ArticleClinical trials (London, England)2016
Health research participants' preferences for receiving research results.
Article in Clinical trials (London, England), 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 54 papers, 1 of them a synthesis that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
54 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
- Testing approaches to sharing trial results with participants: The Show RESPECT cluster randomised, factorial, mixed methods trial.PLoS medicine · 2021Trial
- Dissemination Strategies From an HIV Self-Testing Intervention Among Adolescents and Young Adults in Nigeria: Crowdsourcing Open Call Study.JMIR formative research · 2026Article
- PROTOCOL: Comparative Effectiveness of Tools for Communicating Health Research Results to Study Participants and Others With Relevant Lived Experience: A Living Systematic Review of Randomized Controlled Trials.Campbell systematic reviews · 2026Review
- Closing the loop: Benefits and challenges of sharing clinical trial results with participants after trial close-out.BMC medical research methodology · 2026Article
- Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review.Interactive journal of medical research · 2025Review
- Article
- Returning Individualized Wearable Sensor Results to Older Adult Research Participants: A Pilot Study.The journals of gerontology. Series A, Biological sciences and medical sciences · 2025Article
- Using Multi-Site Research Results to Impact Local Pediatric Pain Evidence-Based Practice: Innovations and Outcomes.Worldviews on evidence-based nursing · 2025Article
- Ethical considerations for sharing aggregate results from pragmatic clinical trials.Clinical trials (London, England) · 2025Article
- Digital Information Exchange Between the Public and Researchers in Health Studies: Scoping Review.Journal of medical Internet research · 2025Article
- Returning individual wearable sensor results to participants: perspectives on challenges and lessons learned.Frontiers in digital health · 2025Article
- Dissemination innovation: Using found poetry to return study results to patients and partners facing cancer.PEC innovation · 2024Article
- Engagement with health research summaries via digital communication to All of Us participants.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Brief Report: Positive Caregiver Perceptions on Receiving Research Summary Reports in Autism Longitudinal Research.Journal of autism and developmental disorders · 2024Article
- Adequate information about clinical trial results must be given to participants.Nature medicine · 2024Article
- Healthy food delivery for type 2 diabetes management in rural clinics' patients: A comparative effectiveness randomized controlled trial protocol.Contemporary clinical trials · 2024Article
- Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research.European journal of cardiovascular nursing · 2024Article
- Returning individual research results to participants: Values, preferences, and expectations.Journal of clinical and translational science · 2024Article
- Using visual storytelling to share aggregate findings with families participating in clinical genomics research.Genetics in medicine open · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
backgroundParticipants in health research studies typically express interest in receiving the results from the studies in which they participate. However, participants' preferences and experiences related to receiving the results are not well understood. In general, the existing studies have had relatively small sample sizes and typically address specific and often sensitive issues within targeted populations.
methodsThis study used an online survey to explore attitudes and experiences of registrants in ResearchMatch, a large database of past, present, and potential health research participants. Survey respondents provided information related to whether or not they received research results from studies in which they participated, the methods used to communicate the results, their satisfaction with the results, and when and how they would like to receive research results from future studies. In all, 70,699 ResearchMatch registrants were notified of the study's topic. Of the 5207 registrants who requested full information about the study, 3381 respondents completed the survey.
resultsApproximately 33% of respondents with previous health research participation reported receiving the results. Approximately half of respondents with previous research participation reported no opportunity to request the results. However, almost all respondents said researchers should always or sometimes offer the results to participants. Respondents expressed particular interest in the results related to their (or a loved one's) health, as well as information about studies' purposes and any medical advances based on the results. In general, respondents' most preferred dissemination methods for the results were email and website postings. The least desirable dissemination methods for the results included Twitter, conference calls, and text messages. Across all the results, we compare the responses of respondents with and without previous research participation experience and those who have worked in research organizations versus those who have not. Compared to respondents who have previous participation experience, a greater proportion of respondents with no participation experience indicated that the results should always be shared with participants. Likewise, respondents with no participation experience placed higher importance on the receipt of each type of results' information included in the survey.
conclusionWe present findings from a survey assessing attitudes and experiences of a broad sample of respondents that addresses gaps in knowledge related to participants' preferences for receiving the results. The study's findings highlight the potential for inconsistency between respondents' expressed preferences to receive specific types of results via specific methods and researchers' unwillingness or inability to provide them. We present specific recommendations to shift the approach of new studies to investigate participants' preferences for receiving research results.
Indexed as
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What OpenQuestion holds
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.