[Special Edition] When the patients of the digital age make their voices heard
With one in every two French people stating that they have already looked up or discussed healthcare information online, the internet is gradually taking on a dominant role in the relationship patients have with their health. At the heart of this transformation is the increasing number of patient communities, which are set up and structured using emerging technologies and connected applications. Sharing experiences, finding out about other patients’ stories, using monitoring apps to keep an eye on one’s own health, connecting not only with other patients but also with healthcare professionals, helping to improve treatments by participating in forums, questionnaires, surveys issued by laboratories or researchers etc. These groups are showing great potential and helping to alter the patient’s position within the healthcare system.
A big challenge for the healthcare system is the fact that there are nearly 15 million people in France with chronic conditions.
9 million people with chronic conditions are registered as having long-term illnesses (LTI).
(Source: HCSP Haut Conseil de la Santé Publique, the French high council for public health)
There are 2,663 patients’ associations of various sizes and significance in France.
Since the late 1990s, patient communities have seized upon the opportunities offered by the internet for their online development: discussion forums, social networks etc. Patients or patient associations have regrouped on the internet, with the aim of using new technologies to make their voices heard. Nowadays, patient communities are using a multiplicity of tools to reinvent their look and take on new objectives. They can be driven by patients’ associations, such as Vivre sans thyroïde (Living without thyroid), Renaloo, Cancer contribution, Les impatientes (for women with breast cancer), Rare Connect, or by healthcare professionals, such as the medical discussion forums Atoute, Patients en réseau…
Start-ups and pharmaceutical laboratories also understand that these online platforms are a godsend, as much in terms of audience and profile as in the collection of valuable healthcare data.
Set up in 2001, Carenity prides itself on being the first social network for those affected by chronic illness. ComPaRe was founded by the Assistance Publique des Hôpitaux de Paris (the Paris hospitals authority, or APHP) and its goal is to bring together a community of more than 200,000 patients with chronic conditions: this collaborative scientific project aims to accelerate the progress of research into chronic illness by actively involving these patients.
“Most of these communities are geared towards certain conditions or specific healthcare issues,” says Marc Paris, Communications Manager for the Collectif interassociatif sur la santé (CISS), a French federation of more than 40 patient associations. But we are seeing increasing numbers of purely web-based projects emerging, where the internet itself creates the community, like, for example, the website BePatient. Admittedly, we still have reservations about these platforms: what is their purpose? And most importantly, what do they offer the patient?”
Whether backed by patient associations or operating solely online, as internet pure-players, these communities have the same goals, at least for the time being: they are sources of information about treatments and conditions, forums where patients can share their experiences and stories etc.
According to Emmanuelle Allonneau-Roubertie, Chief Executive of the Fondation Française pour la Recherche sur l’Épilepsie (the French foundation for research into epilepsy), “our mission is to listen to and support patients, and we act as an intermediary between patient associations and neurologists, and other medical specialists. Having a presence on social networks enables us to raise our profile and to reach other types of patients, especially younger ones, and those looking for information about their condition.”
These discussion platforms are also becoming increasingly focused on collecting healthcare data and on actively participating in medical advances. We are therefore seeing an increase in participative and collaborative projects, such as those led by ComPaRe or the American platform Patients like me, a website launched in 2004, which has more than 400,000 patients who upload information regarding their health, in order to create a large database for the purpose of accelerating the development of new treatments.
This data comes from the information patients give when they create an account, the discussions they take part in on the forums or from online questionnaires on specific subjects. The highly sensitive nature of this data raises issues of confidentiality and security: in June 2014, several patients’ associations even asked the following question in a column in Le Monde « Comment avoir l'assurance que ces informations hautement sensibles sont hébergées par des serveurs sécurisés et agréés comme le prévoit la réglementation ? » (“How can we be confident that this highly sensitive information is hosted on secure, accredited servers, as required by the legislation?”).
Increasingly informed and also increasingly proactive in regard to their condition, patient profiles are also changing, and they are gradually becoming “expert patients”, with a collective intelligence which goes so far as to make recommendations to doctors and engage with healthcare stakeholders on behalf of patients.
Over time, this new breed of patient has developed an in-depth understanding of their condition and has learned to live with it every day: as key stakeholders in their own health, they can also act as a resource for other patients affected by the same condition.
“We ask for patient testimony, but we use it with caution: patients do not know better than doctors and conversely, doctors cannot know everything,” Emmanuelle Allonneau-Roubertie explains.
In 2009, the French “Hospitals, Patients, Health and Territories” law fostered the development of these “expert patients”: they are not there to replace nursing staff, but to promote dialogue between medical teams and patients. There are now three universities in France (in Paris, Marseilles and Grenoble) offering courses to those suffering from a chronic illness, so that they can become experts in their conditions. This is one more way of making the voice of the patients heard.