Cultivating a Cycle of Trust With Diverse Communities in Practice-Based Research: A Report From PRIME Net

Abstract

PURPOSE Practice-based research networks (PBRNs) are increasingly seen as important vehicles to translate research into practice, although less is known about the process of engaging diverse communities in PBRN research. The objective of this study was to identify strategies for successfully recruiting and retaining diverse racial/ethnic communities into PBRN research studies.METHODS This collaborative, multisite study engaged 5 of the 8 networks of the PRImary care MultiEthnic Network (PRIME Net) consortium that conducts research with traditionally underrepresented/underserved populations. We used a sequential, qualitative research design. We first conducted 1 key informant interview with each of 24 researchers experienced in recruiting research participants from 5 racial/ethnic communities (African American, Arab/Chaldean, Chinese, Hispanic, and Native American). Subsequently, we conducted 18 focus groups with 172 persons from these communities.RESULTS Participants' comments indicated that successful recruitment and retention of underrepresented populations in PBRN studies is linked to the overall research process. This process, which we termed the cycle of trust, entailed developing and sustaining relationships of trust during 4 interrelated stages: before the study, during study recruitment, throughout study conduct, and after study completion. Participants identified a set of flexible strategies within each stage and called for close engagement with clinic and community partners.CONCLUSIONS Our participants suggest that approaches to research that lay a foundation of trust, demonstrate respect for community members, and extend beyond the enrollment and data collection phases are essential to enhance the participation of diverse populations in PBRN research. These findings offer the PBRN community a guide toward achieving this important goal. 2013;550-558. doi:10.1370/afm.1543. Ann Fam Med INTRODUCTIONN ational leaders in the United States are insisting on more rapid translation of research into practice, greater applicability of research to everyday practice, and inclusion of diverse populations in the research effort. With regard to the last, diverse populations are consistently underrepresented in clinical research studies. [1][2][3][4] Although practice-based research networks (PBRNs) have drawn attention as mechanisms to facilitate the goals of speeding translation of research into practice, less is known about the process of engaging diverse communities in PBRN research.PBRNs have a long history of working with primary care clinicians to generate research ideas and facilitate study recruitment, 5 and have also sought to engage, though to a lesser degree, patients and community members in the research process. 6 They are well positioned to access diverse patient populations and contexts. 7 Despite this potential, we are not aware of any systematic examinations of how PBRNs engage a wide range of racial/ethnic groups in the research enterprise.Failure to recruit and enroll diverse racial/ethnic g...

Use of Community Engagement Strategies to Increase Research Participation in Practice-based Research Networks (PBRNs)

“…Some authors advocate that essential components of community involvement in research are shared decision making, developing appropriate research priorities, cultural competence, and building and maintaining trust between the community and researchers. 7,12,13,[15][16][17][18] To implement these components in a sustainable fashion, the infrastructure barriers that come from the piecemeal or study-specific funding of most PBRNs need to be overcome.…”

“…This is important new evidence of the efficacy of the recommended community engagement strategies comprising the cycle of trust. 12 Similarly, the National Institutes of Health Director's Council of Public Representatives endorsed strategies that (1) treat the public as a partner in the research process; (2) share research results with the community; (3) view research as part of a long-term commitment to the community; and (4) value community partnership in research. 15 This study adds to the mounting evidence that community engagement is an important strategy for improving health research, the benefits of which include increased recruitment/retention, greater diversity of participants, more representative cohorts, and increased trust between community members and researchers.…”

“…This article presents the results of the quantitative component of a mixed methods study and is a continuation of previously published research that established a cycle of trust for recruiting and retaining racial and ethnically diverse populations into medical research studies. 12 The cycle of trust emphasizes the importance of developing and sustaining relationships before the study, during study recruitment and conduct, and after study completion. Synthesizing the data from focus groups and key informant interviews resulted in 7 recommended strategies for recruiting and retaining diverse communities in research.…”

“…Synthesizing the data from focus groups and key informant interviews resulted in 7 recommended strategies for recruiting and retaining diverse communities in research. 12 A national survey of PBRN directors (reported here) was conducted to learn about experience with these community engagement strategies.…”

In This Issue: Working in Community and Improving Health Care Quality

“…Flexible strategies at each stage, as well as close engagement of practice and community partners, develop trust and ongoing participation. 3 Hurricane Sandy provides an opportunity for a local pharmacist to facilitate, experience, and rediscover the meaning of community in Hoboken, New Jersey. 4 …”