Background: Meaningful community engagement demands basic scientific knowledge and principles of engagement. We investigated the attitudes and beliefs of people living with HIV toward HIV cure research. The Good Participatory Practice guidelines for HIV Biomedical Prevention (GPP) is a set of recommendations that outlines practices to engage a broad set of stakeholders in the research process.
Methods: We completed a cross-sectional survey with 400 American adults living with HIV (22% females; 77% males; < 1% transgender) connected to HIV cure research networks in 2015 to assess basic knowledge and attitudes around HIV cure research. The sample was ethnically diverse with broad geographical representation. We also conducted extensive key informant interviews with 36 people living with HIV, researchers, bioethicists and regulators to discuss the role of community in HIV cure research.
Results: Of the survey respondents, 96% [95% CI: 91, 100%]; n = 399 were generally interested in HIV cure research and 95% [90, 100%]; n = 399 were concerned with medical issues. Nonetheless, a proportion of respondents - 8% [3, 13%]; n = 350 thought a cure for HIV was already in existence. Study participants agreed that more information around HIV cure research was needed at a basic level of understanding given the complexity of the science, particularly about the various risks of HIV cure research modalities under investigation. Furthermore, the results revealed a disconnect between this stakeholder group and the research process, highlighting the need for a comprehensive and robust stakeholder engagement plan around HIV cure research in the United States.
Conclusions: Given that a subset of HIV-positive survey respondents thought a cure for HIV existed but wasn''t currently available to everyone, a comprehensive education and stakeholder engagement plan is needed. Engaging people living with HIV early in the research process using Good Participatory Principles can help lessen potential participants'' misconceptions and fears and lead to greater acceptance and support for HIV cure research. Additional formative research is needed with different stakeholder groups, including physicians, religious leaders and community educators.