Le partenariat de soin avec le patient : analyses | ![]() |
Ce numéro prolonge, en partie, des communications réalisées lors du colloque du 4 décembre 2023 dans le cadre de l’axe de recherche juridique et éthique sur la place du patient au 21e siècle avec deux premiers articles : l’un issu du groupe de travail réuni par le ministère de la Santé et l'autre émanant du Pôle d'éducation en santé de Bretagne, proposant un mode d’emploi pour les patients impliqués en éducation thérapeutique du patient (ETP). Un troisième article rédigé par des membres du Centre universitaire de médecine générale et santé publique de Lausanne fait le point sur les enquêtes SCAPE permettant de recueillir l’opinion des patientes et patients et de favoriser le partenariat patient-chercheur. Le numéro se clôt sur une étude sur le devenu des patients formés à l’Université des patients d’Aix-Marseille Université.
In a context of increasing patient engagement in the French health system, the patient participation in medical education was encouraged in 2019 through a law. However, in the absence of an implementation framework, the deployment of this participation is encountering various obstacles. The French Ministry of Health has therefore launched a project to define benchmarks and identify levers to encourage its effective implementation. Under the guidance of a steering committee comprising the stakeholders, a review of the literature, several surveys and hearings of various involved players were carried out. This work resulted in 23 recommendations, covering reinforcement of patient engagement, recruitment and accompaniment of patients, employment framework and remuneration, and support structures. To enable these practices to be widely disseminated, we need to continue the work already underway to develop an environment and framework suitable for their deployment.
In its recommendation to "support and encourage the commitment of users in the social, medico-social and health sectors", the Haute Autorité de Santé (French National Authority for Health) states that "provision should be made for compensation or remuneration for those concerned who make a commitment on behalf of others and to the quality of care and support". Planning: ARS Bretagne, which is supporting this commitment by patients through experiments and the allocation of funding, "has commissioned a working group of patient partners and professionals from 2019 to support the partnership between patients, carers and healthcare professionals in TVE and to define the needs. The principle of remunerating patient partners involved in TVE has been established, subject to the condition that there is no impact on their social entitlements (disability pension, benefits, etc.). In order to ensure that their social security entitlements are maintained if they return to work, some patients who are actively involved with social security bodies (CPAM, MDPH, CAF, Pôle emploi, Cap emploi) have received different or even contradictory responses, depending on the people they talk to and the bodies involved, leaving them in a state of uncertainty and reinforcing their feeling of vulnerability, which has led them to give up getting involved. This project is in response to a call for tenders issued in 2022, with a view to making patient involvement administratively […]
Collecting patient opinions is fundamental to personalizing care, promoting shared decision-making, and fostering patient engagement in care. The systematic, large-scale collection of these opinions also enables to evaluate the impact of care on health and the extent to which care is responding to people’s needs. The SCAPE surveys, introduced in Switzerland in 2018, aim to systematically collect and analyze the experiences of cancer patients, providing essential data for improving the quality of oncology care. An important feature of the SACPE surveys is the involvement of patient partners in research right from the start. Throughout the partnership, their experiential knowledge was fully recognized, enriching the quality, relevance, and value of SCAPE. The quality of their engagement will be assessed to appreciate their work and valuable involvement, and to draw lessons to guide future projects aimed at improving the quality of care, in partnership with patients.
This article aims to present the first results of a study regarding the graduates of the DU "Art du Soin en Partenariat avec le Patient" since its creation. It primarily deals with the “Partnership patient” part of the survey and intends to report on how they experiment their assignment, how they cope with the various problems they face in their practice. This work also emphasizes their commitment and motivations which enable them to keep on with their work.