title: Patient and service user engagement in research: a systematic review and synthesized framework.
abstract: BACKGROUND
  There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.
  
  
  OBJECTIVE
  This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE.
  
  
  METHODS
  A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).
  English-language studies, commentaries, grey literature and other sources (including systematic and non-systematic reviews) pertaining to patient and public involvement in biomedical and health services research.
  Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE-related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.
  
  
  RESULTS
  Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two-part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re-assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.
  
  
  CONCLUSIONS
  Efforts at developing a solid evidence base on PSUE are limited by the non-standard and non-empirical nature of much of the literature. Our proposed two-part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.
authors.affiliation: Division of Health Policy and Management, University of Minnesota, Minneapolis, MN, USA.
authors.forename: Nathan D
authors.initials: ND
authors.lastname: Shippee
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.|Henry Ford Hospital, Detroit, MI, USA.
authors.forename: Juan Pablo
authors.initials: JP
authors.lastname: Domecq Garces
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.|Department of Pediatrics, Children's Hospital of Michigan, Wayne State University School of Medicine/Detroit Medical Center, Detroit, MI, USA.
authors.forename: Gabriela J
authors.initials: GJ
authors.lastname: Prutsky Lopez
authors.affiliation: Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Zhen
authors.initials: Z
authors.lastname: Wang
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Tarig A
authors.initials: TA
authors.lastname: Elraiyah
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.|Saint Joseph Mercy Hospital, Ann Arbor, MI, USA.
authors.forename: Mohammed
authors.initials: M
authors.lastname: Nabhan
authors.affiliation: Endocrinology Division, Mayo Clinic, Rochester, MN, USA.
authors.forename: Juan P
authors.initials: JP
authors.lastname: Brito
authors.affiliation: Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Kasey
authors.initials: K
authors.lastname: Boehmer
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Rim
authors.initials: R
authors.lastname: Hasan
authors.affiliation: Knowledge Synthesis Program, Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, MN, USA.
authors.forename: Belal
authors.initials: B
authors.lastname: Firwana
authors.affiliation: Mayo Clinic Libraries, Mayo Clinic, Rochester, MN, USA.
authors.forename: Patricia J
authors.initials: PJ
authors.lastname: Erwin
authors.affiliation: Mayo Clinic, Rochester, MN, USA.|Center for the Science of Healthcare Delivery, Mayo Clinic, Rochester, MN, USA.
authors.forename: Victor M
authors.initials: VM
authors.lastname: Montori
authors.affiliation: Mayo Clinic, Rochester, MN, USA.|Knowledge Synthesis Program, Mayo Clinic, Rochester, MN, USA.
authors.forename: M Hassan
authors.initials: MH
authors.lastname: Murad
mesh_terms: D026683:Advisory Committees; D001294:Attitude to Health; D035843:Biomedical Research; D055812:Community-Based Participatory Research; D006291:Health Policy; D006302:Health Services Research; D006801:Humans; D010358:Patient Participation
keywords: patient and public involvement; patient engagement; systematic review