Patient Communities Come in Many Flavors

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”, recently published by the eHealth Initiative.

Additionally, the next few blog posts will include interviews from entrepreneurs using new digital tools including Big Data, open source and social networking. These tools help leverage the power of patients to help bring us all more personalized healthcare.

An interesting question is how to use the Personal Data generated by all these new communities. This is described in an RWJ report “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. Organizations include The Rare Genomics Institute and The American Autoimmune Related Diseases Association. For more examples, you can look at The Multiple Myeloma Foundation and the Celiac Disease Foundation.

Do you think that patient communities can create global knowledge networks that lead to earlier conservative intervention for autoimmune communities?


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