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Web 2.0 has enabled millions of patients worldwide to join the conversation with others who may be living with the same disease.  While there has been a mass proliferation of these Patient Social Networks (PaSNs) over the last 18 months, they can be grossly divided into two groups:  1) 3rd Party and 2) Brand Sponsored.

3rd Party PaSNs (no pharma involvement from inception, but have attracted pharma sponsors)

One of the largest and best known is PatientsLikeMe.com.  Promoted as the “leading online community for life-changing conditions”, the site enables patients from around the world to share their experiences with their disease, and to provide structured feedback (data) on how their disease & treatment is progressing.  PatientsLikeMe (PLM) in turn sells this data to pharma/biotech companies to help “accelerate the discovery of new, more effective treatments”.  Recently, UCB was the first pharmaceutical company to partner with PLM to develop their own online epilepsy community to capture real-world information from people living with the disease.  I gather that UCB is trying to capitalize on PLMs existing architecture instead of trying to re-create the wheel – a smart idea.

Inspire’s network of PaSNs.  Inspire has developed a network of 184 different US-based support groups, and it is growing by the week.  Inspire offers free support communities to healthcare organizations and publishers in the US.  They make money by partnering with clinical research organizations to recruit patient for trials.  One notable Inspire group is the Advanced Breast Cancer Community, sponsored by BMS.

Alliance Health is another US mega-network company with multiple support groups.  Diabeticconnect.com is a good example.  They make money by offering direct online marketing opportunities to pharma and consumer companies, tapping into their membership across all of their support groups.

Yes, there is a Canadian example:  the Canadian SkinPatientAlliance.ca.  This non-profit (sponsored by all of the key pharma players in dermatology) offers an open discussion forum for patients to discuss their disease and treatments.

Brand Sponsored PaSNs (Pharma directly responsible for launching and supporting)

Lets start with a notable Canadian PaSN brought to you by Teva Neuroscience Canada.   Teva, the makers of Copaxone® (treatment for MS) is responsible for MSwatch.ca, an online community offering information and other services to patients, caregivers, HCPs and the general public.   Of specific interest, they offer a forum where people can post questions, comments and their personal experiences with any MS therapy.  Teva should be commended for this open & transparent approach.  (No, they are not my client!)

Another MS company (Bayer, makers of Betaseron®) has established an international network of PaSNs via MS-Gateway.com.  Again they have taken a very inclusive approach, allowing their registrants to openly discuss their disease and treatment via online forums.  I had the opportunity to hear from Len Starnes (Head of Digital Marketing & Sales – General Medicine for Bayer Schering Pharma) about this initiative at a recent pharma marketing conference.  Check out his slide presentation here for more information.

Finally, while J & J (makers of Lifescan® glucose monitoring devices) did not launch this site, they formally acquired it in March of 2008.  Childrenwithdiabetes.com is a community site for kids (and parents of kids)with diabetes.  The site has open bulletin boards and also accepts advertising from competitive companies.

There is no doubt that patients have a huge appetite for information direct from other patients about their disease…..especially diseases that are chronic in nature.  The question is – will more and more pharma companies enable those patient to patient “connections” via PaSNs in the future, or will they remain largely on the sidelines?  There are always barriers (the reporting of adverse events mentioned in online forums always comes up as the largest hurdle) but apparently Teva, Bayer and J&J have all decided that the benefits of engaging patients in this manner is worth the extra effort.

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