ArticleContemporary clinical trials communications2023
Return of aggregate results to study participants: Facilitators, barriers, and recommendations.
Article in Contemporary clinical trials communications, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Current global practice and implications for future research on disseminating health research results to study participants: A systematic review.PLoS medicine · 2025Pooled it
- Return of Research Results to Participants in Longitudinal Cohort Studies in Health Research: Findings From 24 Cohorts of the Amsterdam Cohort Hub.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study.Journal of Parkinson's disease · 2026Article
- A 360 Degree Qualitative Ethical Assessment of Reporting Patient Reported Outcomes.Journal of empirical research on human research ethics : JERHRE · 2026Article
- Bridging the Gap: Recommendations for Sustainable Research Partnerships Between Community Health and Academic Health Centers.Journal of health care for the poor and underserved · 2026Article
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- Bridging the gap: Community insights on effectively sharing research findings with the public.Journal of clinical and translational science · 2026Article
- Returning aggregate research results to participants: a scoping review of current practices, preferences and challenges.BMJ open · 2025Article
- Article
- SPIRIT 2025 explanation and elaboration: updated guideline for protocols of randomised trials.BMJ (Clinical research ed.) · 2025Article
- Ethical considerations for sharing aggregate results from pragmatic clinical trials.Clinical trials (London, England) · 2025Article
- Using Multi-Site Research Results to Impact Local Pediatric Pain Evidence-Based Practice: Innovations and Outcomes.Worldviews on evidence-based nursing · 2025Article
- Exploratory interviews with Australian clinical research staff on how they communicate with participants.BMC medical research methodology · 2024Article
- Youth and family involvement in the development of a plain language trial results communication tool: CommuniKIDS.Research involvement and engagement · 2023Article
- Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science.Ethics & human researchArticle
- Activity tracking devices in pregnancy: Understanding the participant experience in a longitudinal birth cohort.Women's health (London, England)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Background: Most researchers and study participants believe that the summary, or aggregate, results of health research should be returned to study participants. However, researchers often do not return aggregate results. A better understanding of the impediments to results return could support improvements in this practice. Methods: This qualitative study convened eight virtual focus groups, four with investigators and four with patient partners from research studies funded by the Patient-Centered Outcomes Research Institute (PCORI). In total, 23 investigators and 20 partners participated. We explored perspectives, experiences, influences, and recommendations related to aggregate results return. Results: Focus group participants described the ethical importance of returning aggregate results, as well as the benefits to study participants. They also noted important impediments to results return, emphasizing IRB and logistical challenges and describing a lack of support for the practice both on the part of institutions and the field at large. Participants highlighted the value of patients and caregivers' perspectives and contributions to results return, which focused on returning the most relevant findings through effective channels and formats. They further emphasized the importance of planning and identified resources that could support results return. Conclusion: Researchers, funders, and the field can better facilitate results return by promoting standardized processes in research, such as the earmarking of funds for results return and inclusion of results returns milestones in research plans. More intentional policies, infrastructures, and resources that support results return may lead to more widespread return of study results to those who make these studies possible.
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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.