From the care cycle to the life cycle... The place, role, contribution of the expert patient in care partnership relationship (EN)

From the care cycle to the life cycle...
The place, role, contribution of the expert patient in care
partnership relationship
Nadia Péoc’h, MSc, Ph. D | Director of Care
PREFMS-CHU of Toulouse,
IFCS |Ecole d’IBODE |Ecole d’IADE |DE-IPA

The place of the patient in the strategic management of health institutions 215/10/2019
Care, health, life, a complex triangle1

315/10/2019
The dialogue between medicine,
sociology and anthropology is old
because health is an interdisciplinary
construct.
Let us remember the Hippocratic
Treaty of Antiquity
Air, water, places.
Notes on Nursing
By Florence Nightingale in 1860
An old dialogue…
The place of the patient in the strategic management of health institutions

415/10/2019
From the care cycle to the life
cycle
There are two elements to any treatment :
 The first one is the result of a power that relieves and heals
 The second is the consideration of others, of a concern that
presupposes generosity
Care is defined in relation to the two main fundamentals inherited from Greek
thinking
 To take care of (epimeleia)
 To treat (therapeia)

515/10/2019
Beyond the opposition of two
paradigms …
Mechanistic approach to medicine
The mechanistic explanation of the
human body as a complex machine
(similar to a set of pulleys, ropes, levers).
Centred on organs and disease
The patient is an agent
To cure
Care FOR the patient
Patient the OBJECT of care
Biopsychosocial approach
"The study of the overall person in a situation.”
(Daniel Lagache, speech at the Sorbone, 1949).
Centred on living with disease
The patient is an actor and an author
To care
Care WITH the patient
Patient the SUBJECT of care

615/10/2019
La leçon d’anatomie du docteur
Nicolaes Tulp
Rembrandt (1632)
"I am bound to realize that I have a body, that I am a
face, hands, arms, and all this machine composed of
bones and flesh, as it appears in a corpse, which I
referred to by the name of body”. René Descartes,
Metaphysical Meditations, 1641
The "singularity" of the person and the
"situation", i.e. a unique subject, located in a
particular temporal and societal space.
… a patient who is the object
of care but is a subject of law

715/10/2019
The expert patient, the use of a word
2

815/10/2019
Contextualization: four key ideas
 1980s/1990s : the HIV epidemic in which patients formed networks to take an active part in decisions
affecting them, showing that it is possible for them to intervene in a health system in which they are
users (Class Action). The patient claimed, in addition to being an object of care, to be a subject of law.
 LAW No. 2002-303 of 4 March 2002 on the rights of patients and the quality of the health system,
whose main focus is to state and promote the rights of users and their relatives.
 LAW No. 2009-879 of 21 July 2009 on hospital reform and relating to patients, health, and territories: a
key word, the "patient".
 2014, Claire Compagnon’s Report "For year II of health democracy" introduces the notion of patient
empowerment, by involving patients, their families and representatives more closely in the health
system
 Article 177 of LAW No. 2016-41 of 26 January 2016 on the modernisation of our health system
requires the presence of users’ representatives in the governance bodies of health institutions, the
ARS...
 The National Health Strategy 2018-2022 lists among its goals the innovation to transform our health
system: "by reasserting the place of users".
 Roadmap from the Health Conference (February 11, 2016)
… to recognition
The way

 The epistemological and social construct of the patient concept : borrowed from the Latin patiens "who bears" and the
present participle of patior "to suffer, bear, endure", the term introduces both the suffering of the individual in the
face of the disease and his dependence on the person who cares for him
 The patient's father-physician changes into the user's peer- physician (Pierron, 2007)
 The empowerment of the patient as a personal and identity transformation by the end of which the feeling of safety,
acceptance of one's image, the demands of illness, are integrated into a reconciliation of oneself (Aujoulat, Luminet,
and Deccache, 2007)
 The "learned" doctor, the "knowledgeable" patient (Noël-Hureaux, 2010)
 The recognition of patients’ "work" (Tourette-Turgis and Thievenaz, 2013)
 The "Montreal model" with a partnership that can be made at the level of care, service organization, and the health
system and governance (Pomey, Flora, Karazivan, & al., 2015)
 The patients’ experiential knowledge (Jodelet, 2017)
915/10/2019
Back to the state of the art

1015/10/2019
A multiplicity of roles
Expert-patient, partner-patient, co-operator-patient-, peer-patient,
resource-patient, carer-patient, knowledgeable-patient, trainer-
patient, researcher-patient, so many expressions that acknowledge
and enhance patients' experience.
 caregiver/patient with the experience of living with
illness/disability
 Motivated patient who speaks for the user
 Knowledgeable patient who makes use of his "experiential"
know-how
 Patient inclined to speak up : with the transmission of a clear
message
 Patient aware of ethical and deontological issues (confidentiality)
 Patient with relational qualities of listening and caring
© Sources : Serrano, E. (2019)
Focus Groupe June 2019 / Sample = 150 persons
© Péoc’h, 2019

1115/10/2019
Overview of the patient’s various roles in
the light of the Toulouse experience
3

