Even Fainting Goats have heroes

Meet epatient Dave!!   I encountered Dave last year online through a TED Talk and was inspired by his story of empowered patients and survival.    Dave expounds on the idea that the most underutilized resource in healthcare is the patient and he should know, he beat the odds and is alive today to tell his story.  Dave deBronkart: Meet e-Patient Dave 

 “e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.  He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.  You can follow Dave at epatientdave.com.

The amazing element to Dave’s journey (beyond his survival) was that he learned about the specialists and clinical trial that saved his life on the internet from other cancer survivors, not from his doctors.  Dave is now well known for the #epatient movement but I wonder how intimidating it was for him at the time of his diagnosis to be that voice in the wilderness, working against the healthcare system to get control of his data to save his life.  I hope that Dave is feeling some satisfaction these days in that his voice continues to contribute to the ripple effect of the empowered patient that is finally being heard and understood.

In the US, the Affordable Healthcare Act (otherwise known as Obamacare) mapped out a plan to incent doctors to have their patient’s access, share or download their records online.  In order to receive the Incentive, doctors have to prove that 5% of their patient’s access download or transmit their medical records.  5% is a small start, but it’s a start.  With the American election now over and Obama securely seated in the White House for the next 4 years, the work on empowering patients through Meaningful Use can continue in the United States.  NOTE:  Apologies for the physician-centric hyperlink, there is sadly little education material out there on Meaningful Use for the people who need to understand it most, healthcare consumers. 

There is a lot of policy debate and medical opinion out there about patient access Rights and Responsibilities 101, but the success of empowering patients will only come from one place.  It will come from individuals recognizing and demanding control of their health information.  Dave did it, you can do it too, just say Gimme my Dam Data.

It’s your health information.  It’s your health.  Manage it well.