Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot
Abstract 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...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2019-08-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.12888 |
| _version_ | 1819156253674307584 |
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| author | Trisha Greenhalgh Lisa Hinton Teresa Finlay Alastair Macfarlane Nick Fahy Ben Clyde Alan Chant |
| author_facet | Trisha Greenhalgh Lisa Hinton Teresa Finlay Alastair Macfarlane Nick Fahy Ben Clyde Alan Chant |
| author_sort | Trisha Greenhalgh |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-12-22T15:49:56Z |
| format | Article |
| id | doaj.art-a8f464a04387462e963d3861de500424 |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-12-22T15:49:56Z |
| publishDate | 2019-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-a8f464a04387462e963d3861de5004242022-12-21T18:20:56ZengWileyHealth Expectations1369-65131369-76252019-08-0122478580110.1111/hex.12888Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilotTrisha Greenhalgh0Lisa Hinton1Teresa Finlay2Alastair Macfarlane3Nick Fahy4Ben Clyde5Alan Chant6Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UKNuffield Department of Primary Care Health Sciences University of Oxford Oxford UKNuffield Department of Primary Care Health Sciences University of Oxford Oxford UKNorth Central London Academic Foundation Programme London UKNuffield Department of Primary Care Health Sciences University of Oxford Oxford UKNuffield Department of Primary Care Health Sciences University of Oxford Oxford UKNuffield Department of Primary Care Health Sciences University of Oxford Oxford UKAbstract 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.https://doi.org/10.1111/hex.12888codesignframeworkhermeneutic reviewpatient and public involvementsystematic review |
| spellingShingle | Trisha Greenhalgh Lisa Hinton Teresa Finlay Alastair Macfarlane Nick Fahy Ben Clyde Alan Chant Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot Health Expectations codesign framework hermeneutic review patient and public involvement systematic review |
| title | Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot |
| title_full | Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot |
| title_fullStr | Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot |
| title_full_unstemmed | Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot |
| title_short | Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot |
| title_sort | frameworks for supporting patient and public involvement in research systematic review and co design pilot |
| topic | codesign framework hermeneutic review patient and public involvement systematic review |
| url | https://doi.org/10.1111/hex.12888 |
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