Follow the Data

A data driven blog

Patient social networks

Online social networks for patients would seem to be rife with potential for medical discovery. Given a critical mass of patients who are communicating with each other and with a (morally responsible) service provider, there should be opportunities for e.g. relating disease progression to lifestyle, demographics, etc.,  for discovering unexpected relationships between different diseases, and perhaps for enabling a more precise categorization of diseases. Of course, patients would also be highly motivated to help in the development of new drugs for their particular disease, although it’s not clear how this motivation should best be leveraged.

CureTogether is an interesting effort in this direction. It describes itself using the term Open Source Health Research and aims to enable patients to learn from their peers and to get personalized health information. CureTogether also allows patients (or anyone, really) to participate in and even fund research directed toward a specific disease.

In addition, CureTogether has released a couple of “crowdsourced” books which I think are pretty interesting. Migraine Heroes contains stories and data from 271 migraine patients who describe, in their own words, symptoms, side effects of treatments and so on. The information collected for the book also suggested novel and surprising co-morbid conditions (secondary diseases or disorders in addition to migraine). Endometriosis Heroes is another book in the same vein.

Patients Like Me is another online social network for patients. It was pretty extensively discussed in an Interviews with Innovators podcast, from which I have borrowed a couple of quotes. Basically, Patients Like Me allows patients to share data about their diseases, the drugs they are taking, side effects from treatments and so on. The company makes money by selling this data (in anonymized form) to drug companies, which hopefully leads to a win-win situation where the drug companies get relevant information and the patients get better drugs. The company “puts patients in direct contact with the companies who can help them“, as Jamie Heywood put it in the podcast linked above.

Patients Like Me provides “structured data for illnesses” – a common format for describing different illnesses in a similar way. This is of course crucial for computer readability and efficient statistical analysis. The company sees itself as “training a group of expert consumers to do evidence based decisions” through their service.

An interesting tidbit from the company’s web site:

Future state modeling – Simply “tracking” a patient’s progression has never been the goal for us; we’ve always wanted to take past information and use it to predict the future state of an individual patient. In relatively linear diseases like ALS, that means we can help patients to plan in advance for when they might need a wheelchair or other equipment. It’s often the case that ALS/MND patients don’t get the equipment they need until several months after they could have benefited from having it. Such a tool would give a customized prediction for the individual patient. After all, most of us don’t want to know about the “average” patient, we want to know about a “patient like me”!

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