance and national-level uptake. However, while positive media coverage is highly desirable for placing an issue on the public agenda, additional approaches are essential.

The equity reference groups are perhaps the most important KT mechanism of the HBRP. They have provided invaluable advice and counsel throughout the life of the project, from the early conceptualization of qualitative focus groups, through the design of a quantitative survey and ethnographic household portraits, to the national CPRN policy forum. Reference group members have been instrumental in helping the research team members establish linkages with their communities, particularly in recruiting individuals and households to participate in the research and community meetings. They have also served as an important "accountability" sounding board for the research team members and have helped to ensure that the research remains culturally sensitive.

Reference group members have been instrumental in helping the research team members establish linkages with their communities.

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Conclusions and implications


The knowledge translation (KT) skills required to bring research findings about the lived realities of caregivers to communities, professionals and policy audiences are varied. Good media support, the ability to work cross-culturally and cross-sectorally, the ability to link community groups and policy makers, strong networking and coordination skills and a willingness to move beyond the beaten path are essential.

It is important to keep in mind that this kind of KT may not be rewarded within academic settings: the young scholar would definitely be advised to prepare papers for publications in high-impact journals, rather than spending scarce time discussing the implications of research findings with a group of rural women. But the benefit of working in a partnership is that what is on the periphery of one organization's mandate is at the centre of another's, meaning that time and resources can be committed to valuable KT activities.


* For further information about the Healthy Balance Research Program, including publications, see their website.

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The Women's Health Surveillance Report: Translating research to policy


Marie DesMeules, Public Health Agency of Canada
Claudia Lagacé, Public Health Agency of Canada
Donna Stewart, University of Toronto and University Health Network
Arminée Kazanjian, University of British Columbia
Heather Maclean, Centre for Research in Women's Health
Bilkis Vissandjée, Université de Montréal

The Women's Health Surveillance Report (WHSR) was a multi-sectoral initiative aimed at making a significant contribution to the understanding of gender-related health disparities in important areas of women's health. The WHSR represented a significant knowledge translation effort, involving an interdisciplinary systematic review of existing research, the development of recommendations for improving health surveillance activities and setting policy for women's health priorities and the use of a variety of dissemination strategies to reach diverse audiences. Significant uptake of the report's findings and recommendations, by practitioners, policy makers, researchers and the general public, was achieved.

Background


In 1999, the final report of the Advisory Committee on Women's Health Surveillance highlighted the need for enhanced analysis of gender as a determinant of health in national health surveillance.1 This provided the starting point for the Women's Health Surveillance Report: A Multi-dimensional Look at the Health of Canadian Women (WHSR), which aimed to make a significant contribution to the understanding of gender-related health disparities with respect to determinants of health, physical and psychological health status and the use of health services.

The purpose of the WHSR was to determine the extent to which currently available data could be used to provide insights into women's health that account for their social and cultural roles and responsibilities. It also aimed to provide policy-relevant information on women's health for use by health practitioners, policy makers, public health officials, non-government organizations, advocacy groups and researchers, as well as to make this information available to the public. We used the findings obtained from large national surveys and databases of health information to explore sex and gender differences in the determinants of health, health behaviours and health outcomes. More than 30 chapters addressed a wide range of issues, including life and health expectancy, disability, chronic diseases, reproductive and sexual health and health-related behaviours. Longer-term goals of the initiative are to evaluate the actual use of the report for decision making in practice and in program and policy development, and to provide a basis for a more comprehensive women's health surveillance system in Canada.

The project was a collaborative effort between the Canadian Population Health Initiative (CPHI), Health Canada, CIHR, Statistics Canada, Status of Women Canada, the Centres of Excellence for Women's Health, university departments and experts and practitioners in women's health across Canada. International collaborators were also involved in the development and review of the report. Funding was provided by CPHI and Health Canada.

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The KT initiative


For the WHSR findings to influence policy and practice in women's health, it was necessary to involve as wide a variety of players as possible, both during the research itself and after finalization of the report.

A 14-member steering committee, composed of project partners and multi-sectoral women's health experts, was formed in the first year of project funding. An advisory meeting was held to decide on topics for the report and to select appropriate experts in women's health to conduct the research and write the chapters. The authors were drawn, on the whole, from academic, government, non-government and clinical practice settings across Canada. Each chapter was systematically peer reviewed and three external reviewers evaluated the entire document for overall approach, content and key messages.

In October 2002, once draft outlines and preliminary/sample data results were available for most chapters, we held an external consultation workshop with about forty women's health experts and key stakeholders to gather input on the approach being taken to prepare the WHSR and to elicit suggestions on how best to disseminate and promote awareness of it. Participants, who included medical and public health professionals working in women's health, non-government organizations, policy makers and many others, developed a number of helpful recommendations, many of which were used during the finalization and dissemination of the report.

