The keyword search in InfoEd and IRB databases yielded the names and research projects of 51 investigators. Sixteen investigators were confirmed as eligible based on a review of project abstracts; 14 of these responded to email invitations and agreed to participate. Four additional participants were referred by initial participants. In all, 18 investigators (16 faculty and 2 senior research associates) provided consent and completed interviews. Interviews averaged 45 min.
The participant sample (Table 2
) was 50% female, had a mean age of 55 years, was mostly White, and had varied academic backgrounds. Most participants held doctoral degrees (i.e., PhD, DrPH, EdD, MD, and MD/PhD). On average, participants had worked at WFSM/WFBH for nearly 14 years, and represented six academic departments. Nearly all participants indicated they had never received formal education or training in CEnR, though 100% reported “on-the-job” training and experience. All had been principal investigators on at least one federally funded research project.
3.1. Domains and Themes Related to Community Engagement and CEnR
Twenty themes emerged across six domains related to community engagement and CEnR within an aLHS (Table 3
): Conceptualization and Purpose, Value and Investment, Community-Academic Partnerships, Sustainability, Facilitators, and Challenges.
3.1.1. Conceptualization and Purpose of CEnR
Participants agreed that CEnR is a collaborative approach to research designed to improve health and well-being through participatory and better-informed inquiry, always with an eye on how knowledge generated can be translated and applied within the local affected community. However, participants noted that this local application of knowledge does not preclude its generalizability and transferability to other contexts, thus aligning with the broader research goals of an aLHS. Participants also identified CEnR as an approach relevant within many aspects of an aLHS, including education and training, quality improvement, clinical care, and clinical trials.
Participants highlighted the difficulties in defining “community” and emphasized that communities are heterogeneous, which can be challenging for investigators and research teams who may want “simple answers” (e.g., perspectives and insights) from community partners; as participants reported, working with one community does not yield one voice. CEnR was identified as requiring careful consideration of the various perspectives and insights of all partners. Finally, participants also identified additional goals of CEnR, including strengthening connections within the community, building resilience and capacity, and reducing the effects of marginalization.
3.1.2. Value and Investment in CEnR: Institutional, Professional, and Personal
Participants described CEnR as an under-appreciated and frequently misunderstood approach to research within many institutions, including federal funding agencies such as the NIH, the U.S. Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA). A participant reported that this misunderstanding among federal partners persists even when a project is required by the federal partner and funder and initially designed to be conducted using CEnR approaches. A participant provided an example of an intervention study that resulted in null findings; the participant attributed the study’s null findings to funder-required changes to the study design, recruitment and retention strategies, and an intervention that did not align with community partner perspectives and were contrary to project-specific community steering committee guidance.
Participants also noted that their professional and academic investment in CEnR stemmed from their own personal values, including community health, health equity, and social justice. Participants agreed that this commitment was not limited to traditional nine-to-five “work hours,” but that successful community engagement must be woven into daily life and interactions to be successful.
3.1.3. Community-Academic Partnerships
Participants expressed that the type and degree of engagement, and the ease with which partnerships are formed, depend on the extent to which communities feel they have been marginalized and how they perceive research and research institutions. Moreover, partnerships, how they function, and the roles of partnership members in CEnR vary profoundly across investigators and across projects. Participants identified many areas as essential to the development of strong and productive partnerships: fostering trust and mutual respect, balancing expertise across community and aLHS partners, investing time, facilitating open communication, embracing conflict as a strategy for resolution, and overcoming barriers (including addressing community mistrust based on previous community experiences with both research and health care). Participants noted the role of the Tuskegee Syphilis Study [27
], the Guatemalan Syphilis Experiments [28
]), and rampant anti-immigration rhetoric [29
], racism, homophobia, and transphobia in the United States as contributing to community mistrust.
3.1.4. Sustainability of CEnR
Participants described sustaining CEnR as complex, citing both the need and the difficulty of maintaining community-aLHS partnerships beyond the time period of an individual project. They highlighted the difficulty in sustaining partnerships without funding for continued community involvement and effort from academic investigators and research teams. Additionally, participants noted that sustainability is influenced by the strength and quality of engagement throughout a project, and how well community partners were incorporated into the research process—from conception, study design and conduct, data analysis and interpretation, to the dissemination of findings.
