ArticleBMJ open2019
Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 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
41 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
- Dissemination of trial results to study participants in Cambodia, Ethiopia and Pakistan: a qualitative study.BMJ open · 2026Trial
- Return of participant-level clinical trial results to participants: pilot of a simplified centralised approach.BMJ open · 2024Trial
- Testing approaches to sharing trial results with participants: The Show RESPECT cluster randomised, factorial, mixed methods trial.PLoS medicine · 2021Trial
- Online interest in calcitonin gene-related peptide-therapies: An infodemiology study using Google trends.Headache · 2026Article
- 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
- Closing the loop: Benefits and challenges of sharing clinical trial results with participants after trial close-out.BMC medical research methodology · 2026Article
- Experiences in dissemination of results of a community-based tuberculosis prevention trial in children.Trials · 2026Article
- Bridging the gap: Community insights on effectively sharing research findings with the public.Journal of clinical and translational science · 2026Article
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- Article
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- Ethical considerations for sharing aggregate results from pragmatic clinical trials.Clinical trials (London, England) · 2025Article
- How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.Journal of clinical and translational science · 2025Article
- Inclusion of Community-Based Participatory Research in High-Impact Medical Journals.Health equity · 2025Article
- Engagement with health research summaries via digital communication to All of Us participants.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Large language models in medicine: A review of current clinical trials across healthcare applications.PLOS digital health · 2024Review
- Leveraging artificial intelligence to summarize abstracts in lay language for increasing research accessibility and transparency.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Adequate information about clinical trial results must be given to participants.Nature medicine · 2024Article
- Assessing Food Access, Exercise, and Dietary History among Older African American Parishioners During the COVID-19 Pandemic (C-FED Study): Design, Opportunities, Challenges, and Lessons Learned.Journal of racial and ethnic health disparities · 2024Article
Corrections and comments
- Commented on by
Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveDissemination of research findings is central to research integrity and promoting discussion of new knowledge and its potential for translation into practice and policy. We investigated the frequency and format of dissemination to trial participants and patient groups.
designSurvey of authors of clinical trials indexed in PubMed in 2014-2015.
resultsQuestionnaire emailed to 19 321 authors; 3127 responses received (16%). Of these 3127 trials, 2690 had human participants and 1818 enrolled individual patients. Among the 1818, 498 authors (27%) reported having disseminated results to participants, 238 (13%) planned to do so, 600 (33%) did not plan to, 176 (10%) were unsure and 306 (17%) indicated 'other' or did not answer. Of the 498 authors who had disseminated, 198 (40%) shared academic reports, 252 (51%) shared lay reports, 111 (22%) shared both and 164 (33%) provided individualised study results. Of the 1818 trials, 577 authors (32%) shared/planned to share results with patients outside their trial by direct contact with charities/patient groups, 401 (22%) via patient communities, 845 (46%) via presentations at conferences with patient representation, 494 (27%) via mainstream media and 708 (39%) by online lay summaries. Relatively few of the 1818 authors reported dissemination was suggested by institutional bodies: 314 (17%) of funders reportedly suggested dissemination to trial participants, 252 (14%) to patient groups; 333 (18%) of ethical review boards reportedly suggested dissemination to trial participants, 148 (8%) to patient groups. Authors described many barriers to dissemination.
conclusionFewer than half the respondents had disseminated to participants (or planned to) and only half of those who had disseminated shared lay reports. Motivation to disseminate results to participants appears to arise within research teams rather than being incentivised by institutional bodies. Multiple factors need to be considered and various steps taken to facilitate wide dissemination of research to participants.
Indexed as
Identifiers
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.