Dave deBronkart: ePatient Dave
In January 2007, a routine shoulder x-ray incidentally disclosed a shadow in the lung, that turned out to be metastasized kidney cancer (stage IV, grade 4 renal cell carcinoma). His median survival time at diagnosis was 24 weeks. A frequently cited aspect of Dave’s case is the multiple ways he used the internet.
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ABOUT Dave deBronkart
“Dave deBronkart, better known as ‘e-Patient Dave’, he was diagnosed in January 2007 with kidney cancer at a very late stage. Odds were stacked against him, with tumours in both lungs, several bones, and muscle tissue.
He received great treatment: extensive surgery and biologic therapy helped him win the battle over his cancer. His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease.
Dave is now actively engaged in opening health care information directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.
Before and during his illness Dave had been writing journals and blog posts about his experiences. On the hospital’s blog he signed himself “Patient Dave”; upon recovery from near-death he started a blog “The New Life of Patient Dave.”
In January 2008 he learned of the so-called “e-Patient White Paper”, that described how patients were using the Internet to participate actively in their care. He recognised it as a match for his own actions during his illness and renamed himself ‘e-Patient Dave’, and his blog The New Life of e-Patient Dave.
In early 2009 Dave decided to activate his hospital’s option to transfer his personal health data into Google Health, Google’s personal health record (PHR) system. As described in a 3300 word blog post, the transferred data contained much erroneous information: a false medication warning, exaggerated diagnoses, and conditions he’d never had.
In addition, the system failed to transfer existing information such as laboratory results, radiology reports and allergies. Dave felt strongly that patients should be able to access their own medical data, check it for errors, question it, and take it with them to another care provider if they wanted. In May 2009, citing ‘a bumpy and public transition of his medical records’, the Boston Globe called him ‘a recognised online champion’ of participatory medicine.”
The VIDEO
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