Du symbolisme à l'autonomisation : faire progresser l'implication des patients et du public dans l'amélioration des soins de santé
Titre original en anglais : From tokenism to empowerment: progressing patient and public involvement in healthcare improvement
Ocloo, J. & Matthews, R. (2016). From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ Quality & Safety, 25(8), 626-632. https://doi.org/10.1136/bmjqs-2015-004839
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Auteurs
Résumé
Contexte Des appels répétés ont été lancés pour mieux impliquer les patients et le public et les placer au centre des soins de santé. De graves défaillances cliniques et de services au Royaume-Uni et à l'international accroissent l'urgence et l'importance de traiter ce problème. Malgré ce contexte politique favorable, les progrès vers une implication accrue sont inégaux et lents et se concentrent souvent aux niveaux les plus faibles d'implication. Méthodes Une recherche documentaire narrative sélective a été guidée par la vaste expertise des auteurs, couvrant un éventail de disciplines dans les domaines de la santé et des soins sociaux, des politiques et de la recherche. Des revues systématiques publiées de la littérature ont été utilisées pour identifier les auteurs et publications pertinents. Des recherches sur Google et des recherches manuelles d'articles de revues, de listes de références et de rapports ont complété l'identification des données probantes récentes. Résultats Les patients et le grand public peuvent être impliqués à la plupart des étapes des soins de santé, et cela peut présenter plusieurs avantages. Une incertitude persiste quant aux raisons et aux modalités d'une implication de qualité et de l'évaluation de son impact, à la manière d'impliquer et de soutenir une diversité de personnes, et selon des modalités leur permettant de travailler en partenariat afin d'influencer véritablement la prise de décision. Cela expose l'implication des patients et du public (PPI) aux critiques d'exclusivité et de symbolisme. Conclusions Les modèles actuels de PPI sont trop étroits, et peu d'organisations mentionnent l'autonomisation ou abordent l'égalité et la diversité dans leurs stratégies d'implication. Ces aspects de l'implication devraient recevoir une attention accrue, de même que l'adoption de modèles et de cadres permettant de partager plus équitablement le pouvoir et la prise de décision avec les patients et le public dans la conception, la planification et la coproduction des soins de santé.
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