Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 Oct 21;9(10):e032701.
doi: 10.1136/bmjopen-2019-032701.

Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed

Sara Schroter  1 , Amy Price  2 , Mario Malički  3 , Tessa Richards  2 , Mike Clarke  4
Affiliations

Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed

Sara Schroter et al. BMJ Open. .

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.

Keywords: dissemination; participants; patients and the public; research results.

PubMed Disclaimer

Conflict of interest statement

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.

Figures

Figure 1
Figure 1
Flowchart indicating response rate and eligible trials.
See this image and copyright information in PMC

Comment in

References

    1. Tetroe JM, Graham ID, Foy R, et al. . Health research funding agencies' support and promotion of knowledge translation: an international study. Milbank Q 2008;86:125–55. 10.1111/j.1468-0009.2007.00515.x - DOI - PMC - PubMed
    1. Wilson PM, Petticrew M, Calnan MW, et al. . Does dissemination extend beyond publication: a survey of a cross section of public funded research in the UK. Implementation Sci 2010;5 10.1186/1748-5908-5-61 - DOI - PMC - PubMed
    1. Scherer RW, Meerpohl JJ, Pfeifer N, et al. . Full publication of results initially presented in Abstracts. Cochrane Database Syst Rev 2018;11 10.1002/14651858.MR000005.pub4 - DOI - PMC - PubMed
    1. Rawat S, Meena S. Publish or perish: where are we heading? J Res Med Sci 2014;19:87–9. - PMC - PubMed
    1. Fernandez CV, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. IRB 2003;25:12–19. 10.2307/3564300 - DOI - PubMed

Publication types

LinkOut - more resources