Ep028: “e-Patient Dave” on Patient Activism, Participatory Medicine, and the Science of Engagement

By May 2, 2017Podcast

We are all patients, but only one has come to be recognized as the face and voice for a growing community of activists encouraging the rise of participatory medicine. My guest today is a cancer survivor and patient advocate, Dave deBronkart, better known as e-Patient Dave.

The evolving field of health & medicine has many challenges, but having patients pro-actively participate in their medical decision-making shouldn’t be one of them. As an industry that has historically relied on the one-sided expertise of physicians, technology and the internet have fundamentally changed the game. Patients have much greater access to information than ever before.

So why then is it still so difficult to get patients to take charge of their health?  As it turns out, e-Patient Dave believes there is a science to patient engagement and behavior change that is not too different from how we describe the mechanism of action of a drug. On this episode, Dave shares what this means, what he has learned in his own personal journey on battling the ugly “C” word, what he believes is the fundamental difference between a patient and consumer, and what we need to do going forward so that patients play a more central and active role in their care.

I found this conversation to be both inspirational and informative as I hope you will too. e-Patient Dave is an inspiring human being who believes the voice of the patient needs to be heard around the world. All this and more on today’s episode.

Now, That’s Unusual.

About “e-Patient” Dave deBronkart

Dave deBronkart, better known as e-Patient Dave, was diagnosed with Stage IV kidney cancer in January of 2007. The best information gave him just 24 weeks to live, and with tumors in both lungs, several bones and muscle tissue, the prognosis was grim.

Lucky enough to be connected with an academic medical center, Boston’s Beth Israel Deaconess, he received superior care that leveraged the best available research. Once it was clear that he had beaten the disease, deBronkart became an activist, seeking to open the healthcare information system directly to patients on an unprecedented level, thus creating a new dynamic in how information is delivered, accessed and used by the patient.

Dave is the author of the highly rated Let Patients Help: A Patient Engagement Handbook and one of the world’s leading advocates for patient engagement. After beating stage IV kidney cancer in 2007 he became a blogger, health policy advisor and international keynote speaker. He is today the best-known spokesman for the patient engagement movement, attending over 500 conferences and policy meetings in fifteen countries, including testifying in Washington for patient access to the medical record under Meaningful Use.

A co-founder and chair emeritus of the Society for Participatory Medicine, e-Patient Dave has appeared in TimeU.S. NewsUSA TodayWiredMIT Technology Review, and the HealthLeaders cover story “Patient of the Future.” His writings have been published in the British Medical Journal, the Society for General Internal Medicine Forum, iHealthBeat, and the conference journal of the American Society for Clinical Oncology. In 2009 HealthLeaders named him and his doctor to their annual list of “20 People Who Make Healthcare Better,” and he’s appeared on the cover of Healthcare IT News and the Australian GP magazine Good Practice.

Key Interview Takeaways

The ‘e’ in e-patient stands for more than just ‘electronic.’ An e-patient is equipped, engaged, empowered and enabled to ask, “How can I help?”

When considering scientific literature, ask yourself, “Was this study done well?” e-Patient Dave has a great respect for the literature, but he understands that it can be unreliable.

Doctors are not trained how to examine and validate clinical studies, thus patients aren’t always receiving care based on the latest information.

Though we crave certainty, we live in uncertainty. Our body has just twelve ways to express a problem, yet there are thousands of conditions – and we expect diagnostic perfection from the medical community! e-Patient Dave argues that the patient and clinician “sit together in the uncertainty” and devise a plan of action together.

The patient world is evolving from that of a passive recipient of wisdom to active partner, in parallel to other social movements. (Though some patients prefer to be taken care of rather than activated.)

Patient engagement is the next blockbuster drug. e-Patient Dave anticipates that the next breakthroughs in medicine will happen in the area of behavioral economics.

Semantics matter in the discussion of patients versus consumers. The words we choose create a world inside the mind of the listener, with connotations based on experience. One might think of a ‘consumer’ as a simple pawn of the machine, or view a ‘consumer’ as an informed decision-maker.

We do not know the active ingredient of patient engagement. e-Patient Dave asserts that engagement is the vehicle, but the mystery is in identifying the mechanism of action. We need to get scientific, developing hypotheses around patient participation that we can test, so that people who run healthcare systems have evidence for building this new world.

There are two serious difficulties distinctive to the US healthcare system: One is the difficulty patients face in gaining access to their medical records, and the second is the tangled nature of the American financial medical system – which e-Patient Dave compares to a “cancer that can’t stop killing its host.”

We must modify the medical literature to include participatory findings. Seeking stories from the patient community helped save e-Patient Dave’s life, and he is on a mission to provide widespread access to that kind of incredibly valuable information.

“You’ve got to ask not, ‘What the hell is wrong here?’ but, ‘What can be said that will make any difference.’”

Resources

Meet e-Patient Dave TED Talk

Let Patients Help! by Dave deBronkart and Eric J. Topol MD

smartpatients.com

The Better Health While Aging Podcast

New York Times Article: “How Behavioral Economics Can Produce Better Health Care” by Dhruv Khullar

The Emperor of All Maladies: A Biography of Cancer  by Siddhartha Mukherjee

Kaiser Family Foundation 2016 Employer Health Benefits Survey

Connect with Dave deBronkart

epatientdave.com

Facebook

Twitter

Books by e-Patient Dave

e-patients.net

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