Browsing by Author "Bruns, Rebecca"

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    “Do they REALLY trust us”?: Lessons from a volunteer research registry
    (Cambridge University Press, 2024-11-11) Sotto-Santiago, Sylk; Wiehe, Sarah; Hudson, Brenda; Slaven, James; Vinaixa, Conor; Bruns, Rebecca; Claxton, Gina; Delp, Lynsey; Lynch, Dustin; Moe, Sharon; Medicine, School of Medicine
    Background: All IN for Health is a well-established community-academic partnership dedicated to helping improve the lives of Indiana residents by increasing health research literacy and promoting health resources, as well as opportunities to participate in research. It is sponsored by the Indiana Clinical and Translational Science Institute (I-CTSI). The study's purpose was to measure trust in biomedical research and healthcare organizations among research volunteers. Methods: The Relationship of Trust and Research Engagement (RTRE) survey was developed utilizing 3 validated scales. The RTRE consisted of 36 items in a 5-point Likert scale with three open-text questions. We conducted 3 focus groups with a total of 24 individuals ahead of the survey's launch. Recruitment was done through the All IN for Health newsletter. The survey was administered in the summer of 2022. Results: Six hundred and sixty-three individuals participated in the survey. Forty-one percent agreed that doctors do medical research for selfish reasons. Moreover, 50% disagree that patients get the same medical treatment regardless of race/ethnicity. Sixty-seven percent think it is safe to participate in medical research, yet 79% had never been asked to participate. Ten percent believe that researchers select minorities for their most dangerous studies and expose minoritized groups to diseases. Conclusion: The utilization of tools to measure trust will facilitate participant recruitment and will assist institutions and investigators alike in accountability. It is imperative, we work toward understanding our communities' trust in medical research, assessing our own trustworthiness, and critically reflect on the authenticity of our efforts.
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    Relationship of Trust and Research Engagement
    (Indiana Medical Student Program for Research and Scholarship (IMPRS), 2023) Bruns, Rebecca; Vinaixa, Conor; Haywood, Antwione; Ridley-Merriweather, Katherine Ellen; Sotto-Santiago, Sylk
    Background/Objective: Lack of trust is a major barrier to research participation and can lead to disparities in health outcomes. Scales that measure trust in healthcare organizations and biomedical research have never been synthesized into a single tool, nor has such a scale been used to assess attitudes regarding trust in a more focused community. This project aims to measure trust in medical researchers and healthcare institutions in Indiana. Methods: A survey was created by combining previously validated trust scales (Shea et al., Mainous et al., and Hall et al.) along with questions about demographic backgrounds. Cognitive interviewing was conducted in three focus groups to finalize survey questions. The questionnaire was sent to participants recruited via email from the All IN for Health registry, a statewide database of volunteers interested in research participation. Results: At the time of analysis, 481 participants had completed the survey. About half of respondents were age 60+, and almost three times more women participated than men. The majority had bachelor's degrees or higher (72.5%). About half of participants agree that healthcare organizations cover up their mistakes. Half disagreed that patients get the same medical treatment regardless of race/ethnicity. Almost one in five respondents (17.4%) believe that medical researchers conduct experiments on people without their knowledge. Conclusion: Preliminary results suggest additional efforts may be needed to foster trust in healthcare research and organizations. Results may not be generalizable to the entire population due to differences in gender, race/ethnicity, and level of education across initial respondents. One limitation is that recruitment using the All IN for Health registry may have produced biased results. Further studies are needed to understand factors that may influence trust. Scientific/Clinical/Policy Implications: Results may influence public outreach and research recruitment to gain trust from Indiana residents and enhance participation in medical research.