44 - Motivations to Participate in HIV Biomedical Research: Findings from Focus Groups with People Living with HIV in the United States

Background: Providing payment for participation in HIV biomedical research is common practice. Nonetheless, we lack understanding of how payment and other factors influence the decision to participate. We assessed perceptions of research payment and tangible and intangible motivators to participate in clinical research studies among people living with HIV (PLWH).

Methods: In 2022, PLWH participated in focus groups about the impact of incentives on clinical trial participation. Our 12-member Community Advisory Board (comprised of PLWH, ethics committee members, and HIV researchers) helped develop the informed consent and focus group questions to ensure participant understanding. Following informed consent, study participants completed a demographic survey and 90-minute virtual focus group. Focus groups assessed participants’ perceptions of incentives, as well as tangible and intangible motivations for research participation. Participants received $25 USD. Recorded focus groups were transcribed, preliminarily coded using thematic analysis, and then systematically analyzed using a codebook.

Results: Participants (N=55) were 23–71-years-old (mean=57.4, SD=10.7); 25.5% were female and 49.1% non-White. Participants reported receiving $0–$6,000 USD payment in previous research studies.
Perceptions of research incentives were that some participants viewed access to efficacious interventions post-study and/or comprehensive healthcare received while participating in research studies as incentives. All believed participants should not incur out-of-pocket expenses. Most stated cash as their preferred form of payment for research participation, but several wished studies offered different payment options to participants (e.g. Visa gift card, ClinCard).
Intangible motivations included memorializing a loved one who had died from AIDS and to contribute to advancements that make HIV a more manageable, and perhaps one day curable, condition.
Barriers to participation included HIV-related stigma, lack of trust in the scientific community due to historical unethical research conduct involving underrepresented and minoritized community members, and transportation challenges.

Limitations: One limitation of our study was that virtual study participation may have excluded individuals with low technology literacy and those without internet access.

Discussion: Increased consideration of research incentives and their effects on participant decision making is needed. Study recruitment and retention efforts may benefit by giving participants options for how they are paid. Our findings can guide future ethical incentive decision-making practices in clinical research.