Variations in interest to participate in health research: Insights from the Florida Statewide Registry for Aging Studies (FSRAS)

There is low participation in health research, particularly among racial and ethnically diverse groups. The persistent barriers contributing to low participation include mistrust, lack of information, cultural differences, and access issues. An understanding of the factors influencing willingness to participate across various types of research is important to improving participation and ensuring diverse, representative participation in health research.

The study utilized data collected through the Florida Statewide Registry for Aging Studies (FSRAS), which included 481 participants aged 25 years and older. We performed descriptive statistics, bivariate analysis, and multivariate logistic regression. The primary outcome variable was interest in participating in a general health research study, as well as specific studies, including taking medication, providing a blood sample, undergoing overnight hospital stays, participating in a genetic study, accessing medical records, and using medical equipment.

The final analysis included 481 FSRAS participants, predominantly female (78 %), Black/African American (52 %), aged 25-64 years (78 %), and college-educated (57 %). Most resided in South Florida (53 %) and were U.S.-born (61 %). A majority of participants (82 %) reported good/excellent health. Trust in research was generally high or medium (88 %). In contrast, only 14 % reported cultural beliefs influenced willingness to participate. Participants with low trust in research were significantly less likely to express interest in general research participation (OR=0.188, 95 % CI=0.068-0.523), studies involving medical records (OR=0.366, 95 % CI=0.151-0.890), and medication use (OR=0.199, 95 % CI=0.015-0.972). Those with medium trust were less likely to express interest in studies involving blood samples (OR=0.589, 95 % CI=0.364-0.955), genetic samples (OR=0.616, 95 % CI=0.382-0.995), and medical equipment (OR=1.933, 95 % CI=1.035-3.611). Participants in fair (OR=0.359, 95 % CI=0.158-0.813) and good health (OR=0.423, 95 % CI=0.229-0.780) were less likely to participate in studies accessing medical records. Those in good health were also less likely to participate in medication studies (OR=0.298, 95 % CI=0.108-0.824). Conversely, participants in poor health were more likely to participate in genetic research (OR=10.214, 95 % CI=1.023-101.984). Regionally, participants from Central Florida were more likely to report interest in general research (OR=3.098, 95 % CI=1.725-5.565), and those from North Florida were more likely to report interest in research involving overnight hospital stays (OR=2.891, 95 % CI=1.256-6.656).

Trust in research, along with key sociodemographic factors such as education, race/ethnicity, health status, and geographic location, significantly influenced willingness to participate in health research. These findings emphasize the need for inclusive, trust-building strategies to enhance and promote diverse participation in health research.