Our news release highlighting the publication of the report ranked in the top ten accessed files for that day.

The WHSR was completed and released in 2003. We used a comprehensive dissemination strategy, including broad distribution of free printed copies across key national and international organizations; publication in BioMed Central,2 an open access, peer-reviewed journal publisher with a wide Internet audience; posting of the entire report on the Public Health Agency of Canada, Health Canada, and Canadian Institute for Health Information websites, as well as links from other partner organization websites; and wide media coverage, including publication of the main findings in Chatelaine, a national women's magazine. Our news release highlighting the publication of the report ranked in the top ten accessed files for that day. Collaborating practitioners also actively contributed to dissemination through the distribution of copies of the report in practice settings (e.g. women's health clinics) and through professional organizations.

One of the next steps in continuing the momentum for a sustainable national women's health surveillance system is to evaluate whether the report is a practical and useful tool for women's health policy and program development. Have the recommendations been accepted as valid and are they being acted on? After the active dissemination phase, we gave key stakeholders time to evaluate how the WHSR recommendations could be incorporated into their plans and activities. A survey of stakeholders is currently in the planning phase. We also hope to develop standards to assess whether implementation of the recommendations has the desired effects.

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Results of the KT experience


In the WHSR, we presented data from a variety of national administrative and survey databases to investigate sex and gender differences in important areas of women's health. For instance, investigation of the relationship between socioeconomic factors, multiple roles and women's mental health revealed that, irrespective of women's employment status, single mothers are more likely than partnered mothers to be poor and to experience financial stress and food insecurity.

The health topics covered in the WHSR were influenced by the 1998 recommendations of the Advisory Committee on Women's Health Surveillance. Although we acknowledged that political, social and economic forces are among the most important factors influencing health outcomes, it was not possible to do a comprehensive analysis of these social determinants of health using a gender perspective. This would require data from large follow-up studies designed to more appropriately measure economic and social factors influencing women's health, which are rare in Canada. Participants in the external consultation workshop pointed out that the report was mainly focused on disease and suggested that it be supplemented to make contextual and life issues the basis.

The WHSR findings have now been disseminated to a wide audience. Women's groups and organizations in Canada are making use of the information to continue their advocacy efforts around issues of concern (e.g. women and violence initiatives); those engaged in research are more aware of knowledge gaps to be addressed; and decision makers are in a better position to shape policy in ways that accord with identified needs. The report has stimulated the undertaking of similar efforts specifically targeted at Canadian Aboriginal women and women in the military, and was used by the Federation of Medical Women of Canada to frame the scientific agendas for their last two annual meetings.

The Honorable Carolyn Bennett, the Minister of State (Public Health), highlighted the WHSR as one of the important steps that Canada has achieved towards women’s equality in the area of health.

Shortly after the release of the report, Alberta's premier announced that a strategy would be developed to address the problem of women and violence. More recently, in her speech celebrating International Women's Week 2005, the Honorable Carolyn Bennett, the Minister of State (Public Health), highlighted the WHSR as one of the important steps that Canada has achieved towards women's equality in the area of health.

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Lessons learned


The interdisciplinary input used to develop the WHSR is essential to the policy development cycle of a sustainable women's health surveillance system. The external consultation provided us with many good ideas on the content, dissemination and use of the report. Some of these were taken up and others have been noted for future reports. For instance, there were suggestions for research on different women's health issues, but reliable data on those topics were not always available. It was also suggested that more consensus around a conceptual framework should have been obtained at the beginning of the research process to guide the choice of topics for the report.

While the collaborative and consultative processes employed in the preparation of the WHSR were invaluable, it was occasionally challenging to reconcile the intended quantitative/statistical approach to the WHSR—i.e. analyzing the available data and attempting to make recommendations on the basis of evidence of effectiveness—with the disciplines and expertise more often found in gender and health research, such as social sciences. In retrospect, there were further steps that could have been taken to prepare the authors, such as short training sessions in the appropriate methods and distribution of a "model chapter" for guidance.

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Conclusions and implications


The WHSR presented what is known and, as important, what is not known about many aspects of women's health, together with recommendations for future action. We envision an ongoing knowledge-to-policy cycle, where research and surveillance data guide the process of developing health policy. As a result, in turn, of new policies and their effects, decision makers will be in a position to point to fresh areas in need of surveillance and/or analysis.

