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

Abstract

ABSTRACTFlorida 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.