Medicine By Patients For Patients On The Web

Patients diagnosed with life-changing conditions often find it very hard to share details of their diagnosis and treatment, including information about specific symptoms, medications, and providers with other patients with the same condition. A website that functions like a social networking virtual support group allows patients to do just that, from the comfort of their homes.

PatientsLikeMe has about 50,000 patients interacting and discussing their symptoms, treatment regimens and disease progressions. The site has a “community” for each of the following prevalent diseases:

• ALS (Amyotrophic Lateral Sclerosis)
• epilepsy
• fibromyalgia
• Chronic Fatigue Syndrome
• HIV/AIDS
• mood conditions
• anxiety
• bipolar disorder
• depression
• OCD (Obsessive-Compulsive Disorder)
• PTSD (Post-Traumatic Stress Disorder)
• MS (Multiple Sclerosis)
• Parkinson’s Disease
• CBD (Corticobasal Degeneration)
• Devic’s Neuromyelitis Optica
• MSA (Multiple System Atrophy)
• PLS (Primary Lateral Sclerosis)
• PMA (Progressive Muscular Atrophy)
• PSP (Progressive Supranuclear Palsy)

The site is “committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.” It is free for patients, but it sells the anonymized and blinded data that patients share on the site to doctors, pharmaceutical and medical device companies, research organizations, and non-profits. It assures patients that their information is only shared to “trusted partners” and that it “is kept safe and secure.”

For example, the site conducted a research study in 2008 to evaluate the effectiveness of lithium in treating ALS. Using data from the collective experience of its members that have taken the drug, it determined that lithium didn’t work. That same conclusion was reached six months later through conventional clinical trials conducted by researchers.

This site is part of a larger movement dubbed “Patient 2.0” that is highlighted in the current issue of Time Magazine. In this empowerment movement, “laypeople are banding together and starting websites to help figure out which practitioners to see and which hospitals to avoid, which clinical trials show promise and which experimental treatments are bunk.”

Since conventional trials for new treatment and medications take so long, “patients have been rushing to come up with their own ways of achieving what the health care industry calls rapid learning.” However, many doctors caution that people should not believe everything they read on the Web, and that traditional scientific research remains the best way to make conclusions about what works and what doesn’t work.

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About Amer Kaissi

I teach courses and do research in healthcare management Amer Kaissi's profile Amer Kaissi's blog