Persistent challenges with clinical trial enrollment and retention limit the extent to which novel approaches are translated into clinical and community practice for real-world benefit. Community engagement is one strategy that may improve enrollment and retention. The current study sought to 1) describe the extent to which clinical trials utilized specific levels of community engagement and 2) examine associations between level of community engagement and study process outcomes. We hypothesized that clinical trials with higher levels of community engagement would have more successful participant enrollment and retention.

Using manifest content analysis, we examined associations between community engagement strategies and three study process outcomes: total enrollment, time to full enrollment, and retention, as documented on ClinicalTrials.gov.

Of 619 studies that met inclusion criteria, 349 published findings, of which only eight studies described any community engagement. The eight studies with publications that described community engagement had higher actual enrollments and shorter time to full enrollment than studies without any description of community engagement in their associated publications.

Results demonstrate positive associations between documented community engagement and enrollment in clinical trials. Community engagement has strong promise for increasing the efficiency and real-world impact of clinical research. However, findings revealed the infinitesimal number of clinical trials that utilized community engagement and the rarity of co-leadership.

Meaningful inclusion of communities in research is both an ethical imperative and a driver of more equitable, relevant, and trustworthy science. Yet communities remain underrepresented as research partners due to historical non-inclusion, structural barriers, and a lack of institutional pathways that build shared language and sustained opportunities for engagement. We developed and evaluated community scientist (CS) training program to prepare community members to engage as partners across the translational research continuum.

Mayo Clinic launched the CS program in 2021 as a one-day training and expanded to a four-week course in 2022 and an eight-week program with a six-week experiential assignment in 2023–2024, with asynchronous options added in 2025. The curriculum integrates didactic instruction with applied learning in research ethics and Institutional Review Board processes, genomics, biobanking, clinical trial diversity, social determinants of health, and researcher-community collaboration. Pre- and post-training surveys assessed participants’ familiarity with key research domains, with additional evaluation of experiential learning.

Forty-eight participants completed pre-training survey and 30 completed the full didactic program. Familiarity with CS role increased from 43.8% to 100%. Familiarity with genomics and biobanking increased from 20.8% to 94.1%, and familiarity with research ethics/IRB processes increased from 45.8% to 94.1%. Participants reported improved understanding (82%), confidence (80%), overall satisfaction (89%), and ability (70%) to partner with research teams.

This CS experiential training model increased readiness for partnership among diverse community members across three regions. The model strengthens institutional infrastructure for community-engaged research and supports community-relevant translation across research settings.

Research emphasizing community input and participation, here termed “community-focused research,” is increasing in the health sciences literature. Maintaining a community focus may shape methodological choices around data collection, yet little is known about what types of data (primary, secondary; quantitative or qualitative) community-focused researchers use.

Information on data sources and data collection methods were abstracted from the final products from five cohorts of community-focused research teams who participated in Robert Wood Johnson Foundation’s Interdisciplinary Research Leaders program between 2016 and 2023.

Among 53 total teams with a final product, the vast majority used primary data either alone (74%) or in combination with secondary data (21%). Of the 50 teams who conducted primary data collection, 38% collected only qualitative data, 18% collected only quantitative data, and 44% collected both quantitative and qualitative data.

Primary data collection and qualitative methods were far more common in these community-focused research projects than in the general health sciences literature. The reasons that so many teams chose to collect primary, qualitative data are not known but may reflect a lack of existing data on communities of interest, prioritization of data collection methods that allow for greater community involvement, or research on novel topics for which there are not yet validated quantitative measurement tools. Identifying reasons for these data collection choices may identify opportunities for improving efficiency (e.g., making existing data easier to access) and/or targeting training (e.g., in qualitative data collection) to support community-focused research.

Community Advisory Groups (CAGs) are used to engage communities in research, yet guidance on optimal structure, function, and sustainability is limited. This study aimed to characterize CAGs affiliated with the Oregon Health & Science University Clinical and Translational Science Award (CTSA) Community Program, develop a typology, and evaluate operational strategies and effectiveness.

This qualitative descriptive study of 22 CAGs used CAG documents to identify CAG structure, membership, and operations. Ideal-type analysis identified patterns across cross-cutting factors: scope and specificity, primary function, institutional affiliation, and constituency.

CAGs varied substantially in structure and purpose. Four typologies emerged: (1) Project-based (n = 13) – narrow, study-specific scope, research-focused advisory roles, strong institutional control; (2) Programmatic (n = 3) – broad focus, institutionally embedded scope, strategic guidance across multiple initiatives; (3) Hybrid (n = 3) – intermediate or blended patterns, regional networks combining project-specific and broader oversight; (4) Coalition-style (n = 3) – community-driven, broad scope, decentralized, with diverse local stakeholder representation. Comparative analysis highlighted trade-offs across typologies. Project-based CAGs excelled in targeted implementation support, programmatic CAGs promoted continuity and institutional influence, coalition-style CAGs fostered community ownership and capacity-building, and hybrid models balanced scalability and local control. Formal evaluation of CAG effectiveness was limited across all types.

CAGs within one CTSA displayed heterogeneous structures with designs that aligned with project goals, community context, and available resources. Flexible, purpose-driven approaches to CAGs can enhance engagement, trust, and translational impact. Future work is needed to develop empirically grounded frameworks to guide CAG design, implementation, and sustainability and advance evaluation tools.

