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

Date de publication: 18/03/2016 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais

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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.

Background There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement. Methods A selective narrative literature search was guided by the authors’ broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence. Results Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism. Conclusions Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.

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