Learning from Smart Patients

Roni Zeiger, Gilles Frydman, and colleagues have been successfully plugging away for some time in the development of Smart Patients, "an online community where patients and caregivers learn from each other about treatments, clinical trials, the latest science, and how it all fits into the context of their experience."

A sign of the success is that a growing number of doctors and other clinicians have been asking if they might join Smart Patients to learn what the patients and caregivers are saying.  Roni and Gilles have been designing a way of allowing this but that still is respectful of a strong desire to keep the space devoted to the patients and caregivers.

So now, they are launching Learn from Smart Patients, to create learning materials based on conversations in Smart Patients--but the curated conversations are de-identified and used with patient permission.

Three health care institutions have signed up so far:

The George Washington University School of Nursing is piloting the service with Nurse Practitioner students studying the role of caregivers. 

Physicians at Allegheny Health Network (AHN) will use the new service to better understand the needs of cancer patients. 

At Cincinnati Children’s Hospital Medical Center (CCHMC), clinicians who care for patients and families affected by cystic fibrosis are reviewing and discussing issues that arise in the Smart Patients cystic fibrosis community. 

I'm hoping other centers decide to sign up, as I am really excited to see where this all leads.  I have a feeling it is going to lead to helpful insights and stronger partnerships between clinicians and families--consistent with my hope for more patient-driven care.