Each day there seems to be a new type of patient community popping up.
A good place to start to learn about these new approaches is a “Report on the Use of Social Media to Prevent Behavioral Risk Factors Associated with Chronic Disease” just published by the eHealth Initiative.
The next few blog posts will include interviews from entrepreneurs using new digital tools- including Big Data, open source and social networking-to leverage the power of patients to help bring us all more personalized healthcare.
An interesting question about how to use the Personal Data generated by all these new communities, is described in a new RWJ report “Personal Data for the Public Good- New Opportunities to Enrich Understanding of Individual and Population Health.”
We will start our exploration into patient communities with those working to make the lives of patients with type 1 diabetes a little easier – Tidepool and the T1D Exchange. Then we will explore My Health Teams, Smart Patients, HealClick, and PatientsLikeMe.
Next, we will look at the work of advocacy groups. Examples will include The Rare Genomics Institute, The American Autoimmune Related Diseases Association, The Multiple Myeloma Foundation and the Celiac Disease Foundation.
Do you think that patient communities will be able to create global knowledge sharing networks that can begin to create earlier conservative intervention for those who suffer from autoimmune disease?