A Quick Look at PatientsLikeMe

PatientsLikeMe is a website that permits patients diagnosed with life-changing disease to share medical data and learn more about treatments, drug doses, clinical trials and symptoms of a variety of diseases. The site is establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits so if you are interested in participating in the site, read the privacy policy.

In Practicing Patients (New York Times Magazine, March 23, 2008), Thomas Goetz reviews the site and its implications. Goetz observes:

By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience. ... The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our resume of chronic diseases.

I highly recommend reading Goetz's article.

Personal Note. A friend has atypical trigeninal neuralgia, a very debilitating neuropathic disorder of the trigeminal nerve that causes intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions and is often labeled the "suicide disease" because of the significant numbers of people taking their own lives when they cannot find effective treatments. [MedlinePlus Description | Patient Education Institute' Tutorial]. Oftentimes, I have suggest to her that she should share her experiences by creating a blog. PatientsLikeMe is probably a much better way to share experiences and information with other TN patients. [JH]