PatientsLikeMe - Curing through Sharing

I was diagnosed idiopathic scoliosis when I was 11 years old. During about 5 years of treatment, there were several decisions that I wonder if done differently, could significantly change how I am now. Starting from the choice of hospital and physician, later comes to the choice of treatment and post-op care. I can’t help but wondering, what if I knew the best choices for me from the beginning, or if I could talk to people who had the same disease as I did, how much better could I be treated?

Something didn’t exist at my time is now helping more people like the younger me – PatientsLikeMe.

PatientsLikeMe (PLM) is an online community built to support information exchange between patients. The site provides customized disease-specific outcome and visualization tools to help patients understand and share information about their condition.

PLM provides a platform for patients to share their symptoms and experiences of fighting with disease, to find out patients who have similar symptoms and to learn more about the treatments of the disease. For instance, if a patient starts to sign up on the PLM website, she might join a specific community (e.g. ALS) with a username and a profile of her symptoms. The information of the profile is available for other users to review and comment. In my case, I can search for scoliosis and join the community to find the most suitable or advanced treatment for this particular disease, or even talk to other patients to exchange some hospital or physician information.

PLM stands against other
social media health platforms due to 
the depth and span of its data
 collected. As stated, there are 
numerous communities on the PLM 
platform. Each community is
patient-oriented. Patient data from 
whom similar conditions generate d
are integrated on the basis of
 community. Thus hospitals, medical 
research institutes and pharmaceutical companies are interested in this company and hope to use the data for treatment improvement, medicine development, or scientific research.

The data collecting and redistribution process combines ICT with personalized care delivery, and creates a virtuous cycle to improve each patient’s condition and the whole health care delivery system. However, PLM is experiencing some problem and is slowing down its development. In the next post, I will dig deeper into the problems and possible solutions.