Evaluation of 3 approaches for increasing patient engagement in clinical research: Feedback from a community engagement advisory board. Issue 1 (6th July 2018)

• Record Type: Journal Article
• Authors: Matthews, Alicia K.; Rak, Kevin; Anderson, Emily; Castillo, Amparo; Ruiz, Raymond; Choure, Wendy; Willis, Marilyn
• Is Part Of: Journal of clinical and translational science. Volume 2:Issue 1(2018)
• Page Start: 14
• Page End: 19
• Publication Date: 2018-07-06
• Subjects: Recruitment, -- community engagement, -- qualitative research, -- universal consent, -- patient registries, -- patient portals; Clinical medicine -- Research -- Periodicals; Medicine, Experimental -- Periodicals; Human experimentation in medicine -- Periodicals; 616.027
• DOI: 10.1017/cts.2018.12
• Languages: English
• ISSNs: 2059-8661

Abstract

Abstract : Introduction: The purpose of this study was to obtain feedback from a diverse group of community advisory board members about different clinic or hospital-based approaches to increasing research participation. Methods: Members of an established community engagement advisory board (n=16) provided qualitative and survey data regarding attitudes and preferences for 3 hospital and clinic system strategies to recruit patients into clinical research including universal consent for research, patient registries, and patient portals. Results: Overall, there was moderate support for each of the 3 approaches discussed. Board members described advantages and disadvantages of each method. Based on the qualitative data, universal consent was viewed as the best strategy for consenting high volumes of patients for research. However, patient registries and portals were seen as more acceptable, less-intrusive and more likely to result in higher participation rates. Survey data were consistent with qualitative findings. Conclusions: Input from community stakeholders is needed to identify strategies to enhance participation and increase diversity in clinical research. Members of our CEAB identified patient registries and portals as feasible and nonintrusive approaches to increasing research participation. Additional research is needed to confirm these findings and to establish best practices for supporting patients in using registry approaches.