3.1.5. Facilitators of CEnR
Participants emphasized the need for institutional support (e.g., funding, protected time, and respect) and research resources (e.g., CTSA and institutional research centers) that prioritize CEnR as integral to the academic mission of an aLHS. Participants also noted the immense value of having an IRB that is willing to learn the nuances of CEnR in order to approve and oversee CEnR.
3.1.6. Challenges of CEnR
Participants described the potential for burn out and strain resulting from the need to incorporate community engagement into daily life and the great time commitment accompanying CEnR. Other challenges identified by participants related to the discordance between community and academic goals within a given research project, and differences in overarching community and academic priorities that challenged collaboration. Participants also described the challenges of history and how an institution’s complicity in oppressive practices of the past influenced the development and maintenance of community research partnerships. For example, some participants cited WFSM/WFBH’s past involvement in the North Carolina Eugenics Program [30
] as reducing community trust and engagement.
3.2. Enhancing Community-Engaged Research within an aLHS
We also identified eight emergent needs that could enhance CEnR within aLHSs (Table 4
). First, participants described the need for increased understanding among academic investigators, research teams, and healthcare providers of community contexts and assets, social determinants of health (also known as “social drivers of health”), and historical factors that influence community and population health. Participants reported that this increased understanding may be particularly critical because many investigators, research teams, and providers may be from other regions of the country or other parts of the world. Thus, although well intentioned, they may not sufficiently understand the local community or the contexts of the populations of interest and focus.
Similarly, participants noted a profound need for increased understanding of CEnR within the aLHS and its value as an approach within community and population health, public health, and medicine. Participants expressed frustration that CEnR is often conflated with community outreach; formative or qualitative research; or behavioral and social sciences. Participants emphasized that members of communities have critical perspectives regarding research into locally identified needs and priorities. Such collaborations can harness the assets of both the community and the aLHS.
Third, participants also highlighted the need for training community members, academic investigators, and research teams to increase their understanding of and skills in partnering with communities and conducting CEnR. Participants noted that establishing authentic and productive partnerships to conduct CEnR is difficult, and, despite good intentions, many investigators and research teams at the emerging aLHS do not understand how to work effectively with community members and representatives from community organizations. At the same time, participants shared that community partners may not sufficiently understand the research process, how evidence and knowledge are generated, and the various components of and objectives inherent within an aLHS.
Fourth, participants noted that although the theories and principles underlying CEnR are well documented, effective frameworks and methods aligned with CEnR are needed. They noted the need for methodologic innovations. Participants noted methods such as photovoice [31
], empowerment-based community forums [32
], evidence academies [33
], and citizen science [23
] are well developed, further research approaches to and methods aligned with CEnR are needed.
Participants also noted that policy changes can positively affect health in multiple ways, whether within an aLHS, the local community, or nationally. They identified a need for evidence-based, practical guidance to increase the translation of CEnR findings into policies designed to improve community and population health.
Sixth, participants acknowledged the need for guidance on balancing the perspectives of community and aLHS partners. They reported that it can be difficult for academic investigators and research teams to know how to elicit community partner perspectives, to usefully share their own perspectives (based on theory, their own prior research, and the existing literature), build on and negotiate with community partners, and negotiate and compromise in ways that ensure sound science and maximize the success of a research project. Participants noted that CEnR requires weighing scientific rigor and what is realistic and “doable”; far too often, participants reported, investigators and research teams may choose rigorous research approaches that simply cannot be successfully implemented. Participants asserted not including community perspectives through CEnR could result in study designs that are inauthentic to how communities convene, interact, and take action; enrollment and retention plans that are not acceptable or realistic; and/or measurement that does not make sense to members of the community. In such situations, data collection may be sacrificed, analysis and interpretation of findings may be less accurate, and sustainability and meaningful dissemination of findings may not be possible.
Participants cited a need for a model to incorporate principles of CEnR into research mission, vision, and priorities of an aLHS. They suggested that the linkages between CEnR and aLHS need further exploration and articulation. Finally, participants reported the need for more institutional support for community engagement and CEnR. This support included pilot funding and protected time of investigators and research teams to establish partnerships, develop innovative methods, and explore integration of community perspectives into the priorities and processes of an aLHS.