Argument
Since the beginning of the 21st century, the "expert patient" revolution has been underway. The relationship between doctor and patient, as well as the posture of each, is also changing. The patient, more informed, is becoming an actor in his or her own health. At the international level, many texts emphasise the importance of the role and participation of users, individually and collectively, at all levels of the organisation of care. This societal movement was notably signalled in 2013 by an Evidence Based Medicine journal, the British Medical Journal, which called for "the scientific community and practitioners to let the patient revolution begin" (Richards et al, 2013) [1]. Some even saw it as the blockbuster of the century (Dentzer, 2013) [2].
As a social actor, the role of the patient could become paramount as the healthcare systems of Western countries inexorably collapse. The recently deceased sociologist Daniel Defert [3], founding president of the HIV/AIDS association AIDES, was one of the champions of this new role of the patient in the last quarter of the 20th century, thought of as a social reformer.
In France, the law of 4 March 2022, known as the Kouchner law, by instituting health democracy, aimed to place the patient at the heart of the medical relationship and to establish a more egalitarian relationship in which the patient would be recognised as a true citizen.
To this end, the 2002 legislator advocated not only the need for greater transparency in the doctor-patient relationship, but also the recognition of rights for the patient (Lunel, 2021 [4]; Rubinstein, 2021 [5]). Three French researchers have clearly identified it as a social fact (Flora, 2012 [6]; Jouet, 2013 [7], 2014 [8]; Flora et al, 2014 [9]) according to the definition of Emile Durkheïm (1894) [10], father of sociology.
Since the beginning of 2023, various recent legislative actions, or those under consideration, have been carried out to provide a legal framework for the general interest activities of patients who are still variously qualified (patient trainers or teachers, expert patients, peer helpers or peer health mediators or public health mediators, patients intervening in ETP (Therapeutic Patient Education), patient partners...).
Thus, in 2023, a COPIL (steering committee) was set up by the Ministries of Health and Prevention on the one hand, and Higher Education, Research and Innovation on the other, to propose the implementation of Article 3 of the law of 19 July relating to the transformation of the health system: "The medical universities must [encourage] the participation of patients in both practical and theoretical courses". An inter-university consortium, together with an association, France Patients Experts Addiction, has also been set up in 2022 to build a certification of Validation of Acquired Experience (VAE).
Discussions are also currently underway with the Ministries of Health and Prevention and of Labour, Full Employment and Integration under the responsibility of the Minister for Training and REVA (the VAE reform) [11]. The association, France Patients Expert, which is itself associated with the Assistance Publique, Hôpitaux de Paris (AP-HP), is also working on this process of filing certification with France Compétences (Déjour, 2021) [12].
Created by Law No. 2018-771 of 5 September 2018 (art. 36) for the freedom to choose one's professional future, France compétences is the only national governance body for vocational training and apprenticeship. It is a national public establishment of an administrative nature.
It is within the framework of these ministerial actions on the issue of patients and people with disabilities, which have been prompted by strong social demand, that the Centre de Recherche Juridique de Paris 8 (CRJP8) and the Centre d'Innovation du Partenariat avec les Patients et le Public (CI3P) of the Université Côte d'Azur's Faculty of Medicine, have initiated a legal and ethical reflection since 2020 with the organisation and publication of two scientific events (in 2020, "the place of patients in the 21st century in the era of partnership"[13] (Flora et al, 2021)[14], ; in 2022, "the place of the patient in the digital health environment" [15].
We are now launching a call for papers with a view to organising a third conference in November 2023 on recognition through VAE and the professionalisation of patients.
The call for papers
This call for papers for this 3rd legal and ethical research conference on the place of patients in the 21st century is therefore focused on
research work, including contradictory research,
the mechanisms put in place for patients mobilised in the general interest, shedding light on their socio-professional status in all the forms developed and in their diversity.
The research work and mechanisms for implementing legislative and regulatory changes aimed at allowing patients with certain statuses to be remunerated for their expertise without losing their social status
(AAH, disability, unemployment...) or overtaxation when they serve the general interest.
