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"Do they REALLY trust us"?: Lessons from a volunteer research registry.
Sylk Sotto-Santiago1,2, Sarah Wiehe2,3, Brenda Hudson2
1Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, USA.
Journal of Clinical and Translational Science
|December 10, 2024
Summary
Many individuals distrust medical research, with 41% believing doctors conduct research for selfish reasons. Understanding and addressing this distrust is crucial for improving health research engagement and participation.
Area of Science:
- Community-based participatory research
- Health services research
- Biomedical research engagement
Background:
- All IN for Health is a community-academic partnership in Indiana focused on health research literacy and participation.
- Sponsored by the Indiana Clinical and Translational Science Institute (I-CTSI).
Purpose of the Study:
- To measure trust in biomedical research and healthcare organizations among research volunteers.
- To identify factors influencing community trust in health research.
Main Methods:
- Developed and utilized the Relationship of Trust and Research Engagement (RTRE) survey, comprising 36 items on a 5-point Likert scale and three open-text questions.
- Conducted 3 focus groups with 24 participants prior to survey launch.
- Recruited participants via the All IN for Health newsletter for a summer 2022 survey administration.
Main Results:
- 663 individuals participated in the survey.
- 41% believed doctors conduct research for selfish reasons; 50% disagreed that patients receive equitable treatment regardless of race/ethnicity.
- 67% found participation in medical research safe, yet 79% had never been asked to participate; 10% held discriminatory beliefs about minority research participation.
Conclusions:
- Measuring trust is essential for facilitating participant recruitment and ensuring institutional accountability.
- Understanding community trust and critically reflecting on research practices are imperative for authentic engagement.
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