Dave deBronkart is a Freedom Fighter. In 2007, Dave battled metastatic cancer and emerged a passionate advocate for leveraging the Web to connect patients with the content and support and inspiration they need to cope with the human consequences of disease.
The Web has brought forth new ways of connecting the world and brings with it questions and answers about how to safely and effectively extend the power of health care from face-to-face meetings to remote but important regions of human experience. It’s important for us to understand the integrative nature of health care: no single perspective will yield approaches that work. Rather, we will need the perspective of all participants.
Nevertheless, the view of patients is paramount – how they respond to disease processes, what they need in terms of information and care and why their unique psychological responses to treatments must be carefully appreciated. We need, therefore, for patients (who are ourselves) to be actively engaged in the evolution towards remarkable health care. Because if health care isn’t remarkable, it’s probably dangerous.
Therefore, since patients are central to health care, we must listen to them as they offer their time and passion and ideas. The novel concept of epatient is part of the new landscape of discussion currently taking place in health care. The idea of “e-patient” has emerged in recent years. But what exactly is an e-patient? What does the “e” stand for? It may not be what you think. Which is why I asked Dave to tell us his story, his definition of e-patient and his hopes about health care in the 21st Century.
You seem to have received a lot of attention as a passionate leader in e-patient health. What got you started in your advocacy?
When people asked JFK how he became a war hero, he said “It was easy – they sank my boat.” Same with me: I was minding my own business, then a lucky shoulder x-ray incidentally revealed kidney cancer that had spread to my lung – and other lung, and skull, and femur and arm. I was dying. And suddenly I really cared what could make a difference, and I pulled out every trick in the book, every resource at my disposal.
I used the internet in every way possible, from making sure I had the best possible doctors to finding other patients to forming social communities and reading my hospital data online. And when it was all over, I learned that what I’d done was the definition of an e-patient.
So I started calling myself one.
It’s funny, because some people think I started e-patients.net. Hardly. To the contrary, my doctor was a member. I’d already been blogging as “Patient Dave,” so I just added the e.
What’s your definition of an epatient? What are the major hurdles patients have with respect to online interactions?
“Doc Tom” Ferguson, who died in 2006, was the founder of the e-patient movement and creator of the term. He said e-patients are Empowered, Engaged, Equipped and Enabled. Lately many people have added Educated, including about Evidence.
Today the first E’s are being empowered and engaged in your care. In a way the internet is almost incidental: people use the internet for everything, even ordering pizzas, so we naturally use it as patients too.
Note that this empowering patients has nothing to do with disempowering physicians and nurses; this is participatory, collaborative, a partnership. That’s why, when Ferguson’s “e-Patient Scholars Working Group” incorporated this year, we didn’t name it Freedom From Physicians – it’s the Society for Participatory Medicine. In Ferguson’s white paper, Conclusion #7 was “The best way to improve healthcare is to make it more collaborative.”
Hurdles? The main hurdle most new e-patients overcome is, as my doctor puts it, “embracing knowledge symmetry” – the idea that they have something to offer, that knowledge flow isn’t a one-way street. That’s the Empowered e. And then there’s realizing it and getting off your butt, getting engaged in your care and your overall well-being.
It’s about realizing that we as individuals, empowered by the internet, now have much more to contribute to our care than we realized.
A hundred years ago – perhaps even fifty – access to real medical information indeed came only through medical schools. But today the internet has connected us with facts and with each other, and that has truly changed everything. If you doubt this, read the e-patient white paper – written mostly by physicians – titled “ e-Patients: How They Can Help Us Heal Healthcare.” It’s free, at the top of e-Patients.net.
Of course, access to information online doesn’t make you brilliant any more than access to books does. It enables you, if you’re equipped. So the next hurdle for some is to realize they don’t know everything. But if you’ve got a participatory empowering physician, that’s easy: you ask “What do you think about this?”
What have been the reactions to your efforts by healthcare professionals? What’s your sense of the industry’s receptivity to the e-patient movement in general?
Providers have been great to me – at least the ones who speak to me. And I really can’t speak for or about anyone I haven’t spoken with.
I’ve seen enough change in industry – since before the first PC – to know change can be hard. Imagine spending your life getting good at the waltz, then learning to twist, then falling into a mosh pit. Yikes. That’s why Kaiser has reported that of the $6 billion they spent on their EMR, only 1/3 was spent on the equipment; the rest has been people issues.
