e-Patient Dave Speaking on Patient Engagement in Boothbay Harbor, ME

Posted Tuesday, July 1, 2014 in Innovation by Patricia Seybold

In 2007, Dave deBronkart was diagnosed with stage IV, grade 4 metastatic renal cell carcinoma. He had bone metastases in his femur (which eventually fractured), ulna, and cranium; five metastases in his lungs; and muscle metastases in his thigh and tongue. Through active engagement and research, Dave partnered with an online patient community that has better information than most hospitals.

Dave deBronkart with Dr. Danny SandsThis online patient resource, Acor.org, was recommended to Dave by his primary care physician, Dr. Danny Sands. Within two hours of posting his first message, he got facts and practical advice that, to this day, don’t exist in any journal article or establishment website. He was able to embark on a course of treatment that saved his life, with the support of a patient community that was knowledgeable about renal cell carcinoma. “I’ve since learned that three out of four patients with metastatic renal cell cancer never hear of the treatment I got, high dosage interleukin-2 (IL-2). At the time, it was the only drug that sometimes produced this result.”

A superb surgeon removed Dave’s kidney and adrenal gland; another repaired his femur (twice), and a skilled oncology team tended him through a difficult and dangerous treatment. Six months after diagnosis, his treatment ended: He hasn’t had a drop of anything since. Today he is well and he has made it his mission to speak publically about how taking control of his own health and treatment saved his life. Now 300 speeches, and many continents later, he is coming to Boothbay because he has heard about our local healthcare situation (loss of hospital, ER, many local services and rehab beds), as we struggle to take more control over our own health and wellness.

Dave’s primary doctor, Danny Sands, is a pioneer of the “e-patient” movement (empowered, engaged, equipped, enabled), and Dave has adopted the nickname “e-Patient Dave” in his blogging, speaking, and policy work.

Dave’s Prescription:

Each patient needs to take more control over his or her own medical well-being, in partnership with clinicians and, when necessary, on our own. That means owning our own patient records, seeking expert advice from experienced patients as well as clinicians, and insisting on being “engaged patients” involved in shared decision-making. In his informative and inspirational talk, Dave will tell us what tools he recommends for us to manage our own medical records, and to monitor or own health. He’ll tell us how to assess what online resources are trustworthy and useful. He’ll explain how to engage with both primary care physicians and specialists to ensure thatyou are being heard and are getting what you need.

Being responsible for your care applies to every part of your healthcare world, Dave explains. In fact, if Dave hadn’t had insurance, and hadn’t gone for a routine checkup, and hadn’t connected years earlier with a doctor he likes at an up-to-date academic hospital, he might be dead today – because you can’t benefit from medicine you can’t get.

Dave will also tell us what he sees going on in the larger healthcare industry—both from a policy and a practice point of view. Dave consults regularly with DHHS in Washington D.C., and has met with a large number of the healthcare systems in this country and abroad. He has a unique perspective on how the healthcare/health insurance industry is being transformed. He cites a Dr. Eric Topol’s great book “Creative Destruction of Medicine” – as patients take control of the key asset that the entire industry revolves around: our own medical information. Once patients, not healthcare providers and insurers, control our own information, we will be more empowered to ensure that the treatment and care we receive is the most appropriate for us as individuals.

Please join us on Thursday, July 17th at St. Columba’s Church on Emery Lane in Boothbay Harbor, ME, at 6:30 p.m., to hear and engage with “e-Patient Dave”. This “Third Thursday” Wellness Forum is sponsored by the Boothbay Region Health & Wellness Foundation. (Patty Seybold is the President of the Board.) You can learn more about Dave from his website: http://www.epatientdave.com, where you can get his books, or view his TedX talk or other videos.


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