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      Patient and service user engagement in research: a systematic review and synthesized framework

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          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.

          Design

          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).

          Eligible sources

          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.

          Data extracted

          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.

          Discussion and 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.

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          Author and article information

          Contributors
          Role: Assistant Professor
          Role: Research Fellow, Internal Medicine Resident
          Role: Research Fellow, Pediatric Resident
          Role: Assistant Professor
          Role: Research Fellow
          Role: Research Fellow, Internal Medicine Resident
          Role: Endocrine Clinical and Research Fellow
          Role: Administrative Assistant
          Role: Research Collaborator
          Role: Research Collaborator
          Role: Lead Reference Librarian
          Role: Professor of Medicine, Director of the Healthcare Delivery Research Program
          Role: Professor of Medicine, Director
          Journal
          Health Expect
          Health Expect
          10.1111/(ISSN)1369-7625
          HEX
          Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
          John Wiley and Sons Inc. (Hoboken )
          1369-6513
          1369-7625
          03 June 2013
          October 2015
          : 18
          : 5 ( doiID: 10.1111/hex.2015.18.issue-5 )
          : 1151-1166
          Affiliations
          [ 1 ] Division of Health Policy and Management University of Minnesota Minneapolis MN USA
          [ 2 ] Knowledge Synthesis Program, Knowledge and Evaluation Research Unit Mayo Clinic Rochester MN USA
          [ 3 ] Henry Ford Hospital Detroit MI USA
          [ 4 ] Department of Pediatrics Children's Hospital of Michigan Wayne State University School of Medicine/Detroit Medical Center Detroit MI USA
          [ 5 ] Knowledge and Evaluation Research Unit Mayo Clinic Rochester MN USA
          [ 6 ] Saint Joseph Mercy Hospital Ann Arbor MI USA
          [ 7 ] Endocrinology Division Mayo Clinic Rochester MN USA
          [ 8 ] Mayo Clinic Libraries Mayo Clinic Rochester MN USA
          [ 9 ] Mayo Clinic Rochester MN USA
          [ 10 ] Center for the Science of Healthcare Delivery Mayo Clinic Rochester MN USA
          [ 11 ] Knowledge Synthesis Program Mayo Clinic Rochester MN USA
          Author notes
          [*] [* ] Correspondence

          Nathan D. Shippee PhD

          Assistant Professor

          Division of Health Policy and Management

          School of Public Health

          University of Minnesota

          420 Delaware Street SE

          Minneapolis

          MN 55455

          USA

          E‐mail: nshippee@ 123456umn.edu

          Article
          PMC5060820 PMC5060820 5060820 HEX12090
          10.1111/hex.12090
          5060820
          23731468
          938118bb-a6f8-46e9-9335-8d4a79a42f4d
          © 2013 John Wiley & Sons Ltd
          History
          : 08 May 2013
          Page count
          Pages: 16
          Funding
          Funded by: Patient‐Centered Outcomes Research Institute (PCORI)
          Categories
          Original Article
          Original Research Papers
          Custom metadata
          2.0
          hex12090
          October 2015
          Converter:WILEY_ML3GV2_TO_NLMPMC version:4.9.4 mode:remove_FC converted:06.10.2016

          patient and public involvement,patient engagement,systematic review

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