Rapportage de l'implication des patients : une analyse par methodes mixtes des pratiques actuelles dans les publications de recherche en sante utilisant une strategie de recherche ciblee

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

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Weschke, S., Franzen, D., Sierawska, A., Bonde, L. S., Strech, D., & Schorr, S. G. (2023). Reporting of patient involvement: a mixed-methods analysis of current practice in health research publications using a targeted search strategy. BMJ Open, 13(1), e064170. https://doi.org/10.1136/bmjopen-2022-064170

Date de publication: 01/01/2023 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
6
Auteur·ices de la publication identifié·es comme autistes
0 / 6 (0,0 %)
  1. Sarah Weschke
  2. Delwen Franzen
  3. Anna Sierawska
  1. Lea-Sophie Bonde
  2. Daniel Strech
  3. Susanne Gabriele Schorr

Résumé

Objectifs Evaluer l'etendue et la qualite du rapportage de l'implication des patients dans des exemples de pratiques actuelles en recherche en sante. Plan d'etude Etude par methodes mixtes. Nous avons utilise une strategie de recherche ciblee dans trois cohortes afin d'identifier des publications de recherche en sante rapportant l'implication des patients : des articles de recherche originaux publies en 2019 dans le British Medical Journal (BMJ), des articles repertories dans la base de donnees du Patient-Centered Outcomes Research Institute (PCORI) (2019), et des articles citant la liste de controle de rapportage GRIPP2 (Guidance for Reporting Involvement of Patients and Public) pour l'implication des patients ou une ligne directrice d'evaluation critique pour l'implication des utilisateurs. Les publications ont ete codees selon trois schemes de codage : la « phase d'implication », la liste de controle de rapportage GRIPP2-Short Form (GRIPP2-SF) et la ligne directrice d'evaluation critique. Mesures des resultats La phase de l'etude durant laquelle les patients etaient activement impliques. Pour l'echantillon du BMJ, la proportion de publications ayant rapporte l'implication des patients. La qualite du rapportage fondee sur la ligne directrice de rapportage GRIPP2-SF. La qualite de l'implication des patients fondee sur la ligne directrice d'evaluation critique. Les resultats quantitatifs et qualitatifs sont rapportes. Resultats Nous avons inclus 86 publications ayant rapporte l'implication des patients. Les patients etaient le plus frequemment impliques dans la conception de l'etude (90 % des publications, n=77), suivie par la conduite de l'etude (71 %, n=61) et la diffusion (42 %, n=36). Le rapportage de l'implication des patients etait souvent incomplet ; par exemple, seulement 40 % des publications (n=34) rapportaient l'objectif de l'implication des patients. Bien que les methodes (57 %, n=49) et les resultats (59 %, n=51) de l'implication aient ete rapportes plus frequemment, le rapportage etait souvent non specifique et l'influence des contributions des patients restait vague. Par consequent, une evaluation systematique de la qualite et de l'impact de l'implication des patients selon la ligne directrice d'evaluation critique n'etait pas realisable dans l'ensemble des echantillons. Conclusions Puisque l'implication des patients est de plus en plus consideree comme une partie integrante du processus de recherche et est demandee par les organismes de financement, il est essentiel que les chercheurs recoivent des orientations specifiques sur la maniere de rapporter les activites d'implication des patients. Un rapportage complet constitue la base de l'evaluation de la qualite de l'implication des patients et de son impact sur la recherche.

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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