Dave deBronkart, better known as "e-patient Dave," and Dr. Danny Sands, of Beth Israel Deaconess Medical Center, are co-founders of the Society for Participatory Medicine and appear here on Radio Boston. This post, like their relationship, is a collaborative conversation between them:
11 years ago, out of nowhere, I learned that I was almost dead with Stage IV kidney cancer.
I didn’t even feel sick. It’s a slow-moving, sneaky, deadly killer. I just got a routine X-ray for a stiff shoulder and, totally by coincidence, it showed a shadow in my lung near that shoulder. It turned out to be one of many kidney cancer tumors that had spread all through my body, from thigh bone to skull, and eventually even into my mouth. I had a kidney cancer tumor growing out of my tongue.
What do you do in a situation like that?? Luckily, my hospital — Beth Israel Deaconess — is one of the world's best for this disease. But still, my odds were terrible: The best available data said my median expected survival was 24 weeks.
24 weeks! What do you do in a situation like that?
Importantly, my primary physician, Dr. Danny Sands, is one of the original visionaries of the e-patient movement ("empowered, engaged, educated, enabled") and he recommended an online community he knew where I could find smart patients.
This wasn’t to replace my oncologists. It was to connect with other people in my boat, to learn from their shared experience. I learned that there was only one drug that might save me, and it usually doesn’t work, but its side effects sometimes kill people. And from those other patients, I learned how to cope with the side effects.
Today, my oncologist, Dr David McDermott, says (in the BMJ) “You were really sick, and I’m not sure you could have tolerated enough medicine if you hadn’t been so prepared.”
He was talking about the side effects — because there was nothing in the medical literature about how to cope with them, but my smart patient community did know. (I checked everything with him, and he said they were right).
Our health care system is not working as well as it should for patients and clinicians, nor for the government, employers, and insurance plans that pay for it. Patients are frustrated, physician burnout is leading to early retirements and 400 suicides a year in the U.S. alone, and none of us is getting the outcomes we deserve.
We can do better by taking better advantage of technology, combined with the sociological change of viewing health care as a partnership rather than a one-sided chore. Patients and clinicians should be partners.
Even in medical school, I was a fan of how computers could improve health care, but when I started to practice I realized that technology can be a tremendous tool for patients too, and could even connect us.
My mentors included Warner Slack, who wrote, in 1978, that “the largest and least utilized resource is the patient” and Tom Delbanco, who was part of the group that adopted the slogan “Nothing about me without me” and later went on to lead the OpenNotes initiative, through which patients can actually read their doctors’ notes about them in the computer. The more patients know, the more they can help, right? Why exclude them?
This work landed me in the company of “Doc Tom” Ferguson, who collected a bunch of counter-cultural people doing patient-centered work outside the medical mainstream. In Dave’s 2007 cancer, he exemplified what we’d been calling “e-patients,” and in 2008 I invited him to join us. A year later, 13 of us made it formal, creating the Society for Participatory Medicine.
As always with social change, not everyone is ready for it, but some are on the frontier. Dave’s the frontier type: he had been referred to me years earlier when he was shopping for a more modern health-care experience. We shared my vision of health care as a technology-enabled collaboration between the patient and their physician. So when we found out he had Stage IV cancer, it was the perfect laboratory to try out some of the technologies and behaviors I had been promoting. And boy, did it work.
You can tell if there’s something to a new idea, because it grows and expands. Today, the leading thinkers in health care worldwide have flipped to our perspective.
The most recent example is the wonderful OpenNotes movement we mentioned above, through which 20 million US adults have access to what their doctors write to each other in the computer. (Dave: Yes, I can read all their medical mumbo-jumbo. Did you know most medical records contain mistakes? And we have a legal right to get them fixed.) Also:
• We have patient voices assisting the editors of the BMJ -- patients with no scientific training, opining from the patient’s perspective.
• Patient voices are influencing drug development
• And we have increasing evidence that health care works better when patients are informed and “woke” about their new roles, including their responsibilities.
When I first started writing about email with patients in the mid-'90s, very few physicians were doing it. Today most practices have it, but many of these “patient portals” have a terrible user experience, limited functionality and generally do not connect across multiple practices.
Many physicians still grumble about all these patients who want to talk — not to mention those who act like Dave and consult “Dr. Google.” So we have work to do on the health care professional side, as well.
After eight years, our Society for Participatory Medicine has matured. Here’s how we describe it:
Participatory Medicine is a movement in which activated empowered patients engage as drivers of their health, and in which providers encourage and collaborate with them as full partners in their care.
Our Journal of Participatory Medicine was recently adopted into the prestigious JMIR family, we have a vibrant online member community. In October we held our first live conference, attached to the high-profile Connected Health Conference.
We're seeking to transform the culture of patient care — yet as always with social change, sometimes the empire strikes back. In Belgium if you Google a symptom, the government pays for an ad saying “Don’t Google it - trust a professional.”
Who says you can’t Google it and trust a professional? That’s what participatory medicine is about: Each of us contributing to the best of our potential.
An increasing body of evidence shows that participatory medicine yields improved outcomes, and a recent paper showed that “activated” patients do better and have lower costs, too.
Ultimately, participatory medicine offers a cultural shift, improving the experience for all. It's a social revolution, not unlike feminism. As always, some people on both sides — patients and doctors — won't like it, but many of us see it as the emerging future.
Readers, reactions? Questions?