Community Engagement in HIV Cure Research: From Research to Social Entrepreneurship

Transcription

1 Community Engagement in HIV Cure Research: From Research to Social Entrepreneurship Allison Mathews, PhD University of North Carolina at Chapel Hill Institute for Global Health and Infectious Disease Department of Social Medicine

2 01 Background 02 Crowdsourcing Engagement Tips By Stage 03 Discussion 04 Scaling to Social Businesses

3 Background Long history of mistrust between community and scientists for clinical research

4 Lessons Learned from HIV Prevention Trials Majority of stakeholder engagement developed from top down Early shutdown of PrEP trials: Cambodia, Cameroon, Nigeria Step Study aftermath of community mistrust: North America, the Caribbean, South America, and Australia

5 What makes HIV cure research ethically challenging? Social value of HIV cure What does cure mean? Desire for cure among many people living with HIV Existing effective treatment Highly complex research Often involving healthy volunteers Negligible clinical benefits Significant and/or unknown risks

6 Crowdsourcing as Bottom-Up Approach The process of engaging the public to help solve a problem.

7 Creative Community Events Crowdsourcing Mass Media Critical Convers ation Innovative HIV Clinical Engagement

8 Crowdsourcing Contest Process Identify Contest Theme Develop Community + Business Partnerships Open Call for Entries Recruitment Prize Incentives Expert Evaluation & Judge Contest Entries Celebrate Finalists Evaluate Engagement

9 Identify Contest Theme What Does HIV Cure Mean To You? Collective Approach Address HIV cure myths through critical dialogue Use Creative Contributions to encourage participation Art Music Technology Social media

10

11 Contest Recruitment Hip Hop Concert and Community Forum on HIV Cure Conspiracy Theories

12

13

14 Lessons Learned & Conclusions Community members are willing to participate in a crowdsourcing contest focused on HIV cure research. Meeting people in non-traditional spaces for community events is beneficial for engagement. Partnering with other local organizations/business increases community outreach. Online and in-person events are both important for successful crowdsourcing activities to engage communities Crowdsourcing is effective at producing culturally relevant material for HIV cure research engagement

15 Extension from Research to Social Enterprise Market Research Online Engagement Analytics Data-Informed Problem Solving Implementation & Evaluation Research-Based Outcomes Knowledge + Grants Social Venture-Based Outcomes P rofit + Impact

16 Spawning Social Business

17

18 Thank you! 2BeatHIV Team Samantha Farley (RA) Kimberly Knight (GA) Hailey Mason (RA) Community Volunteers Durham Community Members 2BeatHIV Community Partners SearcHIV Team Joseph Tucker (PI) Stuart Rennie (PI) Adam Gilbertson (Postdoc) Suzanne Day (Postdoc) Lisa Hightow-Weidman (Co-PI) Kate Muessig (Co-PI) Liz Kelly (former GA)

19 Stigma and HIV testing What are the worries people feel about HIV testing? How do we make it easier for people to use self-testing kits?

20 Research Methods Formative focus groups (n=9, 54 participants in urban and rural areas of North Carolina, 97% African American, YO) listserv recruitment Digital Transcription Deductive and Axial Coding using MAXQDA

21 Preliminary Focus Group Findings Confidentiality and Stigma Concerns with Public, Public-Private, and Private Testing Locations based on Rural vs Urban Locale Suggested Solutions: Meet People Where They Are Partner with Popular Opinion Leaders & Respected Organizations Make it fun and not necessarily connected to traditional HIV testing sites, especially in rural areas Encourage social support and proper education about self-testing kits & treatment options

22 323 Contest Submissions 95% African American, Mean Age: 37 years old

23 1st Place Finalist 2nd Contest to Crowdsource Branding for Pop-Up Booth to Promote Proper Use of HIV Self-testing Kits