Community Engagement Studios to Increase Research Participation and Diversity

Objectives: Community Engagement Studios are structured feedback sessions that actively engage community members in dialogue. Participants are considered expert consultants based on their lived experience and asked questions to help inform specific study design considerations. Women with urinary incontinence from diverse racial and ethnic backgrounds and those from underserved rural and urban communities were invited to participate prior to recruitment for a randomized-controlled trial comparing the efficacy of Beta-Agonist medication versus intradetrusor onabotulinumtoxinA for the treatment of refractory urgency urinary incontinence (UUI). Studios were also held with health care professionals treating patients from these groups. Studios were used for study planning to identify appropriate approaches to increase research participation.

Methods: Ten Community Engagement Studios were conducted at five geographically diverse sites; each site held two Studios: one with healthcare professionals and another with women with UUI. Studios occurred via Zoom and expert consultants provided recommendations with a focus on how to best recruit and retain patients, and partner with health care centers and other community organizations. Detailed, de-identified notes were compiled from each Studio to identify similar and contrasting recommendations across sites.

Results: Eighty experts (healthcare professionals n=33; community women n=47) participated across 10 Studios (See Table 1 for demographics). Experts across Studios discussed anticipated barriers for participant recruitment and retention with a focus on solutions to those barriers. Healthcare professional experts discussed strategies to make this study mutually beneficial for community providers and their patients. Similarly, community women experts focused on sharing of information and developing trust with diverse communities. There were site specific suggestions but also numerous ideas that may work across all sites. Important topics are reported in Table 2.

Conclusions: Community Engagement Studios provided meaningful feedback from multiple community stakeholders on strategies to increase research participation and diversity. Addressing anticipated barriers for UUI research participation include trust, literacy, and transportation. This feedback has been incorporated into study design with emphasis on patient-centeredness.

Acknowledgement.

Research reported in this abstract was funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Award (##-###-####).

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The [views, statements, opinions] presented in this abstract are solely the responsibility of the author(s) and do not necessarily represent the views of the PCORI®.