Connected Knowledge

Social Networking sites have proven to be a godsend for individuals facing major illness. Sites like DailyStrength enable individuals to join or form support groups around their specific situation. 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, suggestions of treatment options and above all support either through public posts or private messaging. 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), Lou Gehrig’s disease. The idea was that if patients with ALS could share their medical data, including treatments, symptoms and disease history, better treatment plans and options could be identified; a sort of wisdom of crowds for disease. Since its launch in 2004 the website has grown from a single network around ALS to a web of over 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 condition details, symptom history and tracking, treatment details including dosage, efficacy and side effects, along with a host of other 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 her doctor.

This will be a new dynamic in many doctor-patient relationships. Some care providers may be uncomfortable with losing some of their air of omniscience, but others like Dr. Bruce Ferguson of the Hospital for Sick Children in Ontario, Canada have embraced it. “Physicians are going to have to get use to it because it’s not going to stop,” he said. Ultimately, the better informed the patient, the better the care they will receive. According to Ferguson, “nothing has improved practice in our field so much as patient access to good information.”