Fréquence des déclarations relatives à l’implication des patients et du public (PPI) dans des études de recherche publiées dans une revue médicale généraliste : une étude descriptive

Titre original en anglais : Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

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Price, A., Schroter, S., Snow, R., Hicks, M., Harmston, R., Staniszewska, S., Parker, S., & Richards, T. (2018). Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study. BMJ Open, 8(3), e020452. https://doi.org/10.1136/bmjopen-2017-020452

Date de publication: 01/03/2018 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices de la publication identifié·es comme autistes
0 / 8 (0,0 %)
  1. Amy Price
  2. Sara Schroter
  3. Rosamund Snow
  4. Melissa Hicks
  1. Rebecca Harmston
  2. Sophie Staniszewska
  3. Sam Parker
  4. Tessa Richards

Résumé

Objectifs Bien que des plans documentés d’implication des patients et du public (PPI) dans la recherche soient exigés dans de nombreuses demandes de subvention, on sait peu de choses sur la fréquence à laquelle la PPI se produit en pratique. De faibles niveaux de PPI déclarée peuvent masquer une activité réelle en raison d’exigences limitées en matière de déclaration de la PPI. Cette recherche a analysé la fréquence et les types de PPI déclarée en présence et en l’absence d’une exigence de revue visant à inclure cette information. Plan et contexte Une comparaison avant-après de la PPI déclarée dans des articles de recherche publiés dans The BMJ avant et 1 an après l’introduction d’une politique de revue exigeant des auteurs qu’ils déclarent si et comment ils ont impliqué les patients et le public dans leurs articles. Résultats Entre le 1er juin 2013 et le 31 mai 2014, The BMJ a publié 189 articles de recherche et 1 (0,5 %) a déclaré une activité de PPI. Du 1er juin 2015 au 31 mai 2016, après l’introduction de la politique, The BMJ a publié 152 articles de recherche, dont 16 (11 %) ont déclaré une activité de PPI. Les patients ont contribué aux demandes de subvention ainsi qu’à la conception des études, jusqu’à la cosignature des articles et à la participation à la diffusion des études. Les contributeurs patients n’étaient souvent pas pleinement reconnus ; 6 articles sur 17 (35 %) ont reconnu leurs contributions et 2 (12 %) les ont inclus comme coauteurs. Conclusions La déclaration peu fréquente d’activité de PPI ne semble pas être uniquement due à une absence de documentation. La déclaration d’activité de PPI a augmenté après l’introduction de la politique de The BMJ, mais l’activité avant comme après était faible et la qualité des déclarations était inconstante. Les revues, les bailleurs de fonds et les institutions de recherche devraient collaborer pour nous faire passer de la situation actuelle, où la PPI est un supplément facultatif, à une situation où la PPI est pleinement intégrée à la pratique tout au long du processus de recherche.

Objectives While documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information. Design and setting A before and after comparison of PPI reported in research papers published in The BMJ before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers. Results Between 1 June 2013 and 31 May 2014, The BMJ published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, The BMJ published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors. Conclusions Infrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction of The BMJ ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

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