Willingness to participate in weight-related research as reported by patients in PCORnet clinical data research networks

BACKGROUND: Since 2014 the Patient Centered Outcomes Research Institute (PCORI) has funded 13 Clinical Data Research Networks (CDRNs) around the country to support large-scale comparative effectiveness research and pragmatic clinical trials. To provide guidance for future recruitment efforts among CDRNs this study described differential willingness to participate in weight-related research by body mass index (BMI) and sociodemographic characteristics. METHODS: During 2014–2016 we surveyed participants from three CDRNs including the Mid-South CDRN, REACHnet, and the PaTH Network, representing 14 medical centers. Participants were eligible if they were ≥18 years, had ≥2 weights and ≥1 height in the electronic health record. Respondents were recruited face-to-face in primary care and specialty clinics, and via email from doctors’ offices, patient registries and health systems’ patient portals. Data was collected on willingness to participate in weight-related research (four items combined into a single scale; range 4–12), BMI, and sociodemographics (age, sex, number of people in household, marital status, education level, race, and ethnicity). Adjusted ordinal regression models tested associations between participant characteristics and willingness to participate in weight-related research. RESULTS: Among 11,624 respondents, mean BMI was 29.6 (SD 7.6) kg/m(2). Mean willingness to participate in weight-related research was 7.1 (SD 2.5). More respondents were willing to participate in studies with lower burden: healthy lifestyles (82.2%), genetics (71.3%), medication (52.2%), and surgery (22.6%). In adjusted models, higher BMI was associated with greater willingness to participate in weight-related research (OR = 1.13) as were younger age (OR = 0.98), being a woman (OR 1.59), and college education (OR = 1.72) (all p < 0.001). CONCLUSIONS: Associations among BMI, age, sex, and education level with willingness to participate in weight-related research highlight the need for future research to reduce barriers for populations less willing to engage in weight-related research.