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Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy

OBJECTIVES: To evaluate the extent and quality of patient involvement reporting in examples of current practice in health research. DESIGN: Mixed-methods study. We used a targeted search strategy across three cohorts to identify health research publications that reported patient involvement: origina...

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Autores principales: Weschke, Sarah, Franzen, Delwen Louise, Sierawska, Anna Karolina, Bonde, Lea-Sophie, Strech, Daniel, Schorr, Susanne Gabriele
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9872457/
https://www.ncbi.nlm.nih.gov/pubmed/36669835
http://dx.doi.org/10.1136/bmjopen-2022-064170
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author Weschke, Sarah
Franzen, Delwen Louise
Sierawska, Anna Karolina
Bonde, Lea-Sophie
Strech, Daniel
Schorr, Susanne Gabriele
author_facet Weschke, Sarah
Franzen, Delwen Louise
Sierawska, Anna Karolina
Bonde, Lea-Sophie
Strech, Daniel
Schorr, Susanne Gabriele
author_sort Weschke, Sarah
collection PubMed
description OBJECTIVES: To evaluate the extent and quality of patient involvement reporting in examples of current practice in health research. DESIGN: Mixed-methods study. We used a targeted search strategy across three cohorts to identify health research publications that reported patient involvement: original research articles published in 2019 in the British Medical Journal (BMJ), articles listed in the Patient-Centered Outcomes Research Institute (PCORI) database (2019), and articles citing the GRIPP2 (Guidance for Reporting Involvement of Patients and Public) reporting checklist for patient involvement or a critical appraisal guideline for user involvement. Publications were coded according to three coding schemes: ‘phase of involvement’, the GRIPP2-Short Form (GRIPP2-SF) reporting checklist and the critical appraisal guideline. OUTCOME MEASURES: The phase of the study in which patients were actively involved. For the BMJ sample, the proportion of publications that reported patient involvement. The quality of reporting based on the GRIPP2-SF reporting guideline. The quality of patient involvement based on the critical appraisal guideline. Quantitative and qualitative results are reported. RESULTS: We included 86 publications that reported patient involvement. Patients were most frequently involved in study design (90% of publications, n=77), followed by study conduct (71%, n=61) and dissemination (42%, n=36). Reporting of patient involvement was often incomplete, for example, only 40% of publications (n=34) reported the aim of patient involvement. While the methods (57%, n=49) and results (59%, n=51) of involvement were reported more frequently, reporting was often unspecific and the influence of patients’ input remained vague. Therefore, a systematic assessment of the quality and impact of patient involvement according to the critical appraisal guideline was not feasible across samples. CONCLUSIONS: As patient involvement is increasingly seen as an integral part of the research process and requested by funding bodies, it is essential that researchers receive specific guidance on how to report patient involvement activities. Complete reporting builds the foundation for assessing the quality of patient involvement and its impact on research.
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spelling pubmed-98724572023-01-25 Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy Weschke, Sarah Franzen, Delwen Louise Sierawska, Anna Karolina Bonde, Lea-Sophie Strech, Daniel Schorr, Susanne Gabriele BMJ Open Medical Publishing and Peer Review OBJECTIVES: To evaluate the extent and quality of patient involvement reporting in examples of current practice in health research. DESIGN: Mixed-methods study. We used a targeted search strategy across three cohorts to identify health research publications that reported patient involvement: original research articles published in 2019 in the British Medical Journal (BMJ), articles listed in the Patient-Centered Outcomes Research Institute (PCORI) database (2019), and articles citing the GRIPP2 (Guidance for Reporting Involvement of Patients and Public) reporting checklist for patient involvement or a critical appraisal guideline for user involvement. Publications were coded according to three coding schemes: ‘phase of involvement’, the GRIPP2-Short Form (GRIPP2-SF) reporting checklist and the critical appraisal guideline. OUTCOME MEASURES: The phase of the study in which patients were actively involved. For the BMJ sample, the proportion of publications that reported patient involvement. The quality of reporting based on the GRIPP2-SF reporting guideline. The quality of patient involvement based on the critical appraisal guideline. Quantitative and qualitative results are reported. RESULTS: We included 86 publications that reported patient involvement. Patients were most frequently involved in study design (90% of publications, n=77), followed by study conduct (71%, n=61) and dissemination (42%, n=36). Reporting of patient involvement was often incomplete, for example, only 40% of publications (n=34) reported the aim of patient involvement. While the methods (57%, n=49) and results (59%, n=51) of involvement were reported more frequently, reporting was often unspecific and the influence of patients’ input remained vague. Therefore, a systematic assessment of the quality and impact of patient involvement according to the critical appraisal guideline was not feasible across samples. CONCLUSIONS: As patient involvement is increasingly seen as an integral part of the research process and requested by funding bodies, it is essential that researchers receive specific guidance on how to report patient involvement activities. Complete reporting builds the foundation for assessing the quality of patient involvement and its impact on research. BMJ Publishing Group 2023-01-20 /pmc/articles/PMC9872457/ /pubmed/36669835 http://dx.doi.org/10.1136/bmjopen-2022-064170 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Medical Publishing and Peer Review
Weschke, Sarah
Franzen, Delwen Louise
Sierawska, Anna Karolina
Bonde, Lea-Sophie
Strech, Daniel
Schorr, Susanne Gabriele
Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title_full Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title_fullStr Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title_full_unstemmed Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title_short Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
title_sort reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy
topic Medical Publishing and Peer Review
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9872457/
https://www.ncbi.nlm.nih.gov/pubmed/36669835
http://dx.doi.org/10.1136/bmjopen-2022-064170
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