title: [Involvement of researchers with patient associations: what is the role of their opinions, their clinical activity and their nature?].
abstract: Although the involvement of patient associations in biomedical research is well known, conversely, researchers' views and perceptions of these associations have remained unknown. For this reason, Inserm's Patients' Association Liaison Group (GRAM) launched the CAIRNET survey in 2012, based on questionnaires and interviews conducted with researchers working at Inserm. The variety of their opinions made it possible to distinguish four profiles, the committed, the pragmatic, the reticent and the distant. Thus 41 % of respondents reported ongoing relationships with at least one association, 72 % for the committed and 16 % for the distant. Although these relationships are formed more easily among researchers involved in clinical activity, they also encourage collaborations between clinicians and basic researchers. The apparently lower degree of involvement of female researchers proved to be associated with a lower level of clinical activity, limited permanent recruitment, and a lower hierarchical status.
authors.affiliation: CERMES3, centre de recherche médecine, sciences, santé, santé mentale, société ; CNRS UMR 8211, 7, rue Guy Môquet, 94801 Villejuif Cedex, France.
authors.forename: Lise
authors.initials: L
authors.lastname: Demagny
authors.affiliation: CERMES3, centre de recherche médecine, sciences, santé, santé mentale, société ; CNRS UMR 8211, 7, rue Guy Môquet, 94801 Villejuif Cedex, France.
authors.forename: Martine
authors.initials: M
authors.lastname: Bungener
authors.affiliation: Département de l'information scientifique et de la communication, Inserm, 101, rue de Tolbiac, 75654 Paris Cedex 13, France.
authors.forename: François
authors.initials: F
authors.lastname: Faurisson
mesh_terms: D000328:Adult; D001290:Attitude; D035843:Biomedical Research / Q000458:organization & administration; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010344:Patient Advocacy / Q000706:statistics & numerical data; D024382:Professional Role / Q000523:psychology; D011369:Professional-Patient Relations; D012108:Research Personnel / Q000458:organization & administration* / Q000706:statistics & numerical data; D012657:Self-Help Groups / Q000458:organization & administration* / Q000592:standards / Q000706:statistics & numerical data; D000078329:Workforce