Patient engagement in research: a systematic review

BMC Health Services Research Patient engagement in research: a systematic review Juan Pablo Domecq 1 2 5 Gabriela Prutsky 1 2 5 Tarig Elraiyah 1 5 Zhen Wang 1 4 5 Mohammed Nabhan 1 5 Nathan Shippee 1 4 5 Juan Pablo Brito 1 5 6 Kasey Boehmer 1 5 Rim Hasan 1 5 7 Belal Firwana 1 5 7 Patricia Erwin 1 3 David Eton 1 4 5 Jeff Sloan 1 4 5 Victor Montori 1 2 4 5 6 Noor Asi 1 5 Abd Moain Abu Dabrh 1 5 Mohammad Hassan Murad 0 1 4 5 0 Division of Preventive, Occupational and Aerospace Medicine, Mayo Clinic , Rochester, MN , USA 1 Knowledge and Evaluation Research Unit, Mayo Clinic , Rochester, MN , USA 2 Unidad de Conocimiento y Evidencia , Lima , Peru 3 Mayo Clinic Libraries, Mayo Clinic , Rochester, MN , USA 4 Department of Health Sciences Research, Mayo Clinic , Rochester, MN , USA 5 Center for the Science of Healthcare Delivery, Mayo Clinic , Rochester, Minnesota , USA 6 Division of Endocrinology, Diabetes, Metabolism, Nutrition, Mayo Clinic , Rochester, MN , USA 7 Department of Internal Medicine, University of Missouri , Columbia, MO , USA 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. Systematic review; Patient; Engagement; Patient centered outcomes research - Background The role of patient in research ranges from a passive one (patient is a data point) to an active one (patient is a researcher). The active participation in research (or patient engagement in research) can potentially lead to improvement in the credibility of results (higher rates of enrollment and retention) and in their direct applicability to patients (by asking pertinent questions about patientimportant outcomes). Also, there is an overarching ethical mandate for patient participation in research as a manifestation of the democratization of the research process [1-3]. Patient engagement in the planning and execution of research could also improve its translation into clinical practice [4]. In all, there is growing consensus about the crucial role of patient involvement in research, which may improve the value of healthcare research. In the United Kingdom, involvement of stakeholders in social and health care policy has been well recognized since 1996. The British National Institute of Health recognized that individual and community stakeholders determine important aspects of health care services and research, and the project INVOLVE was established to achieve this engagement [5,6]. In the United States, the Patient Centered Outcomes Research Institute (PCORI) was established in 2010 and placed great importance on the engagement of patients and other stakeholders in the research process [7]. Previous systematic reviews have described various aspects of the engagement process [8,9]. However, it remains unclear who to engage or when, or how to perform this task [8-10]. Therefore, PCORI commissioned a systematic review that aims at synthesizing the existing evidence about patient engagement in research with the goal of helping researchers in designing and conducting meaningful patient engagement in healthcare research. In this sys (...truncated)