The recommendations made in the report for enhancing women's health surveillance and for policy making will be used in the development of future reports; the collaborative networks among researchers, practitioners and policy makers will continue to be active and will be further expanded for evaluation purposes and planning of future activities; agreement will be sought on various conceptual framework approaches to guide the future selection and study of women's health issues; and a core set of gender-sensitive women's health indicators will be developed to monitor and report on progress towards improving women's health in Canada.


References

1 Advisory Committee on Women's Health Surveillance. 1999. Women's health surveillance: A Plan of Action for Health Canada. Ottawa, ON: Minister of Public Works and Government Services Canada.
2 DesMeules, M., D. Stewart, A. Kazanjian, H. Mclean, J. Payne, and B. Vissandjée. 2004. Women's Health Surveillance Report: A Multi-dimensional Look at the Health of Canadian women. BMC Women's Health 4 (Suppl 1): S1-S36.

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The Globalization, Gender and Health Project


Heather Maclean, Centre for Research in Women's Health
Suzanne Sicchia, Centre for Research in Women's Health
Miriam Stewart, Scientific Director, CIHR Institute of Gender and Health
Elizabeth McGregor, former Associate Director, CIHR Institute of Gender and Health
Gloria Bonder, UNESCO Chair in Women, Science, and Technology in Latin America
Zo Randriamaro, Consultant

The Globalization, Gender and Health Project was a large-scale exercise in international research collaboration. Charged with identifying a set of issues at the intersect of globalization, gender and health for future research and training priorities, the team learnt some important lessons on working in international partnerships. Building trust among a diversity of partners from both the developed and developing world was challenging, as was finding broad consensus on priority issues. The payoff has been the establishment of lasting knowledge networks, which continue to support the original research agenda.

Background


In 2002, CIHR's Institute of Gender and Health (IGH), as part of a larger initiative, invited the Centre for Research in Women's Health (CRWH) at the University of Toronto to prepare a background paper on issues at the intersect of globalization, gender and health. The major goals in developing this paper—the Globalization, Gender and Health project—were to engage policy makers, scholars and activists in both developed and developing countries in setting out key issues to help shape a gender and global health research and training agenda and to identify opportunities for future research and partnership.

The project involved many partners, including the National Institutes of Health, the Canadian Coalition for Global Health Research, Harvard University, Yale University, McMaster University, the University of Toronto, UNESCO, the United Nations Development Fund for Women (UNIFEM) and the World Bank. A substantial part of the project involved consultations with collaborators in the developing world. The large-scale integration of expertise from international stakeholders made this project unique and also provided important lessons on working collaboratively in, and structures for, international partnerships—two crucial concepts for effective knowledge translation (KT) in global health.

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The KT initiative


We engaged stakeholders by piggybacking focus groups and meetings with existing international forums.

Our research began with an extensive literature review of relevant issues, resulting in the drafting of brief issue papers on possible priority topics. These were complemented by an international call for topic-related case studies, with submissions from scholars and service providers worldwide. We then held a series of meetings and regional consultations with stakeholders, which aimed to capture the perspectives of a broad cross-section of scholars, policy makers and government and non-governmental organization (NGO) representatives.

The project design was participatory and iterative. We used snowball sampling to identify individuals from different countries who specialized in relevant areas of research and policy, and we engaged stakeholders by piggybacking focus groups and meetings with existing international forums. We also created small, issue-specific think tanks to shape the research process and organized regional symposia with scholars, health professionals, policy makers and donor agencies to learn about region-specific issues. To ensure genuine participation of stakeholders from developing countries, our regional partners led online forums tailored to issues in Latin America and Africa. Each opportunity for input allowed us to refine our background paper and gave us issues to address at future discussions.

Partner agencies took the lead on different components of the project, in addition to providing feedback on the development of the background paper. Partners from developing countries affiliated with UNIFEM and UNESCO designed, implemented and managed the regional consultations. Others participated in planning sessions, provided in-kind technical support, coordinated regional dialogues, organized consultations in tandem with existing international forums and endorsed the project to raise its profile and capture the attention of other potential partners. The IGH Institute Advisory Board served as the steering committee for the entire project.

Extensive use of the Internet, e-mail and teleconferencing, together with face-to-face meetings and a series of symposia, were used to facilitate global dialogue, disseminate study findings, share funding announcements and encourage future collaboration among partner agencies and participants.

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Results of the KT initiative


Overall, the project engaged 250 researchers, practitioners and policy makers representing 80 agencies working in gender and global health in more than 30 countries.

We identified eight priority issues (food security and nutrition, HIV/AIDS, occupational health, reproductive health, mental health, addictions, violence and infectious disease) and four special topics (global public goods, migration and health, global health governance and the health of the world's indigenous peoples) at the intersect of globalization, gender and health. Issue papers on each of these topics, which can be used as tools to shape research, training and policy agendas, were included in the background paper, which was widely disseminated in English, Spanish, and French. Other project deliverables, such as a series of articles, papers and presentations on the results of the project, have been circulated via the academic, NGO and government networks of our many partner agencies.

