Background: The institutions which comprise the Clinical and Translational Science Award consortium and the National Center for Advancing Translational Sciences continue to explore and develop community engaged research strategies and to study the role of community academic partnerships in advancing the science of community engagement. Objectives: To explore Clinical and Translational Science institutions (CTSA) in relation to an Institute of Medicine recommendation that community engagement occur in all stages of translational research and be defined and evaluated consistently. Methods: A sequential multi-methods study starting with an online pilot survey followed by survey respondents and site informant interviews. A revised survey was sent to the community engagement and evaluation leads at each CTSA institution, requesting a single institutional response about definitions, indicators and metrics of community engagement and community-engaged research. Results: A plurality of CTSA institutions selected the definition of community engagement from the Principles of Community Engagement. While claiming unique institutional priorities create barriers to developing shared metrics, responses indicate an overall lack of attention to the development and deployment of metrics to assess community engagement in and contributions to research. Conclusions: Although definitions of community engagement differ among CTSAs, there appears more similarities than differences in the indicators and measures tracked and reported on across all definitions, perhaps due to commonalities among program infrastructures and goals. Metrics will likely need to be specific to translational research stages. Assessment of community engagement within translational science will require increased institutional commitment.

The inclusion of Persistent Complex Bereavement Disorder (PCBD) in the DSM-5 appendix signifies a call for research regarding the distinguishing features and clinical utility of proposed PCBD criteria. Rigorously constructed tools for assessing PCBD are lacking, especially for youth. This study evaluated the validity and clinical utility of the PCBD Checklist, a 39-item measure designed to assess PCBD criteria in youth aged 8 to18 years. Test construction procedures involved: (a) reviewing the literature regarding developmental manifestations of proposed criteria, (b) creating a developmentally informed item pool, (c) surveying an expert panel to evaluate the clarity and developmental appropriateness of candidate items, (d) conducting focus groups to evaluate the comprehensibility and acceptability of items, and (e) evaluating psychometric properties in 367 bereaved youth (M = 13.49, 55.0% female). The panel, clinicians, and youth provided favorable content validity and comprehensibility ratings for candidate items. As hypothesized, youth who met full PCBD criteria, Criterion B (e.g., preoccupation with the deceased and/or circumstances of the death), or Criterion C (e.g., reactive distress and/or social/identity disruption) reported higher posttraumatic stress and depressive symptoms than youth who did not meet these criteria, η = .07-.16. Youth who met Criterion C reported greater functional impairment than youth who did not, η = .08-.12. Youth who qualified for the "traumatic bereavement specifier" reported more frequent posttraumatic stress symptoms than youth who did not, η = .04. Findings support the convergent, discriminant, and discriminant-groups validity, developmental appropriateness, and clinical utility of the PCBD Checklist.

Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research. Context A major contributor to health disparities is the relative lack of resources—including resources for science—allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Methods Academic‐community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. Findings The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Conclusions Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

Qualitative research approaches have tremendous potential to integrate community and researcher perspectives to inform community health research findings. Effective dissemination of CBPR informed qualitative research findings is crucial to advancing health disparities research.

While the story of the Flint water crisis has frequently been told, even sympathetic analyses have largely worked to make invisible the significant actions of Flint residents to protect and advocate for their community. Leaving the voices of these stakeholders out of narratives about the crisis has served to deepen distrust in the community. Our project responds to these silences through a community-driven research study aimed explicitly at elevating the frame of Flint residents in and around the Flint water crisis. This paper describes the coming together of the research team, the overall project design for each of the three research efforts, and lessons learned. The three sub-projects include: (1) a qualitative analysis of community sentiment provided during 17 recorded legislative, media, and community events, (2) an analysis of trust in the Flint community through nine focus groups across demographic groups (African American, Hispanic, seniors, and youth) of residents in Flint, and (3) an analysis of the role of the faith-based community in response to public health crises through two focus groups with faith based leaders from Flint involved with response efforts to the water crisis. Our study offers insight for understanding trust in crisis, which could be valuable to other communities and researchers seeking to address similar situations. The project offers community science as a model for considering community engagement in research as part of the process of resilience.

Context: Medicaid plays a critical role in low-income, minority, and medically underserved communities, particularly in states that have expanded Medicaid under the Affordable Care Act. Yet, the voices of underresourced communities are often unheard in decisions about how to allocate Medicaid's scarce resources, and traditional methods of public engagement are poorly suited to gathering such input. We argue that deliberative public engagement can be a useful tool for involving communities in setting Medicaid priorities. Method: We engaged 209 residents of low-income, medically underserved Michigan communities in discussions about Medicaid spending priorities using an exercise in informed deliberation: CHAT (CHoosing All Together). Participants learned about Medicaid, deliberated in small groups, and set priorities both individually and collectively. Findings: Participants prioritized broad eligibility consistent with the ACA expansion, accepted some cost sharing, and prioritized spending in areas—including mental health—that are historically underfunded. Participants allocated less funding beyond benefit coverage, such as spending on healthy communities. Participants perceived the deliberative process as fair and informative, and they supported using it in the policy-making process. Conclusion: The choices of participants from low-income, medically underserved communities reflect a unique set of priorities and suggest that engaging low-income communities more deeply in Medicaid policy making might result in different prioritization decisions.

Community advisory boards (CABs) are a valuable strategy for engaging and partnering with communities in research. Eighty-nine percent of Clinical and Translational Science Awardees (CTSA) responding to a 2011 survey reported having a CAB. CTSAs’ experiences with CABs are valuable for informing future practice. This study was conducted to describe common CAB implementation practices among CTSAs; document perceived benefits, challenges, and contributions; and examine their progress toward desirable outcomes. A cross-CTSA collaborative team collected survey data from respondents representing academic and/or community members affiliated with CTSAs with CABs. Data representing 44 CTSAs with CABs were analyzed using descriptive statistics. A majority of respondents reported practices reflecting respect for CAB members’ expertise and input such as compensation (75%), advisory purview beyond their CTSA’s Community Engagement program (88%), and influence over CAB operations. Three-quarters provide members with orientation and training on roles and responsibilities and 89% reported evaluating their CAB. Almost all respondents indicated their CTSA incorporates the feedback of their CABs to some degree; over half do so a lot or completely. This study profiles practices that inform CTSAs implementing a CAB and provide an evaluative benchmark for those with existing CABs.

Background Community-based participatory research (CBPR) typically defines communities by geography, ethnicity, shared health needs, or some combination. Objectives We describe a CBPR project aiming to engage diverse minority and underserved communities throughout Michigan in deliberations about health research priorities. Methods A Steering Committee (SC) with 15 members from minority and underserved communities, and 4 members from research organizations led the project, with the help of regional advisory groups (RAGs) formed at the SC’s request. Evaluation of the SC used questionnaires, focused group discussion, and review of SC meetings to describe engagement, partnership, and communication. Lessons Learned An academic-community partnership with a diverse, dispersed and broadly defined community found value in RAGs, dedicated academic staff, face-to-face meetings, varied communication modalities, capacity building tailored to varying levels of CBPR experience, and ongoing evaluation. Conclusions A geographically and culturally diverse partnership presents challenges and opportunities in representativeness, relationship building, capacity building, and communication.