August 2010 Man of the Month: E-Patient Dave
August 10th, 2010
By Robin Strongin. E-Patient Dave: One Patient Advocate’s Survival Story and What We Can Learn From Him—How to be an Empowered, Engaged, Equipped and Enabled Patient
Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0
Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights. In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.
I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all. And then I found out I was almost dead.
That’s how my interview with Dave started.
Dave 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 his lungs, bones, and muscle tissue, his prognosis was dire. Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.
Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful 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.
Technology and Patient Advocacy: An Author is Born
Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system. This was not the case for Dave. He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.
Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online. So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”
While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:
- Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
- Dave used the web to access information about his disease;
- He joined the Association of Cancer Online Resources, an expert patient community; and
- A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him. He started an online journal and support community on CaringBridge.
Many people suggested to Dave that he should write a book about his incredible journey. But one man, Dave’s friend George Alexander, presented Dave with a tremendous gift: he took Dave’s online journal and blogs, the essence of everything Dave had been through as well as the lessons learned, and through his Changing Outlook Press, worked with Dave to publish Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and What Healthcare Can Learn From It).
The book, available on Amazon, pulls you in. I couldn’t stop reading it. Dave and I are Facebook friends, he follows Disruptive Women on Twitter, and I was very aware of his contributions to patient advocacy. But it wasn’t until I sat down with the book and started at the beginning that I realized the phenomenal power of Dave and his work.
The book is not only a page turning chronology of Dave’s story, but it contains very useful information: lessons in patient empowerment, thoughts on statistics and medical evidence, e-Patient white paper chapter summaries, and finding online support groups. Not to mention it has introductory essays by two previous Disruptive Women in Health Care Men of the Month: Matthew Holt and Paul Levy.
E-Patients and Participatory Medicine: An Advocate is Born
As Dave was no stranger to the online world and blogging prior to falling ill, he was invited by his primary care physician, (one year after his diagnosis) to join the annual retreat of the e-Patient Scholars Working Group, founded by the late Tom Ferguson MD (to whom Dave’s book is dedicated). “My mind just exploded. That was January 2008, one year after my diagnosis. I couldn’t stop reading everything on the epatients.net site – how e-patients can help us ‘heal’ health care – and I renamed my blog. Good-bye Patient Dave, Hello e-Patient Dave.”
e-Patients: How They Can Help Us Heal Healthcare
Since that time, e-Patient Dave has been very involved with the e-Patient and Participatory Medicine movement and is currently on the Board (a founding co-chair) of the Society for Participatory Medicine, a 501(c)3 public charity, which “aims to advance the understanding of physicians and other professionals in the importance of well-informed, empowered and engaged patients making informed decisions about their care and treatment.”
As the Society’s website says:
Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.
Today he’s applying his previous career experience, in marketing and public speaking, to evangelizing patient engagement. A keynote speaker who often leaves jaws dropping, he received an audience rating of 4.9 out of 5 at this year’s ICSI / IHI Colloquium. His busy fall schedule is at www.ePatientDave.com/schedule and videos of past talks can be seen at www.ePatientDave.com/speaking.
Dave reiterated to me that on-line access gets him access to information but doesn’t make him an oncologist. But it does help him be an active participant in his care.
I asked him what advice he would like to share with other patients. Here are some highlights:
- Empowerment is not just about using the Internet—speak up for what you want
- Trust Yourself – you can help far more than you might imagine—get engaged
- It’s absolutely vital for people to actively check and follow up with their health care professionals—to obtain lab results and other critical information
“Some day our medical system might be absolutely reliable to do everything right – until then, it behooves us all to be actively involved in our care….Patients can help—more than they realize.”
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