ArticleJournal of clinical and translational science2025
What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data.
Article in Journal of clinical and translational science, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
8 citing papers in PubMed.
- Evaluating the utility of a patient and public involvement and engagement (PPIE) end-of-trial event to re-engage with cell-based therapy participants.Regenerative medicine · 2025Trial
- How Lived Experience Advisory Groups Contribute to the Design and Conduct of Mental Health Research.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Return of results is important to heterogeneous research participants: A single-site survey.Journal of clinical and translational science · 2026Article
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- Ten simple rules for research with humans.PLoS computational biology · 2025Article
- Supporting rapid innovation in research data capture and management: the REDCap external module framework.Journal of the American Medical Informatics Association : JAMIA · 2025Article
- Standards and infrastructure for multisite deployment of the research participant perception survey.JAMIA open · 2025Article
- Extending participant feedback beyond clinical studies: A modular system designed to connect researchers and participants.Journal of clinical and translational science · 2025Article
Corrections and comments
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Authors and funding
17 authors.
Funding
Abstract
Background: 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. Methods: 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. Results: 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. Conclusion: 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.