Research participants” feedback about their participation experiences offers critical insights for improving programs. A shared Empowering the Participant Voice (EPV) infrastructure enabled a multiorganization collaborative to collect, analyze, and act on participants’ feedback using validated participant-centered measures.

A consortium of academic research organizations with Clinical and Translational Science Awards (CTSA) programs administered the Research Participant Perception Survey (RPPS) to active or recent research participants. Local response data also aggregated into a Consortium database, facilitating analysis of feedback overall and for subgroups.

From February 2022 to June 2024, participating organizations sent surveys to 28,096 participants and received 5045 responses (18%). Respondents were 60% female, 80% White, 13% Black, 2% Asian, and 6% Latino/x. Most respondents (85–95%) felt respected and listened to by study staff; 68% gave their overall experience the top rating. Only 60% felt fully prepared by the consent process. Consent, feeling valued, language assistance, age, study demands, and other factors were significantly associated with overall experience ratings. 63% of participants said that receiving a summary of the study results would be very important to joining a future study. Intersite scores differed significantly for some measures; initiatives piloted in response to local findings raised experience scores.

RPPS results from 5045 participants from seven CTSAs provide a valuable evidence base for evaluating participants’ research experiences and using participant feedback to improve research programs. Analyses revealed opportunities for improving research practices. Sites piloting local change initiatives based on RPPS findings demonstrated measurable positive impact.

Community-engaged research/community-based participatory research/patient-engaged research (CEnR/CBPR/PEnR) are increasingly recognized as important approaches for addressing health equity. However, there is limited support for CEnR/CBPR/PEnR within Academic Health Centers (AHCs). It is important for AHCs to measure and monitor the context, process, and policies in support for CEnR/CBPR/PEnR. The Engage for Equity (E2) team developed the first Institutional Multi-Sector Survey (IMSS) instrument to assess and explore CEnR/CBPR/PEnR-related practices at three AHCs.

Working with “champion teams” consisting of academic leaders, researchers, and patient/community partners at each AHC, we developed the IMSS to assess the following domains: institutional mission, vision, and values; CEnR/CBPR/PEnR policies/practices; community processes/structures; function of formal community advisory boards; climate/culture for CEnR/CBPR; perceptions of institutional leadership for CEnR/CBPR/PEnR. The survey was piloted to a convenience sample of CEnR/CBPR/PEnR participants at each AHC site.

A sample aggregated across all sites consisting of community (n = 49) and academic (n = 50) participants perceived high levels of advocacy for CEnR/CBPR/PEnR among their AHC research teams. Participants indicated that institutional leadership supported CEnR/CBPR/PEnR in principle, but resources to build CEnR/CBPR/PEnR capacity at their respective institutions were lacking. Differences in responses from community and academic partners are summarized.

While limited by survey length and question adaptation, the findings contribute to identification of institutional barriers and facilitators to CEnR/CBPR/PEnR in AHCs. These findings are critically important to support and improve CEnR/CBPR/PEnR practice in academic institutions and to elevate community partner voices and needs for advancing community and patient partners’ research.

Accountable care models for Medicaid reimbursement aim to improve care quality and reduce costs by linking payments to performance. Oregon’s coordinated care organizations (CCOs) assume financial responsibility for their members and are incentivized to help clinics improve performance on specific quality metrics. This study explores how Oregon’s CCO model influences partnerships between payers and primary care clinics, focusing on strategies used to enhance screening and treatment for unhealthy alcohol use (UAU).

In this qualitative study, we conducted semi-structured interviews with informants from 12 of 13 Oregon CCOs active in 2019 and 2020. The interviews focused on payer–provider partnerships, specifically around UAU screening and treatment, which is a long-standing CCO metric. We used thematic analysis to identify key themes and causal-loop diagramming to uncover feedback dynamics and communicate key findings. Meadows’ leverage point framework was applied to categorize findings based on their potential to drive change.

CCO strategies to support clinics included building relationships, reporting on metric progress, providing EHR technical assistance, offering training, and implementing alternative payment methods. CCOs prioritized clinics with more members and those highly motivated. Our analysis showed that while the CCO model aligned goals between payers and clinics, it may perpetuate rural disparities by prioritizing larger, better-resourced clinics.

Oregon’s CCO model fosters partnerships centered on quality metrics but may unintentionally reinforce rural disparities by incentivizing support for larger clinics. Applying the Meadows framework highlighted leverage points within these partnerships.

Despite one-third of patients with cancer using cannabis for symptom management, little is known about their access to and usage of cannabis. Community Engagement (CE) studios involving community experts with chronic health conditions were used to inform a qualitative study on access to and use of cannabis products among patients with cancer.

We conducted two 2-hour CE studios with residents from Western NY (WNY) (N = 18). Our sample primarily included White and Black residents (56% vs. 39%). After a researcher-led 10-minute presentation, a community facilitator led the discussion, which focused on questions about challenges to cannabis use, recommendations for providers when discussing cannabis with patients, and community factors influencing use.

Community experts reported that state legalization of cannabis made it easier to access cannabis, but the costs of cannabis and distance to dispensaries hindered their ability to obtain it. Discrimination was also a key barrier to medical cannabis receipt. There were differences in the perceived safety of where to obtain cannabis (dispensaries vs. friends). Community experts wanted providers to be more informed and less biased about recommending cannabis. Community experts recommended conducting focus groups for the subsequent study to ask questions about cannabis use.

The CE studios encouraged us to switch formats from qualitative interviews to focus groups and provided guidance on question topics for the subsequent study. Incorporating community expert’s feedback through CE studios is an effective strategy to design more impactful studies.

Disparities in access to palliative care persist, particularly among underserved populations. We elicited recommendations for integrating community health workers (CHWs) into clinical care teams, by exploring perspectives on potential barriers and facilitators, ultimately aiming to facilitate equitable access to palliative care.

Twenty-five stakeholders were recruited for semi-structured interviews through purposive snowball sampling at three enrollment sites in the USA. Interviews were conducted to understand perspectives on the implementation of a CHW palliative care intervention for African American patients with advanced cancer. After transcription, primary and secondary coding were conducted. Framework analysis was utilized to refine the data, clarify themes, and generate recommendations for integrating CHWs into palliative care teams.

Our sample comprised 25 key informants, including 6 palliative care providers, 6 oncologists, 5 cancer center leaders, 2 cancer care navigators, and 6 CHWs. Thematic analysis revealed five domains of recommendations: (1) increasing awareness and understanding of the CHW role, (2) improving communication and collaboration, (3) ensuring access to resources, (4) enhancing CHW training, and (5) ensuring leadership support for integration. Informants shared barriers, facilitators, and recommendations within each domain based on their experiences.

Barriers to CHW integration within palliative care teams included limited awareness of the CHW role and inadequate training opportunities, alongside practical and logistical challenges. Conversely, promoting CHW engagement, providing adequate training, and ensuring support from leadership have the potential to aid integration.