A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024
Abstract Background In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRI...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-03-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-024-00563-5 |
| _version_ | 1797246953365438464 |
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| author | Ellen B. M. Elsman Maureen Smith Catherine Hofstetter Frank Gavin Estelle Jobson Sarah Markham Juanna Ricketts Ami Baba Nancy J. Butcher Martin Offringa |
| author_facet | Ellen B. M. Elsman Maureen Smith Catherine Hofstetter Frank Gavin Estelle Jobson Sarah Markham Juanna Ricketts Ami Baba Nancy J. Butcher Martin Offringa |
| author_sort | Ellen B. M. Elsman |
| collection | DOAJ |
| description | Abstract Background In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024. Patients and public members formed a small but impactful stakeholder group. We critically evaluated the PPI component in this project and developed recommendations for conducting PPI when developing reporting guidelines. Main text A patient partner was an integral research team member at the project development and grant application stage. Once the project started, five patient and public contributors (PPCs) were recruited to participate in the Delphi study; three PPCs contributed to subsequent steps. We collected quantitative feedback through surveys; qualitative feedback was garnered through a focus group discussion after the Delphi study and through debrief meetings after subsequent project activities. Feedback was thematically combined with reflections from the research team, and was predominantly positive. The following themes emerged: importance of PPI partnership, number of PPCs involved, onboarding, design of Delphi surveys, flexibility in the process, complexity of PPI in methodological research, and power imbalances. Impacts of PPI on the content and presentation of the reporting guideline were evident, and reciprocal learning between PPCs and the research team occurred throughout the project. Lessons learned were translated into 17 recommendations for future projects. Conclusion Integrating PPI in the development of PRISMA-COSMIN for OMIs 2024 was feasible and considered valuable by PPCs and the research team. Our approach can be applied by others wishing to integrate PPI in developing reporting guidelines. |
| first_indexed | 2024-04-24T19:50:59Z |
| format | Article |
| id | doaj.art-b82280a99bfd49fb8573212602c0ab87 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-04-24T19:50:59Z |
| publishDate | 2024-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-b82280a99bfd49fb8573212602c0ab872024-03-24T12:36:58ZengBMCResearch Involvement and Engagement2056-75292024-03-0110111110.1186/s40900-024-00563-5A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024Ellen B. M. Elsman0Maureen Smith1Catherine Hofstetter2Frank Gavin3Estelle Jobson4Sarah Markham5Juanna Ricketts6Ami Baba7Nancy J. Butcher8Martin Offringa9Child Health Evaluative Sciences, The Hospital for Sick Children Research InstitutePatient Partner, Cochrane Consumer NetworkPatient and Public Contributor/Advisor, OMERACT Patient Research PartnerPatient and Public Contributor, Chair of the Public Advisory Council of The Health Data Research Network (Canada)Patient and Public Contributor, EUPATI FellowPatient and Public Contributor, King’s College LondonPatient and Public ContributorChild Health Evaluative Sciences, The Hospital for Sick Children Research InstituteChild Health Evaluative Sciences, The Hospital for Sick Children Research InstituteChild Health Evaluative Sciences, The Hospital for Sick Children Research InstituteAbstract Background In recent years, projects to develop reporting guidelines have attempted to integrate the perspectives of patients and public members. Best practices for patient and public involvement (PPI) in such projects have not yet been established. We recently developed an extension of PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), to be used for systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) for OMIs 2024. Patients and public members formed a small but impactful stakeholder group. We critically evaluated the PPI component in this project and developed recommendations for conducting PPI when developing reporting guidelines. Main text A patient partner was an integral research team member at the project development and grant application stage. Once the project started, five patient and public contributors (PPCs) were recruited to participate in the Delphi study; three PPCs contributed to subsequent steps. We collected quantitative feedback through surveys; qualitative feedback was garnered through a focus group discussion after the Delphi study and through debrief meetings after subsequent project activities. Feedback was thematically combined with reflections from the research team, and was predominantly positive. The following themes emerged: importance of PPI partnership, number of PPCs involved, onboarding, design of Delphi surveys, flexibility in the process, complexity of PPI in methodological research, and power imbalances. Impacts of PPI on the content and presentation of the reporting guideline were evident, and reciprocal learning between PPCs and the research team occurred throughout the project. Lessons learned were translated into 17 recommendations for future projects. Conclusion Integrating PPI in the development of PRISMA-COSMIN for OMIs 2024 was feasible and considered valuable by PPCs and the research team. Our approach can be applied by others wishing to integrate PPI in developing reporting guidelines.https://doi.org/10.1186/s40900-024-00563-5Patient and public involvement (PPI)Patient engagementReporting guidelineSystematic reviewsOutcome measurement instrumentPRISMA |
| spellingShingle | Ellen B. M. Elsman Maureen Smith Catherine Hofstetter Frank Gavin Estelle Jobson Sarah Markham Juanna Ricketts Ami Baba Nancy J. Butcher Martin Offringa A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 Research Involvement and Engagement Patient and public involvement (PPI) Patient engagement Reporting guideline Systematic reviews Outcome measurement instrument PRISMA |
| title | A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 |
| title_full | A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 |
| title_fullStr | A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 |
| title_full_unstemmed | A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 |
| title_short | A blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments: PRISMA-COSMIN for OMIs 2024 |
| title_sort | blueprint for patient and public involvement in the development of a reporting guideline for systematic reviews of outcome measurement instruments prisma cosmin for omis 2024 |
| topic | Patient and public involvement (PPI) Patient engagement Reporting guideline Systematic reviews Outcome measurement instrument PRISMA |
| url | https://doi.org/10.1186/s40900-024-00563-5 |
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