Black and Hispanic communities in the United States have been disproportionately affected by COVID-19 but remain underrepresented in health research. We examined whether a culturally tailored digital storytelling intervention increased interest in, and enrollment into, a COVID-19 antibody research study.

We conducted a randomized trial from September 2021 to December 2022 among Black and Hispanic adults in Central Massachusetts. Participants, recruited through respondent-driven and convenience sampling, were randomized to receive a storytelling intervention (narrative videos plus educational content) or a comparison intervention of educational content only (Learn More), using Qualtrics and RedCap surveys. Primary outcome was the rate of participant interest in COVID-19 antibody study enrollment. Secondary outcomes included enrollment in the antibody study and providing a blood sample. Participants were followed from consent through completion of the post-intervention survey, with duration varying based on survey completion timing. Analyses followed an intention-to-treat approach.

Of 390 randomized participants, 343 completed the study (Storytelling: n = 173; Learn More: n = 170). 68% of the Storytelling and 75% in the Learn More group were interested in joining the antibody study (proportion difference = 0.07, 95% CI: −0.02, 0.16). Enrollment rates into the antibody study and blood sample provision were similar. Storytelling group participants who identified with their favorite story were significantly more likely to enroll (OR = 1.29, 95% CI: 1.03–1.60).

The storytelling intervention did not increase overall research participation, but story relevance was associated with greater enrollment, suggesting that stories with personal connection may improve engagement in research among underrepresented communities.

Rural health research continues to expand, yet Appalachian-specific contexts differ from other rural contexts. This scoping review examined health priorities in Appalachian and broader rural health research, comparing patterns in methodological frameworks and exploring how community engagement (CE) and team science (TS) are applied in the context of Appalachian health research.

The Population–Concept–Context framework was used to define inclusion criteria for peer-reviewed studies identified through PubMed and Google Scholar searches. Studies selected were grouped by regional focus (Appalachian, Rural, and Rural Appalachian), with thematic synthesis and descriptive analysis applied across domains.

Appalachian studies emphasized cultural context, structural barriers, and participatory methods, integrating cultural considerations directly into research design and implementation. Rural studies framed health disparities in terms of access gaps, infrastructure failure, and resource barriers. Rural Appalachian studies integrated equity, resilience, and intersectional concerns. CE was applied across all groups; formal TS methods were applied inconsistently.

Appalachian and rural studies differ in framing and methodology. Appalachian research emphasizes structural inequities and CE, while broader Rural studies focus on access-related barriers. These differences highlight the importance of place-based approaches to understanding health disparities, emphasizing the need for context-specific research.

Underrepresented communities in the Southwestern United States Borderlands region face disproportionate substance use disorder (SUD) burdens yet remain largely excluded from clinical trials. No existing resource integrates health beliefs, research literacy, and vulnerability frameworks to support diverse community engagement in SUD clinical trials.

We developed the Exploring Health Beliefs for Community Engagement and Diversity in Clinical Trials (EXPLORE) Toolkit through a multi-phase process (2021–2024) including systematic review of existing toolkits, domain development, platform design, individual interviews (n = 10), and two rounds of theater testing with community health workers serving Hispanic communities in Southern New Mexico (n = 60) and American Indian communities in Northern New Mexico (n = 25). Pre/post surveys assessed feasibility, acceptability, community interest, and research literacy. Ripple Effects Mapping evaluated the development process.

Domain-specific toolkit importance ratings averaged 4.48–4.61 on a 5-point scale; 79% of participants rated the toolkit “very important” for promoting culturally competent research, and 64% were “very likely” to recommend it. Post-theater testing scores improved for perceived feasibility of conducting clinical research in participants’ communities (pre: 7.19 vs. post: 7.94, 10-point scale) and research terminology understanding (pre: 7.97 vs. post: 8.74). Qualitative themes included cultural appropriateness, the role of community gatekeepers, and confidentiality concerns in rural and border communities.

The EXPLORE Toolkit demonstrates promise for bridging researcher–community gaps in SUD clinical trials. Findings highlight the value of interdisciplinary, community-centered development and the need for ongoing cultural adaptation. The toolkit is freely available at https://www.exploretoolkit.org/.

The Community Engagement (CE) Studio is an established approach for integrating community and patient perspectives into research. Despite its widespread implementation, little information is available about how this model has been adapted across institutions to accommodate varying resources and capacities.

The Patient and Community Engagement in Research (PaCER) Program at UNC-Chapel Hill modified the CE Studio model – with adaptations to recruitment, onboarding, virtual delivery, compensation, and session planning – resulting in the development of a new Community Feedback Session (CFS) service. This adaptation yielded a scalable model that requires fewer resources, supports capacity-building within research teams, and leverages technology. We then evaluated the CFS approach via surveys distributed to CFS attendees and researchers.

Between January 2022 and August 2025, we conducted 46 CFSs across 19 projects engaging 302 attendees; 149 attendees and 34 researchers completed evaluation surveys. Of these, 99% of attendees indicated they would participate again, and 97% of researchers rated the CFS service as Good or Excellent and recommended it to colleagues. Respondents appreciated the structure, facilitation, composition, and size of the sessions, and many had no suggestions for improvement. Researchers described changes they made to projects based on feedback received during CFSs, including amending study protocols, altering intervention content and delivery modalities, and revising a variety of study-related materials.

Evaluation data support the acceptability, feasibility, and utility of the CFS approach, indicating that this modified and scalable service accomplishes researcher goals, informs research in an impactful way, and provides value to partners.