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

被引：35

作者：

Fergusson D. ^{[1
,8
]}

Monfaredi Z. ^{[1
]}

Pussegoda K. ^{[1
]}

Garritty C. ^{[1
]}

Lyddiatt A. ^{[2
]}

Shea B. ^{[1
]}

Duffett L. ^{[1
,3
]}

Ghannad M. ^{[4
]}

Montroy J. ^{[1
]}

Murad M.H. ^{[5
]}

Pratt M. ^{[1
]}

Rader T. ^{[6
]}

Shorr R. ^{[7
]}

Yazdi F. ^{[1
]}

机构：

[1] Ottawa Hospital Research Institute, Ottawa, ON

[2] Patient Partner SPOR National Steering Committee, Ottawa, ON

[3] Department of Hematology, Ottawa Hospital Research Institute, Ottawa, ON

[4] Amsterdam Public Health Research Institute, Amsterdam

[5] Mayo Clinic, Rochester, MN

[6] Canadian Agency for Drugs and Technologies in Health, Ottawa, ON

[7] The Ottawa Hospital, Ottawa, ON

[8] Centre for Practice-Changing Research, Office L1298a, 501 Smyth Road, Box 201B, Ottawa, K1H 8L6, ON

来源：

Research Involvement and Engagement | / 4卷 / 1期

关键词：

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

D O I：

10.1186/s40900-018-0099-x

中图分类号：

学科分类号：

摘要：

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. © The Author(s).

引用

共 44 条

[1]

Deverka P.A., Lavallee D.C., Desai P.J., Esmail L.C., Ramsey S.D., Veenstra D.L., Et al., Stakeholder participation in comparative effectiveness research: Defining a framework for effective engagement, J Comp Eff Res, 1, pp. 181-194, (2012)

[2]

Mullins C.D., Abdulhalim A.M., Lavallee D.C., Continuous patient engagement in comparative effectiveness research, JAMA, 307, pp. 1587-1588, (2012)

[3]

The Challenge: Health Research and Health Care

[4]

Shah S.G., Robinson I., Benefits of and barriers to involving users in medical device technology development and evaluation, Int J Technol Assess Health Care, 23, pp. 131-137, (2007)

[5]

Swartz L.J., Callahan K.A., Butz A.M., Rand C.S., Kanchanaraksa S., Diette G.B., Et al., Methods and issues in conducting a community-based environmental randomized trial, Environ Res, 95, pp. 156-165, (2004)

[6]

Edwards V., Wyatt K., Logan S., Britten N., Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy, Health Expect, 14, pp. 429-438, (2011)

[7]

Domecq J.P., Prutsky G., Elraiyah T., Wang Z., Nabhan M., Shippee N., Et al., Patient engagement in research: A systematic review, BMC Health Serv Res, 14, (2014)

[8]

Selby J.V., Slutsky J.R., Practicing partnered research, J Gen Intern Med, 29, pp. 814-816, (2014)

[9]

Hysong S.J., Woodard L., Garvin J.H., Murawsky J., Petersen L.A., Publishing protocols for partnered research, J Gen Intern Med, 29, pp. 820-824, (2014)

[10]

Costlow M.R., Landsittel D.P., James A., Kahn J.M., Morton S.C., Model for a patient-centered comparative effectiveness research center, Clin Transl Sci, 8, pp. 155-159, (2015)

← 1 2 3 4 5 →