Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research.

Purpose: Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements. Design: Quantitative analysis of close-ended Delphi survey. Participants: We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling. Main Outcome Measures: We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders. Results: 259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements. Conclusions: The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity.

Conceptualizing trust in community-academic research partnerships using concept mapping approach: A multi-CTSA study.

OBJECTIVES: Collaborations between communities, healthcare practices and academic institutions are a strategy to address health disparities. Trust is critical in the development and maintaining of effective collaborations. The aim of this pilot study was to engage stakeholders in defining determinants of trust in community academic research partnerships and to develop a framework for measuring trust. METHODS: The study was conducted by five collaborating National Institute of Health' Clinical and Translational Sciences Awardees. We used concept mapping to engage three stakeholders: community members, healthcare providers and academicians. We conducted hierarchical cluster analysis to assess the determinants of trust in community-academic research partnerships. RESULTS: A total of 186 participants provided input generating 2,172 items that were consolidated into 125 unique items. A five cluster solution was defined: authentic, effective and transparent communication; mutually respectful and reciprocal relationships; sustainability; committed partnerships; and, communication, credibility and methodology to anticipate and resolve problems. CONCLUSION: Results from this study contribute to an increasing empirical body of work to better understand and improve the underlying factors that contribute to building and sustaining trust in community academic research partnerships.