how are patient communities changing the relationship to health information?

E-health refers to a set of information and telecommunications technologies serving health. For almost two decades, many patient communities have emerged and revolutionized the field of health. In what ways do they modify the relationship to information?

Share your illness experience with other patients

It is a revolution in the field of health! For several years, new trading platforms have emerged on the Internet. They allow patients with chronic diseases to share their experiences. Through these exchanges, they learn, advise and support each other, thus disrupting the codes of health information. It is no longer just vertical, that is to say from doctor to patient, but is now done from patient to patient.

Thus, better informed about their pathology, the members of these communities generally have a better understanding of the information of their doctors and can thus participate more actively during their consultations.

The patient is then more involved in the relationship with his disease. He learns to live better with the latter by acquiring real expertise in his illness.

In France, the largest online patient community is called Carenity. It brings together several hundred thousand patients.

Empowerment of the patient: when the patient becomes an actor in his recovery

These virtual communities have given rise to a new phenomenon called patient empowerment. Patient empowerment is a process in which the patient will improve their ability to take better care of themselves, by exploring all the key factors for their recovery and quality of life: medical follow-up, treatments, symptom management. and pain, administrative procedures, work, etc.

The patient becomes an expert in his disease, and can thus participate more, and in a more informed way, in the decisions which concern his disease.

This perpetual search for information is, of course, motivated by a strong desire to live better with the disease, but it also often follows unsatisfactory experiences with a health professional or a treatment that is difficult for them to bear, for example. Patients need to interact with their peers to compare their experiences and better understand their personal situation.

Advancing medical research: when healthcare players and patients move forward hand in hand

Some virtual patient communities work with researchers and the pharmaceutical industry to advance medical research. Thus, many surveys are offered to patients to collect their opinions about their daily life with the disease. Indeed, a better understanding of patients’ needs allows researchers to focus on priority actions in order to relieve and treat them.

Patient feedback helps improve treatment and gives them the opportunity to make their voices heard. These real-life patient data, which is contrasted with data obtained during clinical trials, are increasingly requested by health authorities to verify that the drug meets the needs of patients once on the market. Drug manufacturers can then turn to these online communities to interview patients and gain this valuable data.

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