Associations de malades. Regards de chercheurs.
Résumé
Nowadays, the place of patient associations in the medical world isrecognized and their role in scientific research is increasingly studied,but little is known about the way in which researchers view patientassociations. To understand what they think of these associations andhow they work with them, the Patient Association Think-tank (Gram)launched a survey which received 651 responses from researchers onlineand 17 via interviews.Their experiences are varied. One quarter of them have never encounteredassociations, one third have encountered them during their careerwithout establishing an ongoing relation, and 41 % claim to have connectionsto at least one. Older researchers, those with a higher level ofscientific responsibility and those carrying out clinical or translationalresearch are more often in this position.Their opinions are just as diverse and enable four researcher profilesto be identified.The Committed (18 %), older researchers, three-quarters of whichwork in cooperation with patient associations, do not fear for theirscientific freedom nor a possible waste of time for their research.The Pragmatics (29 %), who have a generally positive view of therole of associations and for the most part have an ongoing relationwith them, question the place of associations in interactions betweenscience and society.The Reticent (27 %) have a rather negative view of associations,considering them in particular to be too critical with regard to researchand likely to threaten their scientific freedom. They therefore cooperatevery little with them.The Reserved (26 %), on average younger, often claim to have "noopinion" on associations. They have little experience of them but donot fear an attack on their scientific freedom.The researchers who do have experience of them describe the additionalincentive, the recognition of their work but also the increasedknowledge of the illness, that these relations provide, emphasizing thatthey require a process of mutual learning. It is therefore firstly throughthe prism of their research activities that the researchers questionedenvision their relations with associations, convinced that only researchthat has been validated and recognized for its quality is of use topatient associations.Their descriptions of the professional and personal benefits resultingfrom relationships with associations, the mechanisms involved in theircommitment and their reluctance respond to the Gram’s aspiration tobase its discussion and action proposals on original and validated data.
Alors que l’engagement d’associations de malades dans la recherche biomédicaleest connu, le point de vue des chercheurs sur les associations et leur vision deces collaborations reste méconnu. Le Groupe de Réflexion avec les Associationsde Malades (Gram) de l’Inserm a voulu combler cette lacune en initiant cetteenquête.Fondé sur les réponses de 651 chercheurs à un questionnaire approfondi et sur17 entretiens en face-à-face, cet ouvrage évoque la diversité d’opinions qu’ilsexpriment et retrace l’expérience des 40% de répondants en relation suivie avecune association. Si un niveau de responsabilité élevé, un âge plus avancé etla pratique d’une recherche translationnelle ou clinique paraissent favoriserleur rapprochement, celui-ci dépend aussi de ce que les chercheurs pensentdes associations. L’enquête met en évidence quatre profils de chercheurs, lesEngagés, les Pragmatiques, les Distants et les Réticents, aux opinions contrastéesquant à leurs craintes éventuelles pour la liberté du chercheur, leurs avis sur lerôle d’interface des associations entre science et société et ce qu’elles apportentau travail de recherche. Leur soutien financier comme les formes concrètesd’action avec les associations de malades sont également décrits.Pour le Gram, cette connaissance des situations vécues à l’Institut visait à fonderson travail de réflexion. L’éclairage porté par leurs pairs sur les relations avec desassociations devrait permettre aux chercheurs de mieux appréhender les enjeuxet retombées de telles collaborations. Ce regard porté sur elles peut aussi éclairerla stratégie des associations en direction du monde de la recherche.