Research participation, trust, and fair compensation among people living with and without HIV in Florida

ABSTRACT

Florida has the second highest number of newly diagnosed cases of HIV in the United States. Sociodemographic representation that is reflective of the population is essential in developing evidence based interventions to improve HIV outcomes and reduce disparities. Understanding HIV research trial participation, preferences for types of research, and fair compensation for research will further our understanding of someone’s decision to participate in research. The purpose of this analysis was to identify differences in prior research participation, trust, interests in types of research, and fair compensation between people living with HIV and without HIV in North Central Florida. In this sample of 8340 people interviewed in the community about their health concerns and research participation, 156 reported living with HIV. Only 20.5% of people with HIV reported past participation in research, however 94.2% said they were interested in future research participation. While people with HIV were slightly more interested in higher risk/low convenience research, there were no statistically significant differences in preferences for types of research between those with and without HIV. People with HIV reported no difference in the amount they would request for fair compensation ($78.4 USD) compared with those without HIV ($72.2 USD, p = 0.69). Community members are interested in participating in research, although few had previously participated. Improving our understanding of research study participation will help improve recruitment efforts and draw stronger conclusions regarding the effectiveness of interventions, as well as enhance implementation of these interventions.

KEYWORDS:

• Research participation
• HIV
• community engagement
• compensation
• trust

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

Grant funding provided to Dr. Linda Cottler by the National Institutes of Health/National Institute on Drug Abuse [grant number DA027951] and the Clinical and Translational Science Institute and the University of Florida College of Public Health & Health Professions and College of Medicine. Clinical and Translational Science Institute is supported in part by the National Institutes of Health/National Center for Advancing Translational Sciences Clinical and Translational Science Award to the University of Florida [grant number UL1 TR001427].