Abstract
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.
| Original language | English (US) |
|---|---|
| Article number | 89 |
| Journal | BMC Health Services Research |
| Volume | 14 |
| DOIs | |
| State | Published - Feb 26 2014 |
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Keywords
- Engagement
- Patient
- Patient centered outcomes research
- Systematic review
ASJC Scopus subject areas
- Health Policy
- Medicine(all)
Cite this
Patient engagement in research : A systematic review. / Domecq, Juan Pablo; Prutsky, Gabriela; Elraiyah, Tarig; Wang, Zhen; Nabhan, Mohammed; Shippee, Nathan; Brito Campana, Juan; Boehmer, Kasey; Hasan, Rim; Firwana, Belal; Erwin, Patricia; Eton, David T; Sloan, Jeff A; Montori, Victor Manuel; Asi, Noor; Abu Dabrh, Abd Moain; Murad, Mohammad H.
In: BMC Health Services Research, Vol. 14, 89, 26.02.2014.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Patient engagement in research
T2 - A systematic review
AU - Domecq, Juan Pablo
AU - Prutsky, Gabriela
AU - Elraiyah, Tarig
AU - Wang, Zhen
AU - Nabhan, Mohammed
AU - Shippee, Nathan
AU - Brito Campana, Juan
AU - Boehmer, Kasey
AU - Hasan, Rim
AU - Firwana, Belal
AU - Erwin, Patricia
AU - Eton, David T
AU - Sloan, Jeff A
AU - Montori, Victor Manuel
AU - Asi, Noor
AU - Abu Dabrh, Abd Moain
AU - Murad, Mohammad H
PY - 2014/2/26
Y1 - 2014/2/26
N2 - 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.
AB - 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.
KW - Engagement
KW - Patient
KW - Patient centered outcomes research
KW - Systematic review
UR - http://www.scopus.com/inward/record.url?scp=84897626401&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84897626401&partnerID=8YFLogxK
U2 - 10.1186/1472-6963-14-89
DO - 10.1186/1472-6963-14-89
M3 - Article
VL - 14
JO - BMC Health Services Research
JF - BMC Health Services Research
SN - 1472-6963
M1 - 89
ER -