Quelle est l’importance des communautés de patients en ligne ?

How important are online patient communities?

E-health: how important are online patient communities?

In recent years, online health forums and patient communities have emerged. Within these platforms, patients discuss their experience with the disease. Places for discussion and sharing of experience, these communities represent a privileged space where patients can discuss the subjects that concern them. Support, advice and benevolence, what can patients expect from these forums? Can they trust the information they find there? How do these communities advance scientific research?

What is an online patient community?

Nearly one in three French people discussed these health problems on the Internet in 2018, according to an Odoxa survey for the Healthcare Data Institute.

Indeed, for several years, new platforms for exchanges between patients have been emerging on the Internet. These platforms allow patients affected by a chronic disease to share their experiences and their experiences with it.

Through these platforms, they inform, support and advise each other, thus overturning the codes of information related to health! Information is no longer only vertical, that is to say from doctor to patient, but is probably becoming horizontal, from patient to patient.

Still according to the Odoxa study, the most frequent searches concern the side effects of drugs (for 58% of respondents), the daily feeling with the disease (for 57% of respondents) or even self-diagnosis (for 46%).

What are the benefits for patients of these online communities?

Patients, better informed about their pathology, thus have a better understanding of the information provided by their doctor and can participate more actively during their medical consultations.

They then become “actors in their disease” and are more involved in managing it on a daily basis. The patient will thus learn to take better care of himself, by exploring all the key factors of his recovery and his quality of life (treatments, management of symptoms, medical follow-up, etc.).

In France, the largest online patient community is Carenity . It brings together more than 150,000 members and has forums dedicated to more than 1,200 pathologies ( cancer , fibromyalgia , osteoarthritis , multiple sclerosis , etc.).

What are the limits of online patient communities?

Health forums are multiplying and their quality is very uneven. It can sometimes be difficult for the patient to distinguish between serious discussions and fanciful remarks.

Some forums are nevertheless supervised by health professionals and community leaders, such as Carenity , who work to moderate messages that could be medically dangerous. In addition, some platforms offer many articles approved by health professionals to cross-check information found on forums with more “medicalized” information.

Nevertheless, and even if the patient communities represent a real revolution in the field of health, it is important to make good use of them and not to hesitate to consult your doctor(s) regularly.

To what extent do these patient communities make it possible to advance medical research?

These online patient communities are also a gold mine for researchers and the pharmaceutical industry, which are now working hand in hand.

On Carenity , many surveys are offered to patients in order to collect their opinions on various subjects such as the management of the disease on a daily basis, for example. Results are always collected anonymously and in aggregate.

A better understanding of patients' needs gives researchers the opportunity to focus their actions on them in order to relieve and treat them.

Patients can thus make their voices heard with industry and health authorities. Their feedback contributes to the improvement of treatments and their management.


E-Health: how are patient communities changing the relationship to health information?, Les Echos Solutions 

Talking about your health online: a far from marginal practice that can help research, Odaxa

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