Alberta School Boards Association Keynote on Meaningful Student Involvement
Meaningful Involvement of Women Living with HIV: Women-Specific Community-Based Research Model
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Washington D.C., USA, 22-27 July 2012 www.aids2012.org Meaningful Involvement of Women Living with HIV: Women- Specific Community-Based Research Model Mona Loutfy, MD, FRCPC, MPH Infectious Diseases Specialist Women’s College Hospital University of Toronto Toronto, ON, CANADA
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Meaningful Involvement of Women Living with HIV: Women-Specific Community-Based Research Model. Mona Loutfy , MD, FRCPC, MPH Infectious Diseases Specialist Women’s College Hospital University of Toronto Toronto, ON , CANADA. No conflicts related to this work. Mona Loutfy. - PowerPoint PPT Presentation
Transcript of Meaningful Involvement of Women Living with HIV: Women-Specific Community-Based Research Model
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Meaningful Involvement of Women Living with HIV:
Women-Specific Community-Based Research Model
Mona Loutfy, MD, FRCPC, MPHInfectious Diseases Specialist
Women’s College HospitalUniversity of Toronto
Toronto, ON, CANADA
Washington D.C., USA, 22-27 July 2012www.aids2012.org
• No conflicts related to this work
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Mona Loutfy
• Infectious Diseases Specialist - Toronto, ON, Canada since 2001– 80% women living with HIV
• Clinical Researcher at Women’s College Hospital
• Interested – topics most important to my patients
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Women and HIV Research Program
• Founded at Women’s College Research Institute in 2006
• AIM: carry out research deemed to be most important to women living with HIV aimed to optimize their wellbeing– With women living with HIV as partners
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Women and HIV Research Program
• TOPICS: – Drug levels (2005)– Lipodystrophy (2006)– Pregnancy planning/parenting (2007)– Stigma/discrimination (2008)– Sexual health (2011)– Access and retention to care (2011)– Needs of Positive Aboriginal Women (2011)
Washington D.C., USA, 22-27 July 2012www.aids2012.org
The Difference Between Community Based Research and Academic Research*
Guiding Principles Community-Based Research Traditional Academic Research
What is the purpose of the research?
To provide the community with the tools and information
necessary to enact change
To contribute to the body of knowledge on a given topic
Who is the research intended to serve?
The local community and the academic community The academic community
Whose knowledge counts?
That of both community members and academic
expertsAcademic experts
Who determines what topics are
researched?Members of the local
community
Funders interests, academic interests, professional interests, and personal
interests
(University of Michigan Edward Ginsberg Center for Community Service and Learning, http://quod.lib.umich.edu/m/mjcsl)
Edward Ginsberg Center for Community Service and Learning provides a distinction between community and academic research:
*Thank you to Dr. Saara Greene
Washington D.C., USA, 22-27 July 2012www.aids2012.org
The Difference Between Community Based Research and Academic Research*
Guiding Principles Community-Based Research
Traditional Academic Research
What is the rationale for choosing the research
methodology?Community empowerment
and mutual learningAcademic conventions;
the pursuit of "truth" and "objectivity"
Who controls the research process?
Community members and the researcher Researcher
Who has ownership over the results of the
research?Community members and
the researcher Researcher
What aspect of research is emphasized? Process Outcomes
(University of Michigan Edward Ginsberg Center for Community Service and Learning, http://quod.lib.umich.edu/m/mjcsl)
*Thank you to Dr. Saara Greene
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Example: CHIWOS• Canadian HIV Women’s Sexual and Reproductive Health Cohort
Study– Recruit 1250 women living with HIV from BC, ON, QC and
follow prospectively– 4 co-PIs, 29 co-investigators and 25 collaborators– Strong community partnership– Funded by CIHR in 2011
• Research goal:– To assess barriers to and facilitators of women-centred
HIV/AIDS services use among women living with HIV– To assess the impact of such patterns of use on sexual,
reproductive, mental and women’s health outcomes
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Study Team Structure
Principal InvestigatorsMona Loutfy, Alexandra de Pokomandy,
Bob Hogg, Angela Kaida
Quebec Core Research Team
Ontario Core Research Team
British Columbia Core Research Team
Quebec Community Advisory Board
Ontario Community Advisory Board
British Columbia Community
Advisory Board
National Steering Com
mitt
ee
National Research Team
National Core Research Team
24 National Survey Development Working
Groups
Sampling, Recruitment and Data Management
Committee
Knowledge Transfer and Exchange (KTE) Working
Group
CHIWOS Aboriginal Advisory Board: Prioritizing the Health Needs of Positive Aboriginal
Women (CAAB-PAW)
National M
anagement
Team
Washington D.C., USA, 22-27 July 2012www.aids2012.org
CHIWOS Guiding Frameworks• Critical Feminism
• Anti-Oppression, Intersectionality, and Social Justice
• Social Determinants of Health
• Community-Based Research
• GIPA (Greater Involvement of People living with HIV/AIDS) -> Meaningful Involvement of Women living with HIV/AIDS (MIWA)
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Operationalizing CBR & MIWA• Ensure women living with HIV from each province on the
National Management, Steering Committee & other Working Groups
– Representatives of stakeholder communities who have traditionally been marginalized and silenced
• Community Advisory Boards in each province
• Unique definition of “Community”
• Peer Research Associates (PRAs) hired as partners to guide the study, and facilitate the focus groups
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Operationalizing CBR & MIWA• Created a “What is CHIWOS?” presentation with
DEFINITIONS OF GUIDING FRAMEWORK
– All involved in CHIWOS trained
• Vision, mission & mandate developed facilitated by women living with HIV
• Women living with HIV integral in developing the questionnaire & methods
• Flexible, understanding, iterative, ethical … take the time
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Operationalizing CBR & MIWA• Group-specific Advisory Boards to CHIWOS
– Positive Aboriginal Women in Canada came to us to ensure their voice and needs were being addressed
• GOAL: Address study issues pertinent to specific groups while recognizing women’s multiple and overlapping identities, issues and concerns
• CHIWOS Aboriginal Advisory Board: Prioritizing the Needs of Positive Aboriginal Women – formed– Aboriginal Training for Researchers & Coordinators– Planning Grant received for a Retreat
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Summary Of MIWA & CBR• Improved our research & made it more impactful• Takes time & is a learning process; Is FUN
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Acknowledgements• Thank you to CHIWOS’s co-PIs, and the entire national
core research team• Particular thanks to Shari Margolese, Allie Carter, Nadia
O’Brien and Kira Abelshon for their hard work and support• Thank you to Johanna Lewis for tremendous work on
drafting• Also to the PRAs, Steering Committee members and all the
community partners involved in this project• Thank you to the Research Team, CAB members and
collaborators
Washington D.C., USA, 22-27 July 2012www.aids2012.org
Acknowledgements
Special Thanks To Our Community Partners!
