Advocacy Program: A Chat with Dave deBronkart
A decade after his first foray into digital health, Dave continues to push us all to go beyond the limits of the ‘old view’ of healthcare
Dave deBronkart, widely known as “e-Patient Dave”, is a cancer survivor, advocate, activist, and inspiration to many.
Carium’s Chief Transformation Officer, Lygeia Ricciardi, first met Dave at a Health 2.0 conference on April 22, 2009, long before most patient advocates and other healthcare stakeholders had digital health on their radar. Impressed by Dave’s thoughtful, articulate, and passionate response to mishaps he experienced while trying to access his own medical records online, she invited him to Washington D.C. to share his powerful patient story with policymakers and business leaders.
Ten years later, Dave is an internationally-known icon of patient engagement. At Carium, our team was fortunate to have him participate in our Advocacy Program. He shared his health journey and expertise to inspire us to go beyond the limits of the “old view” of healthcare. We chatted with Dave through Google Meet, or, as Dave called it, the “spooky spy camera in the corner of the ceiling.” Our serious discussion about where healthcare is and where it needs to go was peppered with a lot of laughs, thanks to Dave’s irrepressible sense of humor.
I hope you find his interview as insightful and encouraging as we did.
Tell us about you and your health journey.
In 2007, I discovered through a routine shoulder X-ray that I was almost dead with stage IV kidney cancer, with a median survival of 24 weeks. And this is when I started to learn about patient activation.
Several years earlier I had actively sought out what I now would refer to as an “empowering participatory doctor.” I had no reason at that time to think that any part of the health system would be less than stellar if I got in trouble, but I wanted someone who would welcome my questions and be a good partner, and that turned out to be Dr. Danny Sands.
A pivotal moment in my life was when Dr. Sands introduced me to a patient community for people with kidney cancer.
Welcome to the Club that Nobody Wants to Belong to
I introduced myself and was instantly greeted with, “Welcome to the club that nobody wants to belong to!” They understood the disease from my perspective — the person whose life was at risk, with everything on the line — and also had all kinds of practical information about treatments and just plain living with the disease. Within just two hours, I had recommendations for specific treatments, a local physician, and more. In my experience, the patient community made me feel less alone.
Months later when the start of treatment came near, I asked my oncologist how I could prepare for the side effects of the recommended treatment — which sometimes kill people — and his response was that nobody had ever asked that before! So, thanks to Danny’s guidance, I turned to the patient community for real answers and got 16 first-hand stories from people who’d survived this drug.
It’s important to note that I didn’t just take this internet information and run with it — I shared it with my oncologist, and he confirmed that it matched his team’s experiences. I was diagnosed in January, my kidney was removed in March, the interleukin immunotherapy went from April to July… and I haven’t had a drop of anything since.
According to my oncologist¹, the information I received from the patient community may have helped save my life, and years later, he told me he wished he could bottle what I did so he could administer it to other patients.
What’s important to you?
Dr. Sands wears a button on his white coat that says, “What’s important to you?”
Only I, and uniquely I, can say what feels important to me. Different people, with different characteristics of problems, will have different metrics for what’s important to them.
It’s impossible to overstate how important that is, in the era of patient-centered care. I knew a man who was diagnosed with kidney cancer the same month I was, I got better, he got better, and years later he had a relapse. This time around, there were more medications to choose from, so he had to determine his priorities. The dominant factor on his landscape was that his wife had just been diagnosed with metastatic breast cancer, and he was going to be the primary caregiver, so among all the side effects, by far the most important to him was the impact on his own fatigue level.
Nudging to Behavior Change
In 2014, at my regular check-up, my A1C was elevated, so I was referred to the YMCA diabetes prevention program (DPP). I had a paper logbook, the diet wasn’t very strict and the general encouragement was motivating. People who say, ‘Old people aren’t going to change their behavior,’ don’t know what they’re talking about. After a year of going for walks, my feet started saying, ‘Come on let’s trot,’ and I became a runner, running my first mile at age 65.
What really amazed me is that there was nothing rigorous, strict or methodical in the DPP program — it really was about nudging me to behavior change.
What has been most satisfying about your healthcare experience?
The most satisfying part of my personal healthcare journey has been doctors welcoming my involvement once I learned to ask for what I want. I introduce myself to new clinicians by saying, “I’m the kind of person who likes to understand as much as I can. Can I ask some questions?” If they respond, “I’ll ask the questions,” I’ll find somebody else. I’m discovering that when I learn to ask for what I want, it’s pretty easy for me to get it — because that’s the kind of doctor I choose.
What has been most difficult about your healthcare experience?
One frustration has been being unable to manage the cost of care that I’m seeking so I can make an informed decision, and the other has been the logistical difficulty with access to information and services.
In Spain, I mentioned to someone that a friend back home was trying to decide whether she should take her baby to the doctor because of a fever, and they looked at me like I was nuts because it’s free to go to the doctor in Spain. Naturally, they go get things looked at at the earliest stage — and that’s a great difficulty here in the United States.
