Patient, Family, and Community Advisory Councils in Health Care and Research: a Systematic Review.

BACKGROUND: Patient-centeredness is a characteristic of high-quality medical care and requires engaging community members in health systems' decision-making. One key patient engagement strategy is patient, family, and community advisory boards/councils (PFACs), yet the evidence to guide PFACs is lacking. Systematic reviews on patient engagement may benefit from patient input, but feasibility is unclear. METHODS: A team of physicians, researchers, and a PFAC member conducted a systematic review to examine the impact of PFACs on health systems and describe optimal strategies for PFAC conduct. We searched MEDLINE, Embase, PsycINFO, CINAHL, Scopus, and Social Science Citation Index from inception through September 2016, as well as pre-identified websites. Two reviewers independently screened and abstracted data from studies, then assessed randomized studies for risk of bias and observational studies for quality using standardized measures. We performed a realist synthesis-which asks what works, for whom, under what circumstances-of abstracted data via 12 monthly meetings between investigators and two feedback sessions with a hospital-based PFAC. RESULTS: Eighteen articles describing 16 studies met study criteria. Randomized studies demonstrated moderate to high risk of bias and observational studies demonstrated poor to fair quality. Studies engaged patients at multiple levels of the health care system and suggested that in-person deliberation with health system leadership was most effective. Studies involving patient engagement in research focused on increasing study participation. PFAC recruitment was by nomination (n = 11) or not described (n = 5). No common measure of patient, family, or community engagement was identified. Realist synthesis was enriched by feedback from PFAC members. DISCUSSION: PFACs engage communities through individual projects but evidence of their impact on outcomes is lacking. A paucity of randomized controlled trials or high-quality observational studies guide strategies for engagement through PFACs. Standardized measurement tools for engagement are needed. Strategies for PFAC recruitment should be investigated and reported. PFAC members can feasibly contribute to systematic reviews. REGISTRATION AND FUNDING SOURCE: A protocol for record eligibility was developed a priori and was registered in the PROSPERO database of systematic reviews (registration number CRD42016052817). The Department of Veterans Affairs' Office of Academic Affiliations, through the National Clinician Scholars Program, funded this study.

Using community-based participatory research and organizational diagnosis to characterize relationships between community leaders and academic researchers.

Sustaining collaborations between community-based organization leaders and academic researchers in community-engaged research (CEnR) in the service of decreasing health inequities necessitates understanding the collaborations from an inter-organizational perspective. We assessed the perspectives of community leaders and university-based researchers conducting community-engaged research in a medium-sized city with a history of community-university tension. Our research team, included experts in CEnR and organizational theory, used qualitative methods and purposeful, snowball sampling to recruit local participants and performed key informant interviews from July 2011-May 2012. A community-based researcher interviewed 11 community leaders, a university-based researcher interviewed 12 university-based researchers. We interviewed participants until we reached thematic saturation and performed analyses using the constant comparative method. Unifying themes characterizing community leaders and university-based researchers' relationships on the inter-organizational level include: 1) Both groups described that community-engaged university-based researchers are exceptions to typical university culture; 2) Both groups described that the interpersonal skills university-based researchers need for CEnR require a change in organizational culture and training; 3) Both groups described skepticism about the sustainability of a meaningful institutional commitment to community-engaged research 4) Both groups described the historical impact on research relationships of race, power, and privilege, but only community leaders described its persistent role and relevance in research relationships. Challenges to community-academic research partnerships include researcher interpersonal skills and different perceptions of the importance of organizational history. Solutions to improve research partnerships may include transforming university culture and community-university discussions on race, power, and privilege.