The Value of Openness: The PatientsLikeMe Blog

The media is abuzz at the moment with stories about social networks like Facebook and Twitter, carrying pieces on the good (Facebook Fan Page raises $10,000 for a Silicon Valley Food Bank), the bad (Facebook users are leaving out of mistrust and boredom), and the controversial (Social networking site for living organ donors). In the health domain, there is a fascinating ongoing debate about the interaction of pharmaceutical companies with the internet (John Mack’s Pharma Marketing Blog is the main hub of discussion), as well as the ways in which non-profits should be using innovative new tools. That was the focus of a workshop recently convened by the New England chapter of the Arthritis Foundation at the Equinox Hotel in Manchester, Vermont.

(l-r) PatientsLikeMe R&D Director Paul Wicks with Sue Nesci, Chief Public Health & Policy Officer of NE Arthritis Foundation and Vermont Governor Jim Douglas (keynote speaker)

PatientsLikeMe was invited to share our experiences of using the internet to empower patients, change perceptions in the medical field, and effect real change through shared information.  Here are some of the topics discussed:

We are looking forward to continuing the discussion to help patients benefit from new ways of doing things, while drawing upon the vast experience of those in the non-profit world who have been fighting for patients for many years.

Are you on Facebook? We are! Simply search for “PatientsLikeMe” to find our new company page. Once there, click “Become A Fan,” and a “My Pages” link will be added to your profile. Remember, Facebook is an open platform that anyone can view and isn’t part of PatientsLikeMe. Therefore, any information you share about you is open to the 100 million Facebook members. Thanks for spreading the word about us to your Facebook friends.

Currently, our Facebook page features photos from the AIDS Walk Boston, which drew over 20,000 participants and raised $1.2 million. We were proud to be a sponsor of the Wellness Festival that accompanied the successful June 1st event. Where can you see us next? We’re a sponsor of the National Parkinson’s Foundation’s 6th Annual Young-Onset Parkinson’s Network Conference, August 7th-9th in Atlanta, Georgia. Staffers Paul Wicks, a speaker at the conference, and Maureen Oakes will be present.

Yesterday Naumi Haque of the Wikinomics Blog referenced PatientsLikeMe as part of a bold prophecy regarding viable business models for social networking companies, particularly Facebook.

First, we are honored that Wikinomics found our business model compelling given our decision to forgo an advertising-based revenue stream at this time. While Facebook is a pure-play social network (and defines the space), we are a personalized medicine platform with social networking components. The differences between our companies explain the differences in business approaches.

How? Social status on Facebook (and other social networks) relies on the number of friends one amasses as well as the diversity of activities in which one participates. Status on PatientsLikeMe, however, is conferred to each patient by how much data one shares with the rest of the community. We employ a star-based incentive program for patients to keep their data up to date. A three-star patient shares a diagnosis date, is current with outcome, treatment and symptom information, and has provided a certain amount of historical data. This deep data sharing provides credibility to the patient for all activities on the site (forum posts, private messages, treatment and symptom experience, etc.). Every interaction is dynamically linked back to a patient’s profile through our “patient icon” (see right) that graphically describes the patient’s current status with the disease. In essence, sharing data gives patients our version of “street cred”.

Since data drives the activity on our site, so must it drive our business endeavors. We are decidedly not an eyeballs play and will likely never reach the stratospheric numbers Facebook boasts in total members. So advertising isn’t as compelling an option as a revenue stream. Our goal, however, is to create new knowledge from the shared experiences of our patients. We won’t need 50 million people to participate to achieve that goal. We sell this deep information (anonymized) to companies that are most aligned with the needs of our patients (life sciences companies for treatments and health plans for health management).

It is true, though, that the more members we have, the more insight we’ll be able to derive about the course of disease—and maybe figure out novel ways to change that course. Patients already have many of the answers. We invite people interested in changing the course of their disease to join PatientsLikeMe.