Experiences of implementation or ongoing implementation that shed light on the difficulties or obstacles of socio-professional organisations
Research and implementation of mechanisms for mobilising patient partners or others, combining voluntary work and professionalisation.
Terms of submission
Submissions must include an abstract of 300 to 350 words, the name of the author(s) with the e-mail address of the main author, the affiliation if applicable, the title of the paper, five key words, and the bibliography if applicable. Selected papers may be extended by an article in a special issue or a collective work (the first conference resulted in publication in the journal Le partenariat de soin avec le patient: analyses n°2. The second conference will be published in the journal of health law and health insurance n°26).
This conference will take place at the Université Côte d'Azur during the last week of November 2023 in hybrid mode (on site and by videoconference) at a date yet to be determined. While waiting for the opening of a website on the CNRS Sciencesconf digital platform, you can send your submissions by clicking on this link.
Notes and bibliographical references
[1] Richards, T., V. M. Montori, F. Godlee, P. Lapsley and D. Paul (2013). Let the patient revolution begin. BMJ. 346: f2614-f2614.
[2] Dentzer, S. (2013). Rx For The 'Blockbuster Drug' Of Patient Engagement. Health Affairs. No. 32, p. 202.
[3] Defert, D. (1989). Fifth International AIDS Conference, Montreal.
[4] Lunel A.. (2021). From patient trainer to peer health mediator: history of a training rooted in the city. The journal on the partnership of care with the patient: Analyses, N°2, the Centre for Innovation of Partnership with Patients and the Public (CI3P), Université Côte d'Azur, pp.8-23
[5] Rubinstein, S. (2021 Être médiateur de santé pair, pair aidant en France, les paradoxes de la professionnalisation des patients. The journal on the partnership of care with the patient: Analyses, N°2, the Centre for Innovation in Partnership with Patients and the Public (CI3P), Université Côte d'Azur, pp.80-92
[6] Flora L.. (2012). The patient trainer: theoretical and practical development of a new health profession. PhD thesis in social sciences, speciality "Sciences de l'éducation". Université Vincennes Saint Denis - Paris 8, campus Condorcet, 2012, p. 355.
[7] Jouet E. (2013). Making learning out of one's illness: the example of the EMILIA project. Education permanente, N° 195, pp.74-84.
[8] Jouet E. (2014). La reconnaissance des savoirs des malades : de l'émergence au fait social. In Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé. Archives contemporaines, Paris, pp. 9-21.
[9] Flora L., Jouet E., Las Vergnas O. (2014) "Contribution à la cartographie des publications établissant le fait social de la reconnaissance des savoirs des malades", in Nouvelles interventions réflexives dans la recherche en santé : du savoir expérientiel des malades aux interventions des professionnels de santé. Archives contemporaines, Paris, pp. 235-236.
[10] Durkheim, E. (1988) The Rules of Sociological Method. [1st edition 1894]). Flammarion, Paris.
[11] Tourette-Turgis C. Flora L. Merle R. (2022). "Presentation of the inter-university consortium involved in the VAE of patients, in "Les 20 ans de la démocratie en santé : les modes d'intervention des patient-es dans le système de santé" organised by the Université des patients de Sorbonne université. See the videoconference presenting the REVAH and the Interuniversity consortium by clicking here
[12] Dejour A. (2021). "A certification Patient-Expert Addictions at the crossroads of the experiential knowledge of the patient recovered from his addictive behaviours and the activities of the care actors". Psychotropes 2021/1-2 (Vol. 27), pp. 77-94.
[13] 1st inter-university colloquium between the University of Paris 8 and the University of Côte d'Azur on the place of the patient in the 21st century, in the era of partnership.
[14] Flora L. Darmon D., Benattar J.-M. (Dir.) (2021). The patient care partnership review: Analyses, N°2, the Centre for Innovation of Partnership with Patients and the Public (CI3P), Université Côte d'Azur.
[15] 2nd colloquium on the place of the patient in the digital health environment, Maison de la Recherche, Université Paris 8
