The prevalence of patient engagement in published trials: A systematic review

Dean Fergusson, Zarah Monfaredi, Kusala Pussegoda, Chantelle Garritty, Anne Lyddiatt, Beverley Shea, Lisa Duffett, Mona Ghannad, Joshua Montroy, Mohammad H Murad, Misty Pratt, Tamara Rader, Risa Shorr, Fatemeh Yazdi

Research output: Contribution to journalArticle

13 Scopus citations

Abstract

Background: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181–94, JAMA 2012, 307:1587–8]. Since POR’s inception, questions have been raised as to how best to achieve this goal. We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials. Methods: The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included.Results: Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results. Conclusions: The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined.

Original languageEnglish (US)
Article number17
JournalResearch Involvement and Engagement
Volume4
Issue number1
DOIs
StatePublished - May 22 2018

Keywords

  • Clinical trials
  • Patient engagement
  • Patient-oriented research
  • Systematic review

ASJC Scopus subject areas

  • Medicine(all)
  • Health Professions(all)
  • Health(social science)

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    Fergusson, D., Monfaredi, Z., Pussegoda, K., Garritty, C., Lyddiatt, A., Shea, B., Duffett, L., Ghannad, M., Montroy, J., Murad, M. H., Pratt, M., Rader, T., Shorr, R., & Yazdi, F. (2018). The prevalence of patient engagement in published trials: A systematic review. Research Involvement and Engagement, 4(1), [17]. https://doi.org/10.1186/s40900-018-0099-x