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Evaluation of 3 approaches for increasing patient engagement in clinical research: Feedback from a community engagement advisory board

  • Alicia K. Matthews (a1), Kevin Rak (a2), Emily Anderson (a3), Amparo Castillo (a4), Raymond Ruiz (a2), Wendy Choure (a2) and Marilyn Willis (a2)...

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.

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Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution- NonCommercial-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.

Corresponding author

*Address for correspondence: A. K. Matthews, Ph.D., Department of Health Systems Sciences, College of Nursing, University of Illinois at Chicago, 845 S. Damen Avenue, Chicago, IL 60612, USA. (Email: aliciak@uic.edu)

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