1215/10/2019
The patient partnership, a
variation…
 A focus of the 2018 - 2020 project of the Toulouse University Hospital
 Project Group associating the University Hospital and the Faculties
General Management
Care Branch
Quality Department (Pr. Virginie Gardette)
Vice-dean (Prof. Odile Beyne-Rauzy)
Health professionals
 The participation within the ARS Occitanie in the Regional Committee for the Impulsion and Analysis
of Health Partnerships (CRIAPS)

1315/10/2019
… in health training
The Toulouse university hospital staff and training health executives develop the participation of
patients in the initial training of health professions (medicine, maieutics, IFSI, IFCS, IFE, etc.).
There are several means of integration of caregiver/trainer- patients into health training:
 Participation in pedagogical engineering
 Participation in student tutoring
 Intervention in teaching, including
o Testimonies about the experience of disease, ...
o Participation in formal, supervised or simulation teaching
o Participation in student assessments (Objective and Structured Clinical Examinations, OSCE; IFCS Public Health
Module)

1415/10/2019 The place of the patient in the strategic management of health institutions

1515/10/2019
… in research
 Patient-centred research consists in conducting research with the patient in co-construction
(acknowledgement, inter-complementarity, interdependence)
 This interprofessional approach ensures that research results correspond to patients’ needs (professionals
and researchers with expertise of the disease versus patients with expertise of living with the disease =
vivrology)
 Collaborative approach that promotes the emergence of a common understanding basis between patients,
family members, caregivers, managers and researchers (Clinical research; applied research; intervention
research; action research)
 The patient or their family can be involved throughout the research process, in the designing of the
research, to define its priorities, goals, co-construct the interventions to improve care, define assessment
criteria, but also during the phases of result communication and knowledge application.

1615/10/2019
The main points
New challenges for the next 10 years will structure
the health field
 An assertive health democracy: citizen-patients becoming co-partner health actors
within socio-technical networks, in teams through coordinated structures
 The creation of a Territorial Resource Platform : with the sharing of a partnership
culture at the service of patients, a managerial challenge for the future
 The creation of a University Certificate : training in the partnership relationship in care,
teaching, and research with all the participants (academics, health professionals, users’
representatives, partner-patients, volunteers from associations, etc.)

1715/10/2019
“Anything that is done for me,
without me,
is done against me”

1815/10/2019
Aujoulat, I., Luminet, O., et Deccache, A. (2007). The perspective of patients on their experience of powerlessness. Qualitative health research, 17(6), 772–785
Goulet, M., Larue, C. & Chouinard, C. (2015). Partage du savoir expérientiel : regard sur la contribution des patients partenaires d’enseignement en sciences infirmières. Santé mentale au Québec,
40(1), 53–66.
Jodelet, D. (2017). « Le savoir expérientiel des patients, son statut épistémologique et social ». In ouvrage sous la direction de Antonia Oliveira Silva et Brigido Vizeu Camargo, REPRE-SENTAÇÕES
SOCIAIS DO ENVELHECIMENTO E DA SAÚDE, chapitre 11, pp. 270-294. Universidade Federal do Rio Grande do Norte, 460 pp.
Flora, L. (2016), « Le savoir des malades à travers un référentiel de compétences « patients » utilisé en éducation médicale », La recherche en éducation, N°15 (20116), pp. 59-75.
Flora L., Karazivan P., Dumez V. Pomey M.-P. (2016). « La vision « patient partenaire » et ses implications : le modèle de Montréal. ». La revue du praticien, Tome 66, N° 4, pp. 371-375.
Hervé, C., Stanton-Jean, M., et Mamzer, M.-F. (2017). La participation des patients. Paris : Dalloz
Noël-Hureaux, E. (2010). Médecin" savant", malade" sachant. Actes du congrès de l’Actualité de la recherche en éducation et en formation (AREF), 1-7.
Pierron, J.-P. (2007). Une nouvelle figure du patient ? Les transformations contemporaines de la relation de soins. Sciences sociales et santé, 25(2), 43–66.
Pomey, M., Flora, L., Karazivan, P., Dumez, V., Lebel, P., Vanier, M .. & Jouet, E. (2015). Le « Montreal model » : enjeux du partenariat relationnel entre patients et professionnels de la santé. Santé
Publique, s1(HS), 41-50.
Serrano, E. (2019). « Patient/aidant formateur dans la formation en santé ». Colloque Rentrée des patients. Salle Laroque, Ministère de la Santé et des Solidarités, Paris : 5 septembre 2019.
Thievenaz, J., Tourette-Turgis, C., Khaldi, C. (2013). Analyse le « travail » du malade. Education Permanente, n° 195, 47-58.
Tourette-Turgis, C, Thievenaz, J. (2013). La reconnaissance du « travail » des malades : un enjeu pour le champ de l’éducation et de la formation. Les Sciences de l’éducation - Pour l’Ère nouvelle, n°
46, 59-75.
Tourette-Turgis, C. (2015). L’éducation thérapeutique du patient : la maladie comme occasion d’apprentissage. Louvain La Neuve : De Boeck Supérieur.
Bibliographical References

From the care cycle to the life cycle... The place, role, contribution of the expert patient in care partnership relationship (EN)

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