Early in 2007 “e-Patient Dave” deBronkart left his doctor’s office and went home to Google his condition again. He knew he had stage IV kidney cancer, and he knew his doctors would do everything they could – but he wanted to know his odds of survival, to assess how urgent it was. On site after site he read “Prognosis is grim.” “Outlook is bleak.” “Most cases are incurable.” Finally a site let him score his symptoms, and he read: Median survival 5.5 months. Just 24 weeks to live.
But he thought, “I am not done with this life.” And he got it in gear, using attitude and the internet in every way possible. Three years later he’s completely well, and has become co-chairman of a new medical society.
Looking back he sees this as two stories. The first is how, through the help of family, friends and a talented medical team, he beat cancer. The second is how his path fits into the future of healthcare: Participatory Medicine. Here’s his story, reconstructed from a phone interview this spring.
My diagnosis came out of nowhere. In retrospect we saw that I had symptoms, but they were innocuous: I’d been getting tired in the evening; my dieting hadn’t been sincere enough to earn my slow weight loss; nothing made me suspect what was to come. I went in for a routine shoulder X-ray, and the next day the doctors called to say “There’s something in your lung”: it was a golf-ball-sized tumor, near the shoulder, discovered totally by coincidence.
That lucky x-ray saved my life, because I was almost dead and didn’t know it.
A complete workup revealed that I had stage four kidney cancer, with multiple tumors in both lungs. A month later my knee began to hurt. It couldn’t be an old sports injury, because I never played sports; x-rays revealed that it was a big hole in the femur – a giant metastasis that had eaten away so much bone that a dozen weeks later it snapped. Hurried radiation treatments had already killed that metastasis, but the damage was done: one morning I fainted and fell, and when I came to, my femur was V-shaped.
Two surgeries to repair it with steel were difficult but succeeded: I have a fully functioning leg with what my orthopedist describes as “gobs of new bone growth” wrapping around the steel.
Meanwhile that March an extraordinary laparoscopic surgeon removed the cancerous kidney (it had tumors growing out of it in front and in back) and my adrenal gland. Laparoscopy was important (instead of the painful “open surgery”) because I had to recover fast so I could start High Dosage Interleukin-2 (HDIL-2). It’s a potent, sometimes lethal treatment that usually doesn’t work, but for kidney cancer it’s the only thing that resembles a cure, and for me it worked. Amazingly, six months after diagnosis the treatment ended, and I’ve gotten better continuously since.
Here’s where the story stops being about just me and my cancer, and shifts to how patients today are starting to be empowered and engaged in their care. These new “e-patients” are empowered, engaged, equipped and enabled – the polar opposite of being a passive recipient of care. That’s me, though I’d never heard the term. And my active approach to my cancer was not the first time I’d been engaged.
A few years earlier, I’d had a primary physician who was great but all the other staff at that hospital seemed to have a shoulder-shrugging “There’s nothing I can do” attitude about everything – even the confusing announcement on their answering machine. I thought, “If they can’t fix an answering machine, what are the odds they’ll do everything possible for me if I get sick?”
I moved to Beth Israel Deaconess Medical Center (BIDMC), where I read in the news that new management was instilling an empowered can-do employee culture. I loved it: my new physician there, Dr. Danny Sands, was one of the pioneers of online doctor-patient collaboration. In 1998 he’d published the first journal article ever about how to do doctor-patient email, and in 2000 he’d been co-creator of the hospital’s “patient portal,” PatientSite, where I could look at parts of my medical record, request appointments online, etc.
To me all of that was just sensible use of computers, like we’d expect in any other industry. Most hospitals aren’t that modern, but to me it wasn’t remarkable. What was remarkable, though, was that immediately upon diagnosis my doctor recommended an online patient community, ACOR.org.
Think about that: I had been Googling, responsibly and carefully, for what I considered good reliable medical websites, and my doctor suggested that I also consult patients who have the same disease. That is so opposite to the warnings we often hear not to use non-physician websites.
