Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot.

Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply...

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Publicado en:Health Expectations Vol. 22; no. 4; pp. 785 - 802
Autores principales: Greenhalgh, Trisha, Hinton, Lisa, Finlay, Teresa, Macfarlane, Alastair, Fahy, Nick, Clyde, Ben, Chant, Alan
Formato: research systematic review tables/charts Journal Article
Publicado: Wiley-Blackwell Aug2019
Acceso en línea:Ver este registro en EBSCOhost
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        atl: Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot.
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          Greenhalgh, Trisha
          Hinton, Lisa
          Finlay, Teresa
          Macfarlane, Alastair
          Fahy, Nick
          Clyde, Ben
          Chant, Alan
        affil: Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford UK
      sug:
        subj:
          Conceptual Framework
          Consumer Participation
          Research, Medical
          Research Subjects
          Support, Psychosocial
          Human
          Systematic Review
          Study Design
          Phenomenology
          PubMed
          CINAHL Database
          Embase
          Psycinfo
          Data Analysis Software
          Research by Type and Subject
          Models, Theoretical
          Collaboration
      ab: Background: Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives: To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy: Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria: Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis: Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results: Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a "build your own framework" co‐design workshop. Conclusion: The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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