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Lessons learned


Over the course of the many collaborations that supported the project, we have learned important lessons about building partnerships and the process of collaboration in global health initiatives.

Fostering trust

Building trust was one of our biggest challenges. While having the support of partners such as the World Bank increased some collaborators' confidence that our findings would inform policy, others were wary of participating in an initiative linked to an agency they viewed as an advocate of unjust forms of globalization. Also, some partners from developing countries felt used by partners from developed countries in the past and so were reluctant to commit their time and expertise to a project sponsored by North American funding agencies. Similar reservations were voiced by some partners from high-income countries who suggested that these kinds of projects went nowhere, eating up resources and making no real difference.

Getting past these barriers required a real effort to listen to and understand the concerns of potential partners and participants. It was important to keep stakeholders informed and allow them to choose their own degree of involvement, but it required a considerable amount of time to keep all 250 collaborators updated on new project developments. We also learned that people who are fully engaged in one stage of the project can feel used if their input is not consistently sought throughout the process. Delays in project deliverables were another potential source of frustration. Maintaining trust is an extremely time-consuming and costly process, and one that continues even now that the project is complete.

Valuing diversity

Definitions of globalization and its impact on health are contested topics and views are polarized. Ideological divisions between stakeholders were deepened by a competitive territoriality over whose knowledge was authoritative. Some partners directly challenged the legitimacy of the knowledge and contributions of others, arguing that they were "too new to global health research" to contribute to a critical understanding of the issues, or questioning the legitimacy of their perspectives. This divisive and competitive climate made building trust and consensus difficult. While we have not found a definitive solution to these problems, helpful strategies included adopting the United Nations definitions of health, gender and globalization, and framing the project in terms of global commitments like the Millennium Development Goals.

Building consensus

With priorities varying tremendously across and even within regions, finding consensus proved to be a time-consuming and difficult task.

Given the breadth of the project's findings, the funders requested that the research team find consensus on a handful of key issues at the intersect of globalization, gender and health from which recommendations for future research and training could emerge. However, with priorities varying tremendously across and even within regions, finding consensus proved to be a time-consuming and difficult task. Arriving at a core list of issues and recommendations that all partners agreed on also meant that ideas some felt passionately about were lost. Ultimately all members had to compromise. The list of priority issues that emerged was deliberately broad to accommodate as many contributions and as much regional diversity as possible.

Use of technologies

In order to engage international stakeholders, the project relied heavily on information communication technologies (ICTs), including web-based forums, online volunteers,* e-mail, electronic resources and listservs. Using ICTs cost significantly less than the corresponding amount of travel and long-distance phone calls. However, our reliance on ICTs also limited the individuals and agencies that could participate in this initiative, especially colleagues in Africa, where access and infrastructure issues persist. At times, ICTs also posed problems when communications were multilingual.

Reciprocity

A major payoff from the time and energy we put into building trust is the informal support and knowledge networks that this project created among our international collaborators. Regular correspondence among collaborators about funding opportunities, international events and useful resources continues even now that our consultations have ended. The level of collegiality and rapport and the degree of trust that has been built is evidenced by the fact that the research team is regularly approached by collaborators to review grant applications, comment on research proposals and identify potential funding sources or journals or forums where collaborators can present their work. It is important to note that this flow of information is two-way: partners living in industrialized countries are equally likely to seek the expertise and support of colleagues from developing countries.

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Conclusions and implications


The success of a partnership or collaboration will always depend to some degree on the mix of personalities involved and on the flexibility of funding agencies.

While some of the lessons we have learned about international collaboration are generalizable, successful collaboration cannot be completely reduced to a single set of standardized "tools". Rather, as one of our international partners has pointed out, the success of a partnership or collaboration will always depend to some degree on the mix of personalities involved and on the flexibility of funding agencies.

Nonetheless, we hope what we have learned about the time and energy involved in building strong international collaboration helps others conducting research and KT in global health. KT in this area involves a constant balancing of interests, cultures and values. Without attention to the importance of trust, respecting diversity, use of appropriate technologies and ways of giving back, this balance can be destroyed.


* The United Nations online volunteering initiative, NetAid, allowed us to work with two exceptional volunteers: George Gopal in Kenya and Sahar Saquib in Afghanistan. This virtual experience was so positive that, in 2003, the CRWH research team successfully nominated one of our volunteers, George Gopal, for the United Nations Online Volunteer of the Year Award.

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