In the US, the deck is entirely stacked against us, due in no small part to the opacity of healthcare pricing. In a world in which everyone shares the same priorities, everything you do to improve somebody’s health, self-sufficiency and self-efficacy get compensated, but instead, we have people grabbing for money and not aligned at all when it comes to priorities.
Access and Convenience
If good quality clinics are accessible — including through telemedicine — then I’m more likely to seek care early in the process. A great majority of what I go to Dr. Sands for, more than an hour away, doesn’t require touch, and a video call would be sufficient. I had a situation 5 years ago in Switzerland — we fired up Skype, I pointed at the spot on my leg, and he told me to go find a clinic. I want to be able to do things that easily.
What are you most concerned about with regard to healthcare?
Generally, I like innovations, like emerging digital health tools. But in developing or providing such tools, we’re discovering there’s a whole lot of trouble companies can get themselves into if either they:
- Don’t know what they’re doing data-wise
- Have ethical problems
Recently, intimate health apps, like a period-tracking app, were shoveling data to Facebook, even for people who don’t have a Facebook account. There’s a mix of pig-headedness in part of the industry, and no one pressing them to be competent. You also have the covert use of sketchy-quality data against somebody, without their knowledge, with no way to appeal — and in my view, that’s just a messed up and corrupt situation!
Challenges extend to health insurance, too. If I’m going to insure a large population of people, patterns are relevant to me in figuring out my rates. But when you turn around and assume that a pattern applies to an individual and penalize them for something they’re not doing, it’s unfair, and also removes anyone’s incentive to improve their own behavior. If you’re healthy, but live in a zip code where 60% of people smoke cigarettes with triple the usual rate of lung cancer, a higher insurance rate shouldn’t be imposed on you.
Maybe it’s the old hippie in me, but I strongly believe that the best possible future for us all is if access to information and the ability to act move down to the grassroots. It’s not a zero-sum game — if I know something, it doesn’t take away from how much my physician knows. It increases the sum of knowledge in the system.
If you had a magic wand, what would you change about the health system?
First and foremost, economic incentives would be aligned.
Second, everyone I want would have access to my health data — and other people wouldn’t. There’s high motivation and need for convenience and flexibility.
Third, we need to help the helpers — this can be people caring for their children, parents, or family members living with mental health concerns. Take care of what matters to caregivers and always try to be convenient and flexible: that’s my ideal vision of the future of care.
Helping people take care of themselves and the people they care for — empowered by the useful parts of technology, and enabled by the information that lets them know when it’s time to act.
Can you imagine if someone wanted to lose weight, but didn’t have access to a bathroom scale? If I want to improve my heart rate or blood pressure, without seeing the numbers it’s like driving on a highway and not being able to see my speedometer. To give people their best shot at solving a health problem, you need to give them all the necessary information.
Science Advances One Funeral at a Time
There is a lot of poor quality science in medical literature. I don’t know if it’s amazing, or entirely predictable, that a mature patient community knows that very well, because they’ve seen people follow advice that’s in the literature and it didn’t pan out. The moderator of my online group lost her husband because he had kidney cancer and he ended up getting whole-brain radiation, which years later was still being recommended though it too often caused fatal problems.
I was stunned to learn that on average, it takes 17 years for half of doctors to adopt new knowledge. In my industry, the typesetting industry, if you were 17 years behind the newest technology, you were out of business — but not in medicine. Max Planck, who originated Quantum Mechanics which won him a Nobel Prize for Physics, said, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” ²
For someone to just plain refuse to see the evidence illustrates how people get their mindset stuck within a paradigm. In medicine, the relevant paradigm is that medical training is hard — it’s hard to become a doctor or a Ph.D. researcher — so what can somebody contribute to medicine if they don’t have that training?
People are just now really starting to do what I and others envisioned 10 years ago. The world continues to change. Technology is evolving, and I’ve learned not to be overly optimistic. We’re beginning to see an awakening of consumer consciousness, which includes people being aware of their own responsibility for their health, and you’re more likely to see new views in younger populations.
Sensors and Gauges are to Aviation what Data is to Medicine
Once upon a time in the history of aviation, it was literally all seat-of-the-pants. And then they got sensors, gauges, and more sensors and gauges — it got to the point where the dashboard of a plane became overwhelming, and numbers of crashes and deaths increased.
The pilot’s attention — not the data! — was a precious commodity, and it turned out, the key to success was to put a layer in between the pilot and the raw information that figured out what needed the pilot’s attention. Lots of data is important, but it’s even more important to figure out what warrants people’s attention. In healthcare, we need to hook up to Fast Healthcare Interoperability Resources (FHIR) data streams, then filtering so only the prominent, relevant important stuff is brought to people’s attention.
Don’t get caught with your mind tethered to past reality, like one of Max Planck’s dead physicists. The world has changed! Keep up, or be obsolete.
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