Round tables > Synthesis n°1

Information practices and care prospects

Viviane Clavier is a professor of communication studies at GRESEC, the Research Group on Communication Issues (Grenoble Alpes University). She presented her field of research: the study of informational practices in health. If there are many sources of information from a multitude of different actors (health professionals, institutions, private organizations...), this does not guarantee that patients manage to appropriate them. Among all the available sources of information, social media have the advantage of offering information that is easily accessible, because it is socialized: it is not only "expert" information validated by health professionals, but a "joyful cacophony" mixing experience sharing and interpersonal exchanges between patients. These informational practices allow patients to develop medical knowledge, evidenced by the use of a specialized medical lexicon. However, access to reliable information is more difficult in cases where the area of knowledge is highly publicized (e.g., nutrition). A doctor's supervision is therefore necessary to clarify, invalidate or reframe the knowledge acquired.

Pascal Turpin is a resource patient of Résic38 (the Isère Heart Failure Network). After being diagnosed with heart failure following a heart attack in 2016, he was able to follow three weeks of cardiac rehabilitation at the Hôpital Sud de Grenoble, combining physical rehabilitation exercises and group training. He then joined Résic38, and regularly participates in the animation of therapeutic patient education workshops (TPE). He testifies to the need for chronically ill patients to be informed in order to learn to live better with their disease. He also confirms the importance of peer-to-peer exchange: for patients, it is not enough to hear the information "reduce your salt intake" or "take diuretics"; they must learn to apply this advice in their daily lives, by understanding what they can cook, or when to take medication so as not to be disturbed. He believes that the acceptability of a monitoring implant should not be a problem for patients if it is to anticipate cardiac decompensation. On the contrary, the implant would reduce the time spent on self-monitoring: "It's a job to be chronically ill". The risk is that patients will take advantage of the fact that they are better monitored to delegate the management of their disease entirely to their doctors. He thinks that two mandatory TPE sessions should be set up to allow patients to know a minimum of the warning signs of heart failure, and what they can do to avoid decompensation.
Miézan Niamké Adjouba Brigitte Aka is a doctor in communication studies (GRESEC, UGA). She presented her doctoral research on the informational practices of patients with chronic diseases in Ivory Coast. She noted the failure of prevention campaigns, which do not take into account national specificities. Indeed, patients trust traditional medicine more than conventional (Western) medicine, value aesthetic standards that promote overweight, and do not always have access to the written word due to low school enrollment. Thus, prevention messages are incomprehensible to most of the population. In addition, the distribution channels are not adapted to the information habits of patients, who rely mainly on word of mouth. There are forms of resistance to the institutional discourse: denial of the existence of chronic diseases, suspicious attitudes towards prevention messages, rejection of prevention messages or even conventional medicine, and exclusive promotion of traditional medicine to the detriment of conventional medicine.

Participants then discussed the existence of non-information practices, both on the part of patients and physicians. Miézan Niamké Adjouba Brigitte Aka indicated that doctors in Ivory Coast prefer not to discuss traditional medicine with their patients because they feel that this would give a form of legitimacy to these practices. Similarly, Viviane Clavier was surprised that one-third of the 140 dieticians she interviewed in one of her studies felt that medical information is useless because patients do not follow their advice anyway. Some patients refuse to get information, especially when there is no medical consensus (as in the case of diet for example). She nevertheless notes that medical speech is very important for patients: "We always say that social media are spaces outside of medical practice, in reality we found that it was quite the opposite: Internet users talk a lot about the relationships they have with their practitioners, whether to criticize them, or on the contrary to say how happy they are".

For his part, Pascal Turpin is optimistic about the willingness of doctors to inform their patients, especially among the younger generation. He himself participates in a 40-hour training module for students at the university hospital. On the other hand, he notes the low participation of patients in the Résic38 workshops: rarely more than two or three per session, even though hundreds of patients with heart failure are diagnosed each year at Grenoble University Hospital. It seems that a majority of patients prefer to forget their illness as soon as they leave the hospital, and only listen to what suits them. He invites us to think about how and when to present information so that the patient is receptive to it. His testimony is confirmed by Steven Macari, also a trainer in TPE: diagnosed with heart failure at the age of 50, he was quickly identified by his doctors as a potential patient actor, eager to learn about his disease. The challenge is to adapt the medical injunctions to his daily life. Both mentioned the great fatigue caused by beta-blockers (drugs that slow down cardiac activity): there is a compromise to be found between the longevity promised by doctors and the quality of life sought by each patient.

Finally, Philippe Cinquin emphasized that therapeutic patient education for chronically ill patients has been present in medical training for a long time. However, it has little place in daily hospital practice, because there is no dedicated ISA point (index for measuring hospital activity). Thus, "the physician who spends a quarter or half hour explaining to a patient is wasting money for his hospital."
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