By Institut Montaigne
With over 15 million chronically ill patients in France, what role does our healthcare system play for patients? What complementary expertise can chronically ill patients bring to existing care pathways? How can we find within the painful experience of illness both assets and expertise? The following is an interview with Catherine Tourette-Turgis, Professor in Educational Sciences and founder of the University of Patients at Sorbonne-Université.
Can you introduce us to the University of Patients? What are its aims?
The University of Patients was founded in 2010, with the goal of helping chronically ill patients who wish to transform their experience into expertise and thereby help to improve medical care overall. This is an innovative university scheme, the first in the world, which includes patients in paths leading to a diploma, created for them and for the healthcare community.
Today, three university degrees (DU) are recognized, and each is based on existing laws (the HPST [acronym for Hospital, Patients, Health, Territories] law, laws to modernize our health system, Cancer Plan, etc.). This is an important dimension as legislation has legitimized these diplomas and increased their recognition by universities, health centres and NGOs. Today, we have over 150 patients who are following or have followed our degree courses and have obtained university certificates.
Is the patient's role evolving and transforming the healthcare system?
Patients can improve the healthcare system. In care pathways, it is not enough to analyze medical data alone. It is also necessary to examine patients' living conditions, and to consider psychological and social data, etc. Trained patients can make proposals for orientation or reorientation of care pathways according to their own experience, knowledge and acquired skills.
Practically, they can intervene with others patients to help them overcome obstacles during care, to address existential and social issues, and to improve health policies. They can also support the staff when they inform patients of test results, share their own feedback with other patients and help medical teams with case management. In a nutshell, these trained and certified chronically ill patients can help healing our care system.
Today, our healthcare system’s approach is based on the administration and organization of medical work, instead of thoughtfully considering patients as global entities. This creates tension and pain for both caregivers and patients. It is crucial to both re-humanize care together and to reduce the harmful effects of the administrative organization of healthcare. This can be achieved by dedicating more time to listening and to dialogue, and by giving more attention to patients’ experiences.
What are the next steps for you to ensure that chronically ill patients are fully integrated into society?
The first step would be to change the way we look at chronically ill people. We cannot reduce them to dependents on society. We should consider them as individuals who matter and who must be taken into account. The issue at stake is to avoid isolating them and to give them the means to be contributors by recognizing self-care activities and the activities of patients. They are not just beneficiaries but are also the ones producing care, especially for chronic diseases.
The relationship of the chronically ill to social protections and work must also evolve. Patients must be able to continue working intermittently whenever and however they wish to, with adapted temporary or permanent arrangements. There is also an urgent need to integrate them into the workplace and institutions of education, as they have a right to lifelong learning. Indeed, as of today, many of the chronically ill remain excluded. Finally, it could be interesting to reposition our system of social benefits from the perspective of empowered patients who contribute to the healthcare system’s progress. Indeed, this could help to modify the administrative status of chronically ill patients and give them the right to choose their place in society with all the interventions they may need, depending on the contingencies of the evolution of their pathology (crisis, relapses, remission, stabilization and recovery).