Patient engagement in research: a systematic review

Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systema...

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Veröffentlicht in:BMC health services research Jg. 14; H. 1; S. 89
Hauptverfasser: Domecq, Juan Pablo, Prutsky, Gabriela, Elraiyah, Tarig, Wang, Zhen, Nabhan, Mohammed, Shippee, Nathan, Brito, Juan Pablo, Boehmer, Kasey, Hasan, Rim, Firwana, Belal, Erwin, Patricia, Eton, David, Sloan, Jeff, Montori, Victor, Asi, Noor, Abu Dabrh, Abd Moain, Murad, Mohammad Hassan
Format: Journal Article
Sprache:Englisch
Veröffentlicht: London BioMed Central 26.02.2014
BioMed Central Ltd
Springer Nature B.V
Schlagworte:
Advisory Committees
Biomedical Research - methods
Citation management software
Health Administration
Health care
Health care policy
Health Informatics
Humans
Institutional repositories
Medical research
Medicine
Medicine & Public Health
Nursing Research
Patient Participation
Patients
Public Health
Quality
Randomized Controlled Trials as Topic - methods
Research Article
Research Subjects
Researchers
safety and outcomes
Search engines
Search strategies
Systematic review
Trends
Engagement
Systematic review
Patient
Patient centered outcomes research
ISSN:1472-6963, 1472-6963
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Zusammenfassung:Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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ISSN:1472-6963
1472-6963
DOI:10.1186/1472-6963-14-89