title: Patient engagement in research: a systematic review.
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.
authors.forename: Juan Pablo
authors.initials: JP
authors.lastname: Domecq
authors.forename: Gabriela
authors.initials: G
authors.lastname: Prutsky
authors.forename: Tarig
authors.initials: T
authors.lastname: Elraiyah
authors.forename: Zhen
authors.initials: Z
authors.lastname: Wang
authors.forename: Mohammed
authors.initials: M
authors.lastname: Nabhan
authors.forename: Nathan
authors.initials: N
authors.lastname: Shippee
authors.forename: Juan Pablo
authors.initials: JP
authors.lastname: Brito
authors.forename: Kasey
authors.initials: K
authors.lastname: Boehmer
authors.forename: Rim
authors.initials: R
authors.lastname: Hasan
authors.forename: Belal
authors.initials: B
authors.lastname: Firwana
authors.forename: Patricia
authors.initials: P
authors.lastname: Erwin
authors.forename: David
authors.initials: D
authors.lastname: Eton
authors.forename: Jeff
authors.initials: J
authors.lastname: Sloan
authors.forename: Victor
authors.initials: V
authors.lastname: Montori
authors.forename: Noor
authors.initials: N
authors.lastname: Asi
authors.forename: Abd Moain Abu
authors.initials: AM
authors.lastname: Dabrh
authors.affiliation: Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA. murad.mohammad@mayo.edu.
authors.forename: Mohammad Hassan
authors.initials: MH
authors.lastname: Murad
mesh_terms: D026683:Advisory Committees; D035843:Biomedical Research / Q000379:methods*; D006801:Humans; D010358:Patient Participation; D016032:Randomized Controlled Trials as Topic / Q000379:methods; D035842:Research Subjects