43 - HIV Cure-related Study Vignettes Capture Perspectives on Ethical Payment Amounts

Background: Cash payments are common in research among people with HIV (PWH), including research towards finding a cure. Researchers propose payment amounts in grant applications and prior to IRB review, oftentimes without consulting prospective participants. Consequently, payment amounts are not data-driven and may lead to amounts that are inappropriately low or high.

Methods: In collaboration with a national community advisory board, and based on results from focus groups, interviews, and a conjoint analysis exercise, we created hypothetical HIV cure research vignettes including 6 factors with 2–3 possible levels per factor: A=comorbidity (arthritis/mild depression/heart disease), B=first in humans (yes/no), C=invasiveness (low/moderate/high), D=long-term risks (yes/no), E=time burden (no/some/significant impact on daily activities), and F=ancillary care (yes/no). In 2022, we collected data from 15 participants representing 3 different stakeholder groups (5 PWH, 5 IRB members, 5 researchers) who received a $50 incentive. Each participant read up to 24 vignettes, half of which were identical across participants. For each vignette, respondents suggested a recommended range of appropriate payment amounts in U.S. dollars. Descriptive statistics (min, max, quartiles, median, mean) were calculated for the vignettes and specific to each participant type. Boxplots were created to illustrate maximum and minimum payment amounts with dollar amounts on a log scale because data were often skewed upward.

Results: Participants’ mean age was 48 years. The majority were women (53%) and White (67%). Two-thirds (67%) considered payment a benefit of research. Payment data for 192 vignettes showed greater variability between participants than between vignettes. The average maximum proposed payment amount among all participants for all vignettes was $2042 ($843 PWH, $3980 IRB, $1336 researchers), while the average minimum proposed payment amount was $1020 ($681 PWH, $1614 IRB, $776 researchers). In a multivariable generalized estimating equations (GEE) analysis of the geometric mean (calculated for each pair of reported maximum and minimum payment amounts), factors B (first in humans), C (invasiveness), D (long-term risks), and E (time burden) were all significantly associated (p < 0.05) with proposed payment amounts, while A (comorbidity) and F (ancillary care) were not.

Limitations: The study was limited to 15 non-randomly selected participants who may not represent their stakeholder groups on a national scale. We focused on HIV cure research in our vignettes, which may not be applicable to all other clinical HIV research. Two of the factors selected for the vignettes were not associated with payment amounts, despite the factors being generated by a community advisory board comprised of representatives from all three stakeholder groups.

Discussion: Stakeholders in the research process in our study have different perceptions of appropriate payment to HIV cure research study participants and different study factors had varying impacts on payment decision-making. Findings can help drive discussions of what is fair payment in research with a focus on avoiding exploitation versus concern over undue influence, particularly in IRB review given higher proposed payment amounts among IRB members compared to researchers and PWH in our study. Payment decision-making is complex, and future research should allow for input from additional stakeholders and integrate additional study factors to address this complication.