L’impact de la participation du public à la recherche en santé : que mesurons-nous ? Pourquoi le mesurons-nous ? Devons-nous cesser de le mesurer ?

Titre original en anglais : The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

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Russell, J., Fudge, N., & Greenhalgh, T. (2020). The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it? Research Involvement and Engagement, 6(1), 63-63. https://doi.org/10.1186/s40900-020-00239-w

Date de publication: 27/10/2020 Ajout dans AutiHub: 18/07/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
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Auteur·ices de la publication identifié·es comme autistes
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  1. Jill Russell
  2. Nina Fudge
  3. Trisha Greenhalgh

Résumé

Résumé Alors que la participation du public à la conception, à la conduite et à la diffusion de la recherche en santé est devenue une norme attendue et solidement consacrée dans les politiques, l’intérêt pour la mesure de son impact s’est également accru. Malgré une volonté d’évaluer l’impact de la participation du public, et un corpus croissant d’études tentant précisément de le faire, un certain nombre de questions ont été largement ignorées. Ce commentaire aborde ces omissions : quel est l’impact de toute cette attention portée à la mesure de l’impact ? Comment le langage de l’impact façonne-t-il le débat sur, et la pratique de, la participation du public à la recherche en santé ? Et comment l’évolution des conceptualisations de la participation du public à la recherche en santé a-t-elle façonné, et été façonnée par, la manière dont nous concevons et mesurons l’impact ? Nous soutenons que l’attention portée à l’impact risque de déformer la manière dont la participation du public à la recherche en santé est conceptualisée et pratiquée, en nous aveuglant quant à d’éventuels impacts négatifs. Nous appelons à un programme de recherche critique sur la participation du public qui [a] considère la participation du public non comme une intervention instrumentale, mais comme une pratique sociale de dialogue et d’apprentissage entre les chercheurs et le public ; [b] explore la manière dont les rapports de pouvoir se manifestent dans le contexte de la participation du public à la recherche en santé, ce que signifie l’autonomisation et quels intérêts elle sert, et [c] pose des questions sur les préjudices possibles ainsi que sur les bénéfices de la participation du public, et sur le fait de savoir si le langage de l’impact est utile ou non.

Abstract As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored. This commentary addresses these omissions: What is the impact of all this focus on measuring impact? How is the language of impact shaping the debate about, and the practice of, public involvement in health research? And how have shifting conceptualisations of public involvement in health research shaped, and been shaped by, the way we think about and measure impact? We argue that the focus on impact risks distorting how public involvement in health research is conceptualised and practised, blinding us to possible negative impacts. We call for a critical research agenda for public involvement that [a] considers public involvement not as an instrumental intervention but a social practice of dialogue and learning between researchers and the public; [b] explores how power relations play out in the context of public involvement in health research, what empowerment means and whose interests are served by it, and [c] asks questions about possible harms as well as benefits of public involvement, and whether the language of impact is helpful or not.

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