Abstract

The Learning and Action in Community Health project was implemented to gather preliminary data needed to inform community-engaged educational approaches to increase clinical research participation among racial minorities. The Health Belief Model was the theoretical framework utilized to develop the intervention and assessment tools. An educational session about clinical research and biorepository participation was designed using clinicaltrials.gov information and administered to adult, African American community residents (n = 60) in Atlanta, Georgia. Pre- and post-tests were collected and analyzed to assess changes in participants’ knowledge, perceptions, and willingness to participate in clinical studies and biorepositories. There were statistically significant changes in knowledge about joining a clinical study (p < 0.001) and registry or biorepository (p < 0.001). There was no statistically significant change in willingness to participate in clinical research or biorepositories after the educational session. Focus groups were conducted to gather feedback on the educational session and perceived barriers and benefits to participating in clinical research. Perceived benefits were improving health, receiving incentives, early detection of health issues, and access to care. Perceived barriers included fear, lack of knowledge, historical mistrust of research, and time constraints. Results have implications for subsequent community-engaged approaches to increasing minority participation in clinical research.

Highlights

  • Low engagement of racial minorities in health research is well recognized in biomedical, clinical and translational research [1,2,3]

  • Focus group participants were asked “What do you think are the benefits of participating in clinical research or participant registries?” Common themes that the participants reported were: helping to improve health, receiving incentives, early detection, and access to healthcare/medications

  • Recent research suggested that willingness to participate does not reflect actual participation as participants may be more likely to answer positively about willingness to participate due to a tendency to exhibit pleasing and socially accepted behavior [34]. The results of this pilot initiative to increase African American knowledge and willingness to participate in clinical research are promising and offer suggestions for tailoring the educational content

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Summary

Introduction

Low engagement of racial minorities in health research is well recognized in biomedical, clinical and translational research [1,2,3]. Despite decades of initiatives to include participation of minorities in research, participation of adult minorities in clinical trials (CT) is not proportional to their representation in the U.S population [4,5]. Racial minorities still have lower participation rates. Res. Public Health 2018, 15, 1862; doi:10.3390/ijerph15091862 www.mdpi.com/journal/ijerph. Perceived benefits of participating in clinical studies Perceived barriers to in clinical studies) participating in clinical studies. Perceived severity of participating in clinical studies. Perceived self-efficacy to participate in clinical studies Action

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