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Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed
  1. Sara Schroter1,
  2. Amy Price1,
  3. Mario Malički2,
  4. Tessa Richards1,
  5. Mike Clarke3
  1. 1 The BMJ, London, UK
  2. 2 Department of Research in Biomedicine and Health, University of Split School of Medicine, Split, Croatia
  3. 3 Northern Ireland Methodology Hub, Queen's University Belfast, Belfast, UK
  1. Correspondence to Dr Sara Schroter; sschroter{at}bmj.com

Abstract

Objective Dissemination 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.

Design Survey of authors of clinical trials indexed in PubMed in 2014–2015.

Results Questionnaire 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.

Conclusion Fewer 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.

  • dissemination
  • patients and the public
  • participants
  • research results

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors SS and AP wrote the study protocol. SS administered the surveys, conducted the data analysis and wrote the first draft of the manuscript. MM conducted the PubMed searches. All authors (SS, AP, TR, MM and MC) developed the survey questions, commented on the results, helped write the paper for publication, approved the final version of the paper and agreed on the dissemination plan.

  • Funding MM was partially funded by Croatian Science Foundation, grant No. IP-2014-09-7672 Professionalism in Health Care.

  • Competing interests SS and TR are employed by The BMJ which has a patient partnership initiative. AP works on a freelance basis for The BMJ and is a senior research advisor at Stanford University, where she is responsible for advising and seeking funding on dissemination of research studies. AP and TR are patients with long-term medical conditions and are committed to increasing the dissemination of results to patients. MC has been involved in many clinical trials and systematic reviews, such that he has had to organise the dissemination of his own research and use material disseminated by others. He seeks funding for these trials and reviews, as well as for research into methodology, including dissemination.

  • Patient consent for publication Not required.

  • Ethics approval University of Oxford Central University Research Ethics Committee (MS-IDREC-C1-2013-174).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Deidentified participant data are available from the corresponding author (sschroter@bmj.com) on reasonable request.