The e-Health Perspectives of e-Patient Dave (Part 2)

Capital I Innovation Interview Series – Number 3

The e-Perspectives of e-Patient Dave 

e-Patient Daveis a world renowned keynote speaker, author, government policy advisor, e-patient advocate and champion of participatory medicine.  He, along with his physician, Dr. Danny Sands, has been named one of the “Twenty People Making Healthcare Better.”  An acclaimed speaker, Dave has received a myriad of standing ovations for his penetrative presentations, including his TEDTalk in the Netherlands this year.

As I have made clear in an earlier post, if there is anywhere that Capital I Innovationis essential, I believe it is in the field of eHealth.  This is one of the reasons I was so drawn to e-Patient Dave, an Innovative patient and  leader in what I call meHealth.

meHealth expects that I, you, we, take it upon ourselves to expect (if not demand) that all healthcare stakeholders at all levels work together to ensure that affordable, effective healthcare is available to one and all. There may be no one better known for voicing this expectation that e-Patient Dave deBronkart.

Why did you become a healthcare advocate?

Funny you should ask. During his presidential campaign JFK was asked how he became a war hero, and he answered, “It was involuntary. They sank my boat.” Same here.

I was going through life ignoring healthcare, as most of us do – it was always like the fire department: if I ever need it, it’ll be there.  And when my crisis hit, it was there for me – pretty much.

In hindsight there were avoidable errors, but all in all they saved my life, brilliantly, including gluing and screwing my leg back together when the cancer ate such a big hole [in it].

A year later my physician, Dr. Danny Sands, invited me to go on a retreat with the e-patients.net gang, with whom he’d been discussing what we now call e-patients. I read the e-patient white paper, and it blew my mind.  My little hobby blog took a sharp right turn, as if it had bounced off a boulder.  I renamed it from “the New Life of Patient Dave” to “e-Patient Dave,” and started reading books about healthcare.

And here’s the power of social media when combined with conventional print:  A year later, I tried to move my hospital records into Google Health.  What came across was garbage. It wasn’t Google’s fault – the hospital sent garbage.

That knocked me for a loop, and it took me weeks to figure out what to say.  I finally wrote a 3500 word blog post about it.

The next thing I knew, the Boston Globe called because, unbeknownst to me, medical data was a hot topic in Washington.  They wrote about my post on page 1, and we were off to the races:  speaking, policy meetings in Washington, thousands of Twitter followers, and ten months later, the end of my old career and the start of this [advocacy].

Involuntary indeed; but I’m so happy it happened, because heaven knows healthcare needs to let patients help.

What responsibility do you feel in your position as a healthcare advocate?

Not a day goes by that I don’t think of the thousands of people who, just that day, got the news they never wanted to hear.  Four thousand people a day in the US discover they have cancer.  That alone is enough.  Heaven knows how many people get other life-altering or –ending news.

Five hundred times a day, in the U.S., medical errors accidentally kill someone over age 65.  For all these people, and their families, I want to improve healthcare.

I also think about the many, many healthcare employees whose lives are sometimes ruined by involvement in a horrible medical error.  In some cases these deaths or ‘harms’ are caused by negligence, but too often they’re the inevitable result of healthcare methods that simply are not as matured, not as reliable, not as bullet-proofed, as the rest of life.  As we are all in denial about it, there’s zero chance we’ll get serious about dealing with it.  So the pain continues.

Last month in Seattle, I believe, a skilled nurse killed herself after her involvement in a tragic pediatric death that became a media circus.  Shame on those media people, for hounding that woman to her death.

The responsibility I feel is to wake people up about the complexity and riskiness of healthcare, to get us out of denial – patients and providers alike – so we can work together to improve processes and, in the interim, manage and minimize risks as best we can.  [It’s about] participatory medicine.

Who is the Healthcare customer – is it only the patient, or do you include healthcare providers and managers?

“I think the answer is that, in all cases, the customer is not well served – with the sole exception of the insurance companies… when I say patient, to me that’s a collective noun. Its everybody who’s on the receiving end of the professional services.”

For more Dave’s answer to this question, click play on the video!

In our lead up to this interview, we joked about wanting to change the world.  If you could change the world, how would you do so, and what tools do you need to make it happen?

Well of course, world peace, a stable population, plenty of food, mutual care, a healthy nourishing upbringing for every child, and all kinds of things. (Caution -I’m trained in how to visualize a future without concern for its current feasibility.)

I wasn’t joking about changing the world. Cynics are wrong; change happens all the time. For heaven’s sake, the Web was only born 17 years ago. (The Mozilla browser arrived in April 1994.) That’s only 6300 days ago.

Cynics should think about this: if everywhere you turn, the world looks like shit, perhaps you have your head up your ass.

