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Published on: January 12, 2018
Trial staff and community member perceptions of barriers and solutions to improving racial and ethnic diversity in
Maureen Shields1,2, Anne Rivelli1,2, Yamilé Molina3
1Advocate Aurora Research Institute, Milwaukee, WI, USA.
Background:
The lack of racial and ethnic diversity in clinical trials leads to skewed findings, limited generalizability, inequitable health outcomes for people of color, and insufficient access to innovative therapies. Our objective was to compare perceptions of barriers to participation in trials for people of color and trial staff to provide tangible solutions for improving diversity among study participants.
Methods:
This mixed method study utilized semi-structured interviews and surveys to evaluate barriers to participation and solutions to improve racial and ethnic diversity in clinical trials among healthcare system trial staff and community members from the same region. Through thematic analysis via coded transcripts and quantitative analysis via survey data, social support theory constructs were identified to evaluate where perceptions of barriers and solutions overlap and where they diverge.
Results:
A total of 55 trial staff and 75 community members participated in the study. Trial staff identified logistics and patients' unwillingness to receive additional treatments as perceived barriers to participation, while community members stated lack of information and lack of trust in their care team. Both groups identified hesitance toward research as a prominent barrier. Solutions related to informational support demonstrated the most overlap between groups, while instrumental support showed the most discordance.
Conclusion:
Solutions for improving racial and ethnic diversity in clinical trial participation are multi-faceted and have various levels of impact. Overlap and discordance of opinions regarding solutions should be further evaluated, and implementation of solutions should be carefully considered.
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