Raphaëlle Laubie’s Take on Patients 2.0

Health 2.0’s International Director had a chance to interview Raphaëlle Laubie, French entrepreneur and professor at ESCP-Europe. Read on to learn Raphaëlle’s take on the role and history of the Patients 2.0 movement and what it’s future might hold for healthcare as a whole. If you’d like to learn more about Patients 2.0, be sure to register for our free Pre-Conference Patients 2.0 Workshop or Health 2.0 Europe

Health 2.0 – With the health 2.0 revolution we now talk about a ‘patient 2.0’. How did this phenomenon begin?

Raphaëlle Laubie – Health 2.0 is a variation on the term web 2.0, the social web giving everyone the opportunity to communicate, share information and experiences. The first online patients’ community was created in 1993 with BrainTalk, a discussions’ forum devoted to neurological problems. It was followed by PsychCentral in1995, a site dedicated to mental health. The pace picked up rapidly with platforms like OrganizedWisdom, a site that compared to a health Wikipedia. Then came new social networks specialized in a wide variety of diseases and patients’ blogs with daily testimonies contributing to the dissemination of health advice. Through active participation in these online communities, the ‘patient 2.0’ is connected with other patients, better informed, and increasingly engaged in his own health.

H20 – How are online patients’ communities functioning?

RL – Online communities rely on the active participation and exchanges between patients gathered on the same virtual space. Patients 2.0 use the Internet to search for health and medical information but also to share experiences about themselves or their relatives. Beyond the virtual world, the effects can be felt throughout all stages of care beginning with the consultation.

H20 – What do patients get from online communities?

RL – Patients benefit from these online communities in many ways. The anonymity allowing increased self-disclosure and transparency, they help with the frequent feeling of isolation; they provide support and positive thinking through shared recovery stories, they improve decision-making through peers’ recommendations.

H20 – Are there some disadvantages to these online communities?

Certainly. Sharing inaccurate medical information or spreading anxiety through negative patients’ testimonies can be problematic. But for the most part, the benefits of being connected with so many patients with the same disease is a huge help. The web is a 24/7/365 world, where patients don’t have to wait alone in between doctors’ appointments. They have access to daily insights from other patients sharing experiences, symptoms, adverse medication effects and drug interaction problems, treatment stories, dosage strategies, information on new drug trials…

H20 – Are health professionals and the pharma industry channeling the wealth of data produced by these communities?

RL – As patients are using web 2.0 technologies to share their treatments experiences, a wealth of information is produced and available online. This data is an opportunity for health professionals and  stakeholders to listen to patients’ voices and get clinical insights through a different channel than the usual clinical trial results. Platforms like PatientsLikeMe are proving the success of data-driven social networks in reporting patient experiences for the benefit of medical research. However some barriers remain such as guaranteeing a scientific methodology for gathering and analyzing data or simply promoting the awareness of pharma decision-makers. Some patient communities, like CureTogether, also want to remain very independent of the pharmaceutical industry.

H20 – Apart from online communities, what other tools do patients 2.0 use?

RL – Four primary uses can be identified: the search for information, the search for interactions in communities, direct communication (e.g.: via e-mail) and e-commerce (subject to regulations depending on the countries where operated). The quest for information remains the mainstream activity, but there are highly committed patients in communities – especially those with chronic conditions – who are leading the way in sharing their experiences. And the nature of their  conditions drives their needs for information and exchanges online. Studies show that, patients use the internet to get information about diseases or treatments – 80% of US internet adult users according to PewResearchCenter -, 34% read comments from others about medical issues and 18% search for others with similar heath concerns.

H20 – How do you see the future of online health communities and patients 2.0 in Europe?

RL – That would be a bet. Let’s make a wish, instead. I wish that patients and physicians increasingly participate in health 2.0 platforms, promoting a closer relationship and better care. In order for this wish to come true, European systems need to stay tuned with the Health 2.0 movement.

Raphaëlle’s activities include Eugenol: Healthcare Professional Community ;  PagesMed: Healthcare Professionals Directory ; Canal Palatin: Healthcare Video-sharing website ; 10days: Collective Buying Platform for Healthcare Professionals ; Check out her blog or follow her on Twitter

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