The patient can now exchange on internet forums with other patients affected by the same disease. He can measure himself blood sugar or temperature and transmit his analysis to health professionals. He can do exercises on his phone or computer in the form of serious games (serious games) to better heal, control his diet and lifestyle.

Distance exchanges between patients and health services allow the former to express requests previously poorly treated by the latter, for example to obtain information to better understand their treatment. And the better consideration of these requests generates trust in the system, which is crucial for effective treatment.

In parallel, these exchanges make possible more personalized and therefore more efficient therapeutic responses, thanks to real-time data analysis, a better relational approach and an increase in feedback and interactions. Everything would be all right, in the best of all worlds, with the advent of digital technology in health? A closer analysis shows that its benefits for the patient are not obvious.

The emergence of health democracy

Empowering the patient, reducing the asymmetry of knowledge and power between patients and physicians, was the goal of a movement that appeared in the 1990s and known as “health democracy” – some also refer to ” democracy in health “. One of the leaders of this movement, Christian Saout, former president of Aides, an association fighting against AIDS, presented the project: “Knowledge is power. That’s what we want: to have knowledge, to have knowledge to be able to lead a sick life, a patient’s life, the best we can hear. “

Health democracy has addressed the issue of rebalancing the relationship between patients and physicians primarily from the perspective of rights. A chart of the hospitalized patient was defined, the right of access to his health record was guaranteed, as well as the principle of informed consent. Then the patients acquired the right to weigh on the orientations of the health system.

For its part, the associative movement, particularly around AIDS and myopathies, has played an increasingly important role in research policies, forms of treatment and some medical decisions, in clinical situations circumscribed to certain diseases. . Through political-legal, health democracy has thus made it possible to affirm both rights, an improvement in the quality of service, representation in health authorities and finally a more balanced relationship with health professionals in some areas. clinical situations. But, despite these advances, many expectations have still not been taken into account.

Emancipation in the management of health care?

The recent establishment of the Institute for Health Democracy (IPDS) by the public authorities was an opportunity to mention it. Several demands emerge: the demand for improved quality of service through a better coordination of health care paths, the pursuit of transparency efforts.

But it is especially the sharing of skills in the management of the disease, what is called the health journey, which appears as a major topic. The use of the term “coconstruction”, often used in recent years, embodies this desire to continue the effort to reduce information asymmetry between professionals and the patient. The expectation expressed is strong and multiple: to introduce a more collaborative relationship, to affirm a greater autonomy of the patient in decision-making and to guarantee his emancipation in the management of health care courses.

It is in this context that digital has burst. Marisol Touraine , then Minister of Health, presented the new technologies as a factor of progress in her speech to launch the IPDS: “At the individual level, e-health is a factor of empowerment that allows to give weapons to access freedom and autonomy, while at the collective level digital is a factor of networking, transparency, and emancipation. But are things so simple?

Four possible situations …

In fact, digital health can lead to four contrasting situations.

  • The status quo. Some patients are refractory to digital tools. The relationship with health professionals is not really affected. We must be sure that this type of patient does not remain “forgotten” by the system if it had to switch to digital.
  • Autonomy. The patient builds his own expertise via digital operators such as Googleor Facebook , which give him access to sites, articles, patient communities, especially when the health care system fails to provide answers. The relationship with health professionals is distending.
  • Remote monitoring. The demands of the patient are better covered, his follow-up by professionals is strengthened, the patient does not seek to make his own expertise on the Internet.
  • The development of an expertise. The patient co-constructs his career with professionals and creates real expertise via digital operators, but keeps in touch with health professionals.

… and real risks

Situations 1 and 2 (“status quo” and “autonomy”, previously, Ed) present real dangers. In the first case, the patient may find himself at the margins of a health system that has evolved to digital, so to be poorly supported. In the second case, the commitment of the patient results in an autonomous management of the disease, characterized by a reduced contact with the system and professionals, with the risk of relying on erroneous information or triggering resistances of the patient. on the part of health professionals. The last two situations allow the construction of a more optimal course of care.

The challenge of a health democracy in the context of digital health is clearly around this question: to what kind of situation will the system evolve? Indeed, digital health presents a major risk: instead of regaining power in the management of its health problems, the patient can move from asymmetric knowledge and traditional power vis-à-vis the health system to an asymmetry of knowledge and power vis-à-vis digital operators, Google and others.

While digital health seems to allow a fuller realization of health democracy by giving the patient much more knowledge than it had so far, so much more power in the medical world, it is likely to create a new dependence between the patient and the digital operators who have his personal data. For example, websites have created in Franceand elsewhere, communities of patients affected by the same disease. These sites constitute databases based on information provided by their members on adverse effects observed with their treatments, which are then resold to pharmaceutical companies. A new problem of democracy is likely to emerge

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