Chaire de Recherche Engagements des Patients
User involvement refers to actions taken by patients/caregivers/users to improve the care experience of the greatest possible number of people, within the protean framework of what is also known as healthcare democracy.
A succession of political guidelines have encouraged the development of this type of commitment, particularly in the context of participative undertakings. For example, the Stratégie Nationale de Santé (2019-2022) encourages: "involve users in actions to research and improve the safety and quality of healthcare provision". Furthermore, following on from ma Santé 2022, which recommended "integrating the patient as a player in the training and assessment of healthcare professionals", the July 24, 2019 law on the organization and transformation of the healthcare system specifies that training courses "promote the participation of patients in practical and theoretical training".
The Haute Autorité de Santé has made user involvement one of the pillars of its strategic project. In support of this focus, the recommendation "Supporting and encouraging user involvement in the social, medico-social and healthcare sectors" was published in 2020. It highlights the following points:
- The commitment of the people concerned (patients, supported persons, users) needs to be encouraged and supported by decision-makers and managers in the health, social and medico-social sectors.
- For each project or situation, the aim is to achieve the highest possible level of commitment. However, it is important to adjust to the context and possibilities of both the people concerned and the professionals involved. This approach requires the affirmation of strong principles and the provision of appropriate resources: time, funding and a dedicated support unit.
- Research and evaluation work on commitment need to be developed.
The University Research Chair in Patient and User Involvement is intended in part to respond to this last recommendation. It is headed by Olivia Gross, a senior lecturer in education and training sciences, and a member of the rare disease association movement.
The integration of the Chair within the Éducations et Pratiques de Santé (Education and Health Practices) Laboratory headed by Prof. Rémi Gagnayre means that the research carried out can feed into other work and draw on its frames of reference (public health, education sciences, health sciences). Above all, the creation of this Chair confirms the strong commitment of Sorbonne Paris Nord University and the UFR SMBH to the social responsibility that is historically theirs. It also establishes a field of research that is particularly necessary in the context described above. For, although relatively well-defined and attracting growing interest, patient engagement does not equate to a shared understanding of its foundations and harmonized implementation in the field.
The Chair's research program therefore aims to address the following question: How - and why - to use user engagement for the community to promote health and build just institutions?
This question calls for five lines of research.
- The first concerns the rise of patient involvement. The aim of the Chair is to generate knowledge to consolidate and improve practices.
- Tactics must remain in their place and not obliterate the meaning of action, at the risk of producing an empty signifier. In the field of healthcare, the aim is to identify what makes an institution and its professional practices seem right in the eyes of users.
- Patients have long been subjects of thought, rather than considered as thinking subjects. The challenge now is to support their ability to produce knowledge, and to identify the methods for doing so.
- It is also a question of keeping a critical eye on the methods of engagement and participation that are being put in place. The aim of this section is to identify the conditions required to remain consistent with the original principles of healthcare democracy.
- Finally, the Research Chair intends to contribute to the identification of research methods facilitating the reduction of dissymmetrical relationships between investigators and respondents, with a view to achieving epistemological justice.
In conjunction with the IRIS laboratory (USPN/Paris13), the Chair also hosts training for peer health mediators. Peer mediators are users of psychiatric services who help to support people admitted to the facilities where they are employed (https://www.epsm-lille-metropole.fr/msp).
Winner of 5 national awards on the subject, the Chair is also the support base for the deployment of patient involvement in the UFR's health training courses.