Crowdsourcing contests to facilitate community engagement in HIV cure research: A qualitative evaluation of facilitators and barriers of participation

Abstract

Background: As HIV cure research advances, there is an increasing need for community engagement in health research, especially in low- and middle-income countries with ongoing clinical trials. Crowdsourcing contests provide an innovative bottom-up way to solicit community feedback on clinical trials in order to enhance community engagement. The objective of this study was to identify facilitators and barriers to participating in crowdsourcing contests about HIV cure research in a city with ongoing HIV cure clinical trials. Methods: We conducted in-depth interviews to evaluate facilitators and barriers to participating in crowdsourcing contests in Guangzhou, China. Contests included the following activities: organizing a call for entries, promoting the call, evaluating entries, celebrating exceptional entries, and sharing entries. We interviewed 31 individuals, including nine HIV cure clinical trial participants, 17 contest participants, and five contest organizers. Our sample included men who have sex with men (20), people living with HIV (14), and people who inject drugs (5). We audio-recorded, transcribed, and thematically analyzed the data using inductive and deductive coding techniques. Results: Facilitators of crowdsourcing contest participation included responsiveness to lived experiences, strong community interest in HIV research, and community trust in medical professionals and related groups. Contests had more participants if they responded to the lived experiences, challenges, and opportunities of living with HIV in China. Strong community interest in HIV research helped to drive the formulation and execution of HIV cure contests, building support and momentum for these activities. Finally, participant trust in medical professionals and related groups (community-based organizations and contest organizers) further strengthened the ties between community members and researchers. Barriers to participating in crowdsourcing contests included persistent HIV stigma and myths about HIV. Stigma associated with discussing HIV made promotion difficult in certain contexts (e.g., city squares and schools). Myths and misperceptions about HIV science confused participants. Conclusions: Our data identified facilitators and barriers of participation in HIV cure crowdsourcing contests in China. Our findings could complement existing HIV community engagement strategies and help to design HIV contests for community engagement in other settings, particularly in low- and middle-income countries.