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Meaningful Involvement of Women Living with HIV: Women-Specific Community-Based Research Model

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.

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Meaningful Involvement of Women Living with HIV: Women-Specific Community-Based Research Model

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  1. 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

  2. No conflicts related to this work

  3. 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

  4. 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

  5. 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)

  6. The Difference Between Community Based Research and Academic Research* Edward Ginsberg Center for Community Service and Learning provides a distinction between community and academic research: (University of Michigan Edward Ginsberg Center for Community Service and Learning, http://quod.lib.umich.edu/m/mjcsl) *Thank you to Dr. Saara Greene

  7. The Difference Between Community Based Research and Academic Research* (University of Michigan Edward Ginsberg Center for Community Service and Learning, http://quod.lib.umich.edu/m/mjcsl) *Thank you to Dr. Saara Greene

  8. 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

  9. Study Team Structure Quebec Community Advisory Board Ontario Community Advisory Board British Columbia Community Advisory Board Quebec Core Research Team Ontario Core Research Team British Columbia Core Research Team 24 National Survey Development Working Groups Sampling, Recruitment and Data Management Committee Principal Investigators Mona Loutfy, Alexandra de Pokomandy, Bob Hogg, Angela Kaida National Management Team National Steering Committee National Core Research Team National Research Team Knowledge Transfer and Exchange (KTE) Working Group CHIWOS Aboriginal Advisory Board: Prioritizing the Health Needs of Positive Aboriginal Women (CAAB-PAW)

  10. 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)

  11. 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

  12. 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

  13. 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

  14. Summary Of MIWA & CBR • Improved our research & made it more impactful • Takes time & is a learning process; Is FUN

  15. 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

  16. Acknowledgements Special Thanks To Our Community Partners!

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