The great @TedEytan (TedEytan.com) put it this way: “People don’t know how to dance to this new music yet. Teach them.” And that is the job of the Society for Participatory Medicine. Call it “dancing lessons” if you want.
Which technologies in health care do you feel are the most effective in enhancing the ongoing relationships between patients and healthcare professionals? Are there some characteristics of patient-provider relations which technology can’t address?
Email and social media are already making it infinitely more efficient for patients and providers to connect for non-urgent issues. Kaiser has great data showing that email reduces office visits and lets questionable symptoms be raised earlier, because the logistical hurdle of that first touch is so small.
I just about puke when I hear dino-physicians whine about “I’m not gonna do email [which my patients want] because insurance won’t pay me, and I’m not doing anything I don’t get paid for.” This is the sound of a dinosaur dying – dying of FFSS, “Fee For Service syndrome.” It is the bellows of dysfunction, echoing forth from a system that is optimized for anything except getting care delivered to the people who need it. I am about to start calling for providers and patients alike to protest in disgust against the symptoms of FFSS.
The hell of it, for providers, and yes I mean you, hospital executives and physicians and everyone, is that if you are stodgy and behind the times, you may get blind-sided: your market (your customers, your patients) is (a) adopting new tools far faster than you are, and (b) moving through the age pipeline far faster that you realize.
Look, this year’s med school graduates cannot remember when there was no email! Yet just this week a friend’s surgeon’s office claimed “We don’t have access to email.” Really? A business in 2009 that doesn’t have email? Or were they just lying?
Either way, those days are ending. Bye-bye, FFSS. Consider: there is no clinic environment (Mayo, Geisinger, etc, where the docs are employees) that doesn’t do email. Why? Because when you’re paid to keep people well, you don’t mind hearing from them.
But no technology will replace the human skills, human intuition, human touch. It’ll be a long, long time before technology replaces Dr. Danny Sands, Dr. David McDermott, Nurse Practitioner Mee Young Lee.
In The Innovator’s Prescription Christensen and Hwang talk about the difference between “precision medicine” and “intuitive medicine.” Precision is the stuff that’s well understood now, from colds to knee replacements and even much cardiac surgery, I’m told. Those things are pretty much handled routinely. But the mind, heart, and compassion of a great nurse or MD will not be replaced by robots.
What’s your dream for the future of patient care?
Participatory medicine: a new, empowered partnership that is far more satisfying to both providers and patients. The Society’s new Journal of Participatory Medicine will advance our knowledge of how to make patient-provider relationships more effective.
Not surprisingly, the Journal is wide open to contributions from people who have any kind of work in this field. Because it’s new, we’re open to well thought out exploratory and observational submissions as well as controlled trials. We have a fully transparent peer review process, open to all sorts of participation, including reviews by patients. So speak up, submit, contribute!
Our vision – my vision – is that in partnership, we’ll all have a lot more fun and feel less burden – because we have new partners.
FOLLOW THE LEADER
Today and tomorrow (November 12, 13 2009), the FDA is holding Public Hearings about Social Media. It would have been nice to see much more patient representation, since there is a very real chance that both FDA and the industries it regulates are each overlooking the wider opportunities they have to be remarkable online and offline.
My personal concern, is that the shadow of Edward Bernays – specifically his legacy of Social Engineering to consumerize and shape mass opinion and perception and behavior – will continue to follow Pharma into the 21st Century.
Pharma’s task is to produce safe and effective products and services for patients. FDA’s task is the ensure that Pharma’s claims and its products are in fact safe and effective. But both groups were forged in the mass medium broadcasting days of the 20th Century. The Web is radically undermining that model and demands radical re-thinking about the generation, exchange and consumption of information. We must have the participation of Freedom Fighters like epatients who can liberate us from the manipulative forces and tendencies and temptations which 20th Century media brought forth into our world.
It will take the brilliance and commitment and creativity and ethics of the life scientists and doctors and nurses and engineers (and marketers) to set the tone for how Pharma and related industries continue to heroically fight disease and help alleviate the suffering of tens of millions of people. To that end, we will need to create communities where patients can exchange perspectives with the people who dedicate their lives to improving the quality of health care.
Thank you, Dave for telling the world your story, for your dedication to helping those who suffer, and for giving hope in a time of upending change.
So what are your views on the e-patient movement? Is it on the right track? Who are your heros who are helping us move toward a healthcare system we can call remarkable?
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