Power to the Patient!
Pathways, a Scientific American magazine, has a long new article, The Rise of the Empowered Patient.
Fittingly, I’m just starting a full day meeting of the new Proleukin Patient Advisory Board in San Diego, so I haven’t read the article yet. More later.
Full title: “Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it)
This book is a digest of the cancer journal that I kept on CaringBridge.org in 2007, when I almost died of Stage IV kidney cancer, but survived. It’s my real-time notes about what it felt like at the time, especially how I used my attitude and mind to help all the medical efforts the doctors and nurses were doing. I had an incredibly supportive community of friends and family who posted responses every day, and many of those are included too.
It’s the approach I chose to take to the news that I had a lethal cancer – a summary of the advice I got in the first few weeks after diagnosis, before I even started my journal:
In my online community I told people “If I ever write a book about this, that’s what I’ll call it.” And I did.
Admittedly, that’s not a conventional approach to a deadly disease. But that’s the point. And the whole story’s true.
4,000 people a day (in the US alone) discover they have cancer, and face that moment of “What on earth do I do NOW??” I know that feeling. Some look for what to do next; others don’t even think they can do anything — they just think they’re screwed and go into depression. This book is about hope, getting it in gear, and going “e.” (E-patients are “empowered, engaged, equipped, enabled, and educated.”)
I’m committed to a world where healthcare works better – and not just for patients but for the people whose work is to deliver care. I agree with the words of Warner Slack MD, who said patients are “the most under-utilized resource” in health IT, and I think it applies to all of healthcare.
Healthcare today has unprecedented challenges. Let patients help (which a year later became my TED Talk, then my next major book).
Cross-posted from e-patients.net
The Quantified Self (aka “QS”) is an informal San Francisco based group of people who are tracking one thing or another about their lives. (Could it exist anywhere else??) They have occasional “Show&Tell” meet-ups, with elbow-rubbing and a series of quick talks, 10-15 minutes each.
A few weeks ago I was in town for a talk at the northern California chapter of HIMSS on personal health records. Matthew Holt of Health 2.0 and The Health Care Blog told me QS was meeting that Monday, at the headquarters of Wired magazine.
I registered, and at the end it asked “You wanna present?” I never say no to that, though I didn’t know what I’d talk about.
Turns out host Gary Isaac Wolf was really interested in the little spreadsheet where I’d tracked my tumor sizes as my treatment progressed. :–) So in the context of “quantified self,” my topic became “the quantified patient.”
This is an informal production – audio from a camcorder (no mic) blended with my slides and a few other images. It was fun: a responsive, engaged audience. Thanks to the QS gang for the opportunity.
Related notes –
I was humbled and honored today that my primary physician Dr. Danny Sands and I are on this year’s list of 20 People Who Make Healthcare Better, an annual feature of HealthLeaders magazine.
This is validation that patient engagement – participatory medicine – is an idea whose time has come.
I’m a spokesman for the movement (and yes it’s now a movement), but I’ve been at it less than two years. I want to acknowledge some of the pioneers who paved the way.
First, of course, is Dr. Sands. As the article says, “Sands is a huge advocate of using technology to improve the patient experience.” And he’s good at it: I know firsthand that he provides clear, empowering, gentle yet firm guidance.
Second is the terrific group of pioneers, analysts and visionaries at e-patients.net, who authored “E-Patients: How They Can Help Us Heal Healthcare,” aka the e-patient white paper. The one with the greatest personal impact on my case was of course Gilles Frydman, founder of ACOR.org, the patient network where I found the best information on the internet about my disease.
Less widely discussed are the clinicians who managed my case: oncologist Dr. David McDermott, surgeon/urologist Dr. Andrew Wagner, orthopedist Dr. Megan Anderson, and nurse practitioners and nurses (alphabetically) Kendra Bradley, Gretchen Chambers, Meghan French, MeeYoung Lee and Virginia Seery. Every last one of them fully supported my avid desire to participate.