So I am changing the world (and so are you), and it’s not a joke. My tools are stories – mine and others’ – because stories well told are potent change agents; [I use] humor, because it’s more engaging than just tragedy; logic, for instance explaining why it’s reasonable for patients to be active participants; evidence; and social media.

How do you define Innovation in Healthcare? [Note: throughout his answer Dave refers to the KimmiC definition of ‘Capital I’ Innovation: Something that was not there before, upon which new economies and cultures can be built.]

Trick question – Having said that …

What’s “not there before” in healthcare is to start with the question, “What would the customer like to see?”

I’m increasingly certain that the principal source of dysfunction in healthcare is that it’s the only industry I know where the definition of quality doesn’t start with what the customer wants.  Once we ignore that, then all our best efforts to improve other things will pursue other goals, but not home in on more satisfied customers.

Want evidence of this?  Consider that hardly anyone in healthcare can even imagine what this question means, much less that it might be important. 🙂

And yes, entire new economies can be built on this. Entire new ecosystems, in fact.

The other “what’s not there before” is for all our medical data – all your medical data – to be in your hands, your property, for you to take with you wherever you want.

Aside from putting the power where it belongs – in your hands – it will enable another new ecosystem of personal health data tools.

Combine the two, and we could someday see a health ecosystem that’s built on what people want, not what professionals say they should want.

The third ‘Capital I’ is uncommon today and could be immensely powerful:  a vast and widely-known network of patient communities for every condition under the sun.

Not only is there great practical value in connecting with other patients for disease management and day-to-day tips, communities enable information pathways that bypass the limitations of clinical trials and medical journals.  Those methods are focused on the scientific method, which is great – it saved my life – but by their nature those methods can’t measure anything that cannot be subjected to trials, and can’t identify factors where the scientific method is weak.

Finally, consumer communities know about findings that fail or side effects that arise after the articles are published – and communities spread the word far more rapidly than traditional channels.

What do you think are the main barriers to the success of healthcare innovation?

This too is too big for me to answer.  Having said that, within the narrow scope of my own knowledge, the main barrier I do know of is the lack of that belief that the patient ought to define care’s objectives.  If every clinician and hospital executive truly believed that everything they do is to accomplish whatever we [the patients]  want, much would change.

And [now] consider how unimaginable or senseless that seems to them.

If you could give a ‘Capital I’ Innovation in Healthcare Award to anyone, who would you nominate? 

I don’t know the whole industry.  Having said that, at this moment, within my very limited experience, I see these nominees. (I hesitate to say this because of whom I might leave out.)

• The current leadership of the U.S. Dept of Health & Human Services. They’re implementing truly patient-centered policies for the first time in generations. That is “that which was not, before.”
• The people in the Obama administration who by some miracle got US health reform passed. Almost every president since Roosevelt had tried. That is “that which was not, before.”
• Don Berwick, head of Medicare and Medicaid, who is implementing policies and freeing data which will empower real informed choice for consumers.
• Lucien Engelen at Radboud UMC in the Netherlands, for creating the REshape Academy, which is actively at work on reshaping the care relationship. That is “that which was not, before.”
• Regina Holliday, Medical Advocacy Muralist. A phenomenal story teller in words and paint, she has been putting a face on the human suffering from our dysfunctional system. That is “that which was not, before.”

Are you a patient patient?

Hell yes, presuming the care team is working competently and I’m not being subjected to waits for no good reason.

Though the last question I ask, it is no doubt the most important.. how is your health now?

My cancer is completely gone; for better and worse, I’m exactly back to where I was before the illness, including being a bit overweight. (When the treatment ended I’d achieved my ideal weight! Unfortunately I’ve gained it all back.)

The only clinical difference is that I have one less kidney and adrenal gland, and a bunch of steel that repaired my femur after it snapped from the cancer.

Personally, I’d say Dave has a lot more steel in him than just which repaired his femur. 

[Note: On July 23 Dave celebrated the fourth anniversary of his last dose of HDIL-2 (high dosage interleukin-2), the treatment that rapidly reversed the course of the cancer that was killing him.  He hasn’t had a drop of treatment – and thus not a single side effect – since then!]

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For more information on e-Patient Dave, check out:

• www.epatientdave.com his personal personal website,
• www.e-patients.net where he often posts blogs,
• www.ParticipatoryMedicine.org Society for Participatory Medicine, of  which he is co-chair,
• www.JoPM.org Journal of Participatory Medicine

(Kim and Dave Skype’d between from their homes in Sydney and Boston  on July 26, 2011. Part One of this series can be found here.)

(NOTE: Excuse the quality of the filming/lighting/all-other-ing of this interview.  Suffice it to say, Spielberg has no worries I’m going to be sitting in his chair anytime soon!)

Capital I Innovation Series Introduction