MD Magazine Feature - "Crowdsourcing Brings Researchers and the Community Together to Cure HIV"

Misinformation about clinical research, mistrust between scientists and the community, and HIV-related stigma often impede efforts to find an HIV cure. HIV cure research is increasingly focused on achieving sustainable, drug-free viral suppression and eliminating latent virus from the body. However, many HIV cure research studies have high participant risks, such as potentially adverse side effects from experimental therapies and viral rebound from treatment interruption procedures. These potential participant risks increase the importance of community engagement.

It is important to engage community members in the early stages of HIV cure research to get a better sense of their concerns, priorities, and suggestions on ways to improve the roll-out of clinical trials. To date, research engagement to address these barriers has been minimal, designed from the top-down, and shown to be only moderately effective. The 2BeatHIV project conducted a series of crowdsourcing contests and in-person engagement events to better understand public perspectives about HIV cure research from the bottom-up.
 

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Allison Mathews