The article cites one example of how Dr. McDermott encouraged my questions. When your life is on the line, that’s a wonderful thing – and since he’s at the top of his craft worldwide, it proves that brilliance is compatible with empowerment.
Finally, there’s Paul Levy, CEO of the medical center. When I approached Paul in 2003 looking for a doctor, he said “You’ll probably like this guy” and referred me to Dr. Sands. I guess he was right. (Paul was in the “20” in 2007.)
I want to set the record straight on one point. These days Dr. Sands is sometimes introduced at conferences as “e-Patient Dave’s doctor.” People forget (as we used to tell Mom), “He started it.” For instance, although some docs today still don’t do email, at right is the “back of a business card” set of guidelines Danny published – ten years ago.
(If your doc doesn’t do email, be empowered: click to enlarge, print, and take it in. The voice of the patient (you!) can change things.)
This year e-patients.net incorporated as the Society for Participatory Medicine, whose principal activity has been the new Journal of Participatory Medicine, which launched in October. The editors are soliciting articles and essays. If you’ve been doing participatory things, you can fortify the industry’s knowledge by sharing your experiences. Please write to editors at jopm dot org.
The lead of the HealthLeaders article captures what inspires me about this work:
The very essence of healthcare is to make a difference for good. At its core, this is an industry focused on making life better for people. That simplicity of mission establishes a shared grounding for the millions who work daily to deliver the best healthcare they can.
It’s a true privilege to be part of this group. Thanks to all – and congratulations to all the others on the list.
_______________________
Update December 18:
Here’s an informal, off-the-cuff conversation Dr. Sands and I recorded just after we delivered the Medical Grand Rounds interview on December 3 at Beth Israel Deaconess Medical Center.
I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.
A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care. The providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.
And, certainly, the decision making.
This requires that patients have access to their medical data. (Whose data is it, anyway?) As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.
In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”
Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)
Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.
There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.
My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.
So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!
It’ll take time. Let’s get to work.
—Addition 9/22/09:
I do this with some trepidation, because the slides are not the talk, they’re just the visual aids. But so many people have asked, I’m posting just the slides.
I also haven’t taken the time to touch up the animations and slide-to-slide transitions; if a slide doesn’t change after 5 seconds, click or right-arrow. (Some of the animations are subtle, e.g. the bursts that show where my metastases were.)
I hereby hang out my shingle: e-Patient Dave for hire. Call me.
I’m launching my consulting business in the new world of healthcare, especially patient engagement, personal health records, data quality, and related policy. What I do:
Healthcare is changing, especially in America. As the nation wrestles with the complex political and financial issues that paralyze talk of reform, a separate front advances steadily: patients are becoming engaged in their care.
Gone are the days when patients were passive recipients of care dispensed by healthcare providers in a one-sided “doctor knows best – and patients know nothing” model. Today engaged patients participate in their care, in an empowering partnership with nurses, physicians, staff and organizations who understand the new model.
It’s not that “doctor knows best” has turned into “patients know best.” To the contrary – this new relationship is a collaborative partnership, in which both parties feel more fulfilled.
But adjusting to this can be a challenge. How can providers, policymakers, care system creators and patients learn to dance to this new music? And health IT will play a vital role, especially patients’ ownership of their own data in personal health records (PHRs). All these are areas where I intend to “make a living by making a difference.”
Browse the site. Bring friends.
“e-Patient Dave” deBronkart is a high-tech marketing executive who has studied technological change (and how people deal with it) for years. In 2007 he succeeded in beating a near-fatal cancer, and has gone on to apply his analysis and communication skills to the new world of participatory medicine.
In 2009 Dave and his primary physician, Dr. Danny Sands, MD MPH, were elected founding co-chairs of the Society for Participatory Medicine.
A passionate spokesman for the cause, he lives, writes, and works in Nashua NH, near Boston’s Route 128 high tech corridor, where he is Director of Marketing Analytics for TimeTrade Appointment Systems. For more detail on Dave’s story, see the About page.