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

William J Heerman,Wendy L Bennett,Jennifer L Kraschnewski,Amanda E Staiano,Elizabeth Nauman,Kenneth A Wallston

doi:10.1186/s40608-018-0187-3

Abstract

BackgroundSince 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.MethodsDuring 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.ResultsAmong 11,624 respondents, mean BMI was 29.6 (SD 7.6) kg/m2. 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).ConclusionsAssociations 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.

Highlights

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
Understanding the willingness to participate in weight-related research of potential research participants from each CDRN is relevant for both future recruitment efforts within these large networks and will allow for more generalizable conclusions that can inform recruitment approaches for obesity research
Understanding the potential determinants of and sociodemographic variation in people’s willingness to participate in weight-related research could help improve efforts to recruit and retain samples that are representative of the population most affected by obesity-related conditions

Summary

Introduction

Differential willingness to participate in research is especially relevant for medical conditions, such as obesity, where under-represented minorities have a disproportionate disease burden [4]. There has been concern that minority patients may be less willing to participate in clinical trials because of distrust of the medical field [5, 6]. If not higher, participation rates in clinical or other health-related research for non-Hispanic, Black and Hispanic groups compared to non-Hispanic Whites, suggesting minority patients may be more willing to engage in research than previously thought [7]. Understanding differential rates of willingness to participate in weight-related biomedical research is an important component of developing equitable and generalizable approaches to combatting the obesity epidemic

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Discussion

Conclusion