Socialized Medicine: How Personal Health Records and Social Networks Are Changing Healthcare

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Microsoft HealthVault was launched in October 2007 with a partner network of 40 healthcare organizations ranging from the American Heart Association, Inc. to Johnson & Johnson Services, Inc. The platform is built around a central, highly secure repository that is designed to scale to accommodate massive amounts of healthcare data and transactions. Users access their HealthVault account through Windows LiveID, though there is also some provision for access through OpenID providers. In addition to health records, users have integrated access to Live Health Search to find information and services on issues related to their health. One of the more unique aspects of HealthVault is its integration with medical and personal devices. In addition to uploading data from your doctor's office visit, HealthVault can manage data provided by your bathroom scale. HealthVault currently integrates with more than 50 Wi-Fi and Bluetooth-enabled devices such as heart-rate monitors, blood-glucose testers, fingertip-pulse oximeters, and yes, bathroom scales.

The notion of "personal metric tracking" has been gaining in popularity ever since Nike launched its Nike+ website in April 2008. Nike+ records fitness data from a sensor in a running shoe and uploads it, via iPod, to a website where you can track your progress. Thanks to the popularity of the Nike site and a well-documented API, other sites have emerged to take advantage of uploaded cardio data. Beyond sharing jogging routes and motivational playlists, users can share their data, forming support communities around their personal fitness levels, goals, and interests.

Healthcare and Social Computing
Social networking sites have proven to be a godsend for individuals facing major illness. Sites such as DailyStrength enable individuals to join or form support groups around their specific situations. Other sites such as OrganizedWisdom focus on connecting consumers with current, accurate health information and services. The key attraction of these health and wellness networks to the individual facing a health crisis is the reassurance that "you are not alone." Members of a particular group or network can share experiences and suggest treatment options, and above all they can share support either through public posts or private messages. What they have not generally offered is access to actual data. That is starting to change.

PatientsLikeMe was created as an attempt to find a cure for amyotrophic lateral sclerosis (ALS), aka Lou Gehrig's disease. The idea was that if patients with ALS could share their medical data, including treatments, symptoms, and disease histories, better treatment plans and options could be identified-a sort of The Wisdom of Crowds for disease. Since its launch in 2004, the website has grown from a single network around ALS to a web of more than 350 communities covering 16 diseases. PatientsLikeMe currently has 37,000 members and is growing by 10% a month. This growth may be surprising given the information users are expected to provide about themselves and their condition. In short, they want to know everything.

Beyond the basic account information common to all social networking services, PatientsLikeMe and similar sites such as MedHelp and CureTogether provide simple data entry forms for entering condition details and treatment details including dosage, efficacy, and side effects, along with information on symptom history and tracking and a host of other bits of biological information. By sharing this level of detailed information, patients can see what has and hasn't worked for others in a similar situation. For example, if your doctor has prescribed 3 mg of Ropinirole without benefit, you can see that several other community members with similar symptoms are receiving 15 mg and are improving. If Ropinirole doesn't seem to be working, you can see that it took a few weeks for others to see improvement or perhaps they switched to Pramipexole. All of this information feeds back into the treatment process and increases the options available to a patient and his or her doctor.

The data may also help find a cure for the disease itself. New treatments and drugs are discovered through exhaustive testing in the form of clinical trials. The chief product of those trials is data-lots of data. Clinicians exhaustively record and analyze the disease history, symptoms, treatment details, and reactions of all participants in the trial; essentially the exact types of information being collected by data-based health social networks. The detailed data provided by health social network users is a potential treasure trove for pharmaceutical and biotech companies. This fact has not been lost on the sites themselves. In fact it is built into the business model. PatientsLikeMe makes no apologies for this as its website makes clear under a link labeled "Read This!":

Our goal is to create partnerships between patients and the companies that are developing products to help them. To do that we will take the information you entrust to us and sell it-in an anonymous, aggregated and individual format-to the companies that can use that data to improve or understand products or the disease market.

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