Why do doctors have trouble hearing what patients say?
JP. A: Their training is very long and takes them to such a level that they consider – and rightly so – that no patient is capable of having their skills, of interpreting an MRI of the brain or of performing surgery. . But to reason in this way is to reduce expertise to its only scientific dimension. However, patients live an experience of medical practice that is also social, relational, psychological, etc. That’s all they want to share.
Despite everything, do you have the feeling that the medical profession is opening up to these new interlocutors?
He is forced to do so by strong decisions from the health authorities. To cite a few examples, the United States passed the Disability Act in 1990 for people with disabilities. In France, a law established patient rights in 2011: user representatives have acquired real legitimacy. As for the High Authority of Health, it has decreed that “democracy in health” was one of its priorities for the period 2019 – 2024. The lines are moving.
Is that enough to convince doctors to play along?
Not all follow, especially those who fear having to face opponents. It is true that during the first years of the AIDS epidemic, some patients had become so proficient in their pathology that they vehemently demanded certain treatments or refused others, resulting in violent confrontations with doctors.
Conversely, caregivers who talk to patients today are getting very positive feedback. These exchanges provide them with what they will never find in scientific studies, and which they do not have time to look for themselves: the experience and feelings of the patient.
What information can patients get back?
By living with a chronic disease, they learn to perceive their body and their environment very keenly. Do they feel they are being well cared for? To be heard when they express needs? To have explanations when they ask for them? How do they react to this or that treatment? Which is the easiest to bear?
It is not science, but it is a form of expertise that must be taken into account. In addition, beyond this information, patients claim a place and recognition in the health system and in society; it is a symbolic dimension which is also important.
What are the conditions for a fruitful dialogue between doctors and patients?
Everyone must agree to take a step towards the other, but without going too far. It’s not easy: look at what happened with these AIDS patients who became “super experts” … And at the same time, we saw homosexual doctors who were so close to patients that they ended up by be rejected by their colleagues!
The quality of the dialogue is therefore not taken for granted. This is one of the reasons why certain countries, including France, give a privileged place to patient associations. These define positions, choose spokespersons, train them in collaboration with the medical profession. Thus, the common work is more fruitful.
Would a more active dialogue between patients and doctors have avoided the “crisis of expertise” which marks the Covid-19 pandemic?
Difficult to say, because this crisis of expertise results from a very deep lack of confidence in science and health. On the other hand, I think that today there is an opportunity around the long Covid. It affects millions of patients, some of whom will have permanent disabilities. Doctors are discovering these long forms and we are seeing the birth of several collaborative projects with patients around the identification of symptoms, their evolution, the effectiveness of the therapies offered, etc. We can thus move towards a more inclusive medicine that would generate more confidence.
The interview cycle of the Public Trust in Health chair
The Public Trust in Health chair carries out a series of interviews on various subjects related to the expertise of Grenoble École de Management en santé. Every month, a researcher exchanges with a professional journalist on various themes ranging from confidence in health, through artificial intelligence, serious games, the stress of hospital staff, pharmaceutical recalls to patient expertise. . Find all the articles.
About the Public Trust in Health Chair
The research carried out within the chaire Public Trust in Health aim to better understand new technological solutions, patient-professional relationships and care and innovation ecosystems in the regions. The work of the chair revolves around the following 3 axes:
- Rethinking the place of patients within the health system;
- Explore the issues between trust, technology and health;
- Develop health ecosystems.
–
