Report from 1st day of Healthcare & Social media Doctors 2.0 congress in Paris

On June 22-23, 2001 hundreds of delegates from medical associations and pharma companies met in the beautiful location of the Cite Universitarie in Paris to discuss the new evolving doctor-patient relationship in Europe, and the strategies available to health care professional to take full advantage of online social media.

The congress, organised by Basil Strategies (an eHealth & eMarketing Social Media consultancy, founded by Denise Silber) in collaboration with the advisory board team composed of health care and social media experts (www.doctors20.com) was the first international congress devoted to the understanding of how physicians and patients use new technologies, web 2.0 tools, and social media to communicate among themselves, to take medical decision, to exchange and deliver knowledge online.

The first workshop was chaired by Jan Geissler, a leukaemia survivor who has participated in clinical trials himself, and focused on the new Dr-Patient relations in Europe, discussing and comparing case studies in different countries.

Jan is one of the most active patient advocates in Europe, having founded the German online patient community LeukaNET (www.leukaemie-online.de) almost ten years ago, at the dawn of social media and patient communities online. Jan also co-founded the European Cancer Patient Coalition, an umbrella association of 315 cancer patient groups, and in 2007 the CML Advocates network (www.cmladvocates.net ), which is now connecting more than fifty leukaemia patient groups from all continents.

While there are unique cultural features that distinguish countries in Europe, one main take-home message emerged from the first day of the congress: the necessity for patients to have ways to distinguish websites reporting proper, accurate and correct information about health, diagnosis, and possible treatments from websites that do not.

As Jan put it, when a person is diagnosed with cancer, time becomes the limiting factor. Decisions regarding the optimal course of treatment need to be taken swiftly, and they better be the right ones.

The newly diagnosed patient finds herself all of a sudden on a sort of "rollercoaster" trip (again borrowing from Jan's powerful metaphor) and the ability to distinguish online information that is relevant and accurate from the majority of the nonsense present on the net is pivotal, or we could say, vital.

For rare cancers, patient online communities represent a tremendously powerful resource, as they bring together the knowledge and experience of hundreds of patients scattered around the globe, and by doing so they create 'surplus knowledge' which often the local doctors, who may have seen not more than a handful of cases of the rare disease in her all life, has not.

Ways to accredit and to distinguish "good" from "bad" websites need to be developed, and strategies to achieve this goal were discussed at length throughout the rest of the afternoon. While some pointed to a model of content and resource moderation similar to what happens already in amazon, e-bay or other similar websites, where users are able to rate the content they are using; others pointed to how clinicians will be incentivized to use a website if the content has been curated by officially recognized experts, or authorities in the field.

The two strategies need not be seen as mutually exclusive, as they appeal differently to doctors and patient communities. While the former may be more attracted by an official "expert" stamp, the latter may value more the feedback received by peer communities.

Indeed, the opinion of "experts" in the field, i.e. recognized authorities who may be able to put their 'stamp of approval' to the website, could function as an anchor and entry point both for fellow clinicians and for those patients who need, especially for their first visit to a new website. a reliable. authoritative introduction to the content offered on that website.

After an initial pact of temporary trust though, patients will be able to judge by themselves the quality of the information. With the help of the peer community they will be able to decide whether to renew the initial trust accorded to the website or not.

Stories and experiences narrated by other patients will also contribute to peer-reviewing, so to say, the content of the website, in a similar way to what we all do when we buy something on amazon on ebay.

After an initial and brief glance at the official accompanying review of the article, we read carefully and often base our decision on the comments and the reviews of previous users and consumers. The LinkedIn model was another example discussed as a possible model of expertise and credibility building. In LinkedIn, "authority scores" emerge consensually from the community of users, and constitute credible sources and trusted anchors for new users.

In the world of e-health, the concept of expertise is constantly being re-located and is shifting from the official top-down appointed expert authority in the field to the un-officially bottom up community-recognized authority because of the experiential knowledge accumulated.

As somebody aptly put it at Doctors 2.0, e-Health should not stand only for electronic health, but should stand for "empowering health", i.e. empowering the patient through social media and the co-production of knowledge online.

Silvia Camporesi

Centre for the Humanities & Health,

King's College London

silvia.camporesi@kcl.ac.uk