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Community Engagement in clinical trials Projet Ubuzima experience By Marie Michèle UMULISA

Community Engagement in clinical trials Projet Ubuzima experience By Marie Michèle UMULISA Community Outreach & Recruitment Manager, Projet Ubuzima. Presentation outline. Why do community engagement? Project Ubuzima Community outreach group and partners

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Community Engagement in clinical trials Projet Ubuzima experience By Marie Michèle UMULISA

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  1. Community Engagement in clinical trials Projet Ubuzima experience By Marie Michèle UMULISA Community Outreach & Recruitment Manager, Projet Ubuzima

  2. Presentation outline • Why do community engagement? • Project Ubuzima • Community outreach group and partners • Participant recruitment and retention • Challenges and achievements • Way forward

  3. Why do community engagement? • Build trust in the community around trials • Provide best information possible to all stakeholders and potential study participants • Build research literacy and support for microbicide studies, participants, future access to product • Educate / inform / update / acknowledge

  4. Projet Ubuzima • Non-profit organization established 2004 • Objective to reduce spread of HIV/AIDS • Completed HIV incidence study in Kigali • 800 sex workers - one time HIV test • 400 cohort participants - followed up for 1 year • Additional 1250 women - recruited through VCTs • 13 community advisory groups and 8 mobilizers identified via NGOs and local administrators

  5. Objectives of community outreach • Encourage and facilitate community support and participation in Projet Ubuzima activities • Strategically disseminate information about microbicide products in communities • Assess issues and develop strategies related to the acceptability of vaginal microbicides • Maximize recruitment and retention of study participants

  6. The community outreach group • Well-respected persons from the community identified and briefed (local church leaders, administrators, women’s rights advocates, etc.) • Community Advisory Group (CAG) formed with representatives from 6 grassroots institutions, plus traditional healers, former study participants • Community Mobilizers come from the local administrative entity - UMUDUGUDU (village)

  7. Training for CAG members • Clinical research and microbicide trials • Good Clinical Practice (GCP) • Research ethics • HIV/AIDS • STIs and family planning

  8. Role of community mobilizers • Help with recruitment and follow up of participants • Provide information and advice about rumors, misconceptions, concerns from community • Organize meetings in the community as needed

  9. Information exchange PROJET UBUZIMA CLOs Community Advisory Group Local Authorities Community Health Workers PARTICIPANTS MOBILIZERS

  10. Participant recruitment & retention • Good retention & adherence begins with quality recruitment • Pre-selection of participants done by community outreach team and mobilizers • Study procedures / visits conducted by PU staff • Participants who miss appointments are contacted by the outreach team and mobilizers to discuss reasons

  11. Challenges • Rotation of local authorities • Need more qualified trainers on research tools, methodologies and activities • Communities often suspicious about the research - more education needed • Fear of speculum examinations • Reluctance to have blood drawn frequently • Socio-cultural factors, taboos, misconceptions

  12. Achievements • Successful recruitment for HIV incidence studies • High retention rate of approximately 96% • Strong collaboration and partnership at all levels of local government and civil society organizations • Excellent collaboration with the media in disseminating information to the community • High-level symposium on microbicides raised awareness among policy makers & opinion leaders • Good collaboration with other research programs

  13. Way forward • Microbicide clinical studies planned in 2009: IPM 014 (gel) and IPM 015 (ring) • Goal to improve community engagement, understanding and participation in research • Develop innovative strategies • Educate communities on the importance of research • Continue training of CAG and mobilizers • Increase national and international contacts and exchange of best practices

  14. Acknowledgments • Projet Ubuzima colleagues • Our study participants • Rwanda Ministry of Health • CAG members • Community mobilizers • Local authorities • Media

  15. Questions?

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