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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

Elsman, Ellen B. M., Smith, Maureen, Hofstetter, Catherine, Gavin, Frank, Jobson, Estelle, Markham, Sarah, Ricketts, Juanna, Baba, Ami, Butcher, Nancy J., Offringa, Martin·2024·Research Involvement and Engagement
DOI 10.1186/s40900-024-00563-5PMC PMC10956212
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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.

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Fig. 1 PPI component activities at each step in the PRISMA-COSMIN for OMIs’ guideline development. E&E, Explanation and Elaboration; OMIs, outcome measurement instruments; PPI, patient and public involvement; PPCs, patient and public contributors
Fig. 1 PPI component activities at each step in the PRISMA-COSMIN for OMIs’ guideline development. E&E, Explanation and Elaboration; OMIs, outcome measurement instruments; PPI, patient and public involvement; PPCs, patient and public contributorsCC BY · PubMed Central
Fig. 2 Blueprint: 17 steps to meaningful Patient and Public Involvement (PPI) in reporting guideline development
Fig. 2 Blueprint: 17 steps to meaningful Patient and Public Involvement (PPI) in reporting guideline developmentCC BY · PubMed Central

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Citations

Cites

Research works printed but not linked: 15

  1. Butcher NJ, Monsour A, Mew EJ, Chan A-W, Moher D, Mayo-Wilson E, et al. Guidelines for reporting outcomes in trial protocols: The SPIRIT-outcomes 2022 extension. JAMA. 2022;328(23):2345–56. · DOI · Paper page
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  3. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Int J Surg. 2021;88: 105906. · DOI · Paper page
  4. Elsman EB, Butcher NJ, Mokkink LB, Terwee CB, Tricco A, Gagnier JJ, et al. Study protocol for developing, piloting and disseminating the PRISMA-COSMIN guideline: a new reporting guideline for systematic reviews of outcome measurement instruments. Syst Rev. 2022;11(1):121. · DOI
  5. Elsman EB, Mokkink LB, Terwee CB, Beaton D, Gagnier JJ, Tricco AC, et al. Guideline for reporting systematic reviews of outcome measurement instruments (OMIs): PRISMA-COSMIN for OMIs 2024. Accepted for publication. 2024 · DOI · Paper page
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  12. Smith M, Potter B, Vanderhout S, Howie A. Patient partnership in a pediatric rare disease research network: mutual learning for meaningful research. In: Reszel J, McCutcheon C, Kothari A, Graham I, editors. How We Work Together: The Integrated Knowledge Translation Research Network Casebook. Ottawa: Integrated Knowledge Translation Research Network; 2022.
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  15. Vollebregt M, Kuiack A, Coughler C, Bardell T, Archibald L. Establishing practice-based research partnerships with educational speech-language pathologists. In: Reszel J, McCutcheon C, Kothari A, Graham I, editors. How We Work Together: The Integrated Knowledge Translation Research Network Casebook. Ottawa: Integrated Knowledge Translation Research Network; 2022.

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Metadata

Authors
Elsman, E. B. M., Smith, M., Hofstetter, C., Gavin, F., Jobson, E., Markham, S., Ricketts, J., Baba, A., Butcher, N. J., & Offringa, M.
Venue
Research Involvement and Engagement
Publisher
Springer Science and Business Media LLC
Published
2024-03-21
Volume
10
Issue
1
ISSN
2056-7529
DOI
10.1186/s40900-024-00563-5
PMC
PMC10956212
Cited by
15
References
4
Language
en
Licence
Funders
Canadian Institutes of Health Research (452145)

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