ACOR is nothing fancy. No pretty graphics, no sleek branding, not even a site search within the site: it’s just a text-only email listserv. You can’t even do boldface in your emails or send attachments. But to a technogeek like me, that was a revelation. Because in that patient community, I found the best, most up-to-date and action-worthy advice about treatment options anywhere.
Let me repeat that.
It was the best information I could find anywhere.
Conventional wisdom says if you want the best information, go through respected established institutions. For most people that’s their local hospital, and throughout history that was the surest place to find the latest information. But that’s no longer a sure thing: hospital people may have great training and a ton of experience, but they too have been affected by the information explosion. It’s hard for anyone to keep up, especially since they’re under constant pressure to reduce costs.
The internet means patients can help.
That’s one aspect of a new movement called Participatory Medicine, in which networked patients shift from being mere passengers to being responsible drivers of their health, and their physicians encourage and value them as full partners.
Example: Donald Lindberg, director of the National Library of Medicine (NLM), said years ago, “If I read two medical journal articles every night, by the end of the year I’d be 400 years behind.” This spring when I spoke at the NLM I asked him if it’s still true, and he said “It’s worse.”
To compound matters, providers have no reimbursement billing code for doing research. To a primary care physician or hospitalist each new patient may bring a condition where new information has appeared in the flood of academic journals. The average primary physician in the US has 2,000 patients – imagine how much time the physician would have to spend searching the literature, especially when a less common condition like kidney cancer strikes.
A patient community, on the other hand, has just one area to research. And they can be very motivated.
Motivation is a big factor in why participatory medicine is going to change healthcare. Examining my own attitudes I’ve noticed that I’ve always been the Consumer Reports sort who wants to know the most I can about my situation. I research products before I purchase. But I usually stop at pre-sale research: I don’t want to know how to fix things (except my PC). For my car I just go to the mechanic and say “Fix it.” If it stops working, life goes on.
Not so with my body.
In a sense Participatory Medicine is about harnessing the interests, aptitudes and efforts of a class of people who are realizing (metaphorically) that their cars are killing them – or might, if they don’t take better care.
It’s not about overthrowing physicians; hardly: I wouldn’t have survived without an extremely talented medical team. But here’s the thing: this super-talented team was fully empowering to me: in one email, my oncologist, one of the best in the world for my disease, said “I am happy to field your questions.”
We have work to do to learn participatory medicine. There’s junk on the Web – how do clinicians teach patients to Google wisely? And to find things Google doesn’t? How do patients learn to connect with each other? There aren’t enough groups today: ACOR doesn’t have a group for every cancer, and it doesn’t have anything for non-cancer diseases. I envision a world with a smart community for every condition. It will take time to get there.
And that’s the work of the Society for Participatory Medicine: to figure out what needs to get done, advocate, and start getting it done. I speak, blog and consult with healthcare leaders, industry, government and the Society for Participatory Medicine because I can clearly see this new world of healthcare, in which patients are more responsible for themselves, care providers see patients as potent new partners, and everyone involved gets better results with less effort. That’s the promise of participatory medicine, and it’s something worth living for.
ePatient Dave Bio:
I work in software marketing (I love data and writing) for TimeTrade appointment systems, I’ve worked decades in graphic arts (I love fonts), I have fabulous powerful friends from throughout my life (I love them), I sing in a championship men’s chorus. I have a fabulous family and I’m a great fan of Landmark‘s personal transformation courses.
All of these (except the fonts) combined in 2007 to play a role in beating cancer – stage IV, grade 4 renal cell carcinoma. I have a new life, and this blog will be about how I’m living it to the fullest.
• Author on the e-Patient Scholars Working Group blog
• Healthcare Advisory Board, Mass. Tech Leaders Council
• Presenter at Connected Health 2008: “Illness in the age of e”
• Keynote at Medical Records Institute’s 25th annual TEPR+ conference, January 2009
• Patient Advisor, PCPCC.net
• Guest lecturer at Tufts University School of Medicine, 2008
• 2008 Appy Award for Marketing Excellence, Salesforce.com
