Dave deBronkart, universally known as @ePatientDave, joined me at Stanford’s MedX conference to talk about the critical role empowered patients can play in clinical care as well as medical education. He told me the “e” in ePatient stands for
- etc. etc!
When I said, “Wow! That is a whole lot more ‘e’s’ than I thought,” Dave said, “Yeah, and the list is growing.” Since he is an expert in e-patientship, I made a mental note to check in with him again in a few months to see what other e’s have been added. But, I digress….
Becoming an e-Patient
Dave was diagnosed with stage 4 kidney cancer in January 2007. It was widely metastatic and his prognosis was poor with a statistical median survival of about 24 weeks. He wondered what he could do to help himself. He says he “googled his butt off,” going to every website that he could find.
His doctor referred him to acor.org, an online cancer patient community. Within hours, people in the community, who were facing similar issues, told him who the best doctors for his condition were and what was the best treatment. He learned that high-dose interleukin 2 was the best treatment for advanced kidney cancer; and when it was, in fact, recommended to him by his doctor, he was prepared.
In order to understand how he was responding, Dave started tracking the size of his tumors. He was elated when his charts confirmed that his tumors were shrinking. Ultimately, he had a complete response and is currently cancer-free. You can hear Dave describe his cancer journey here.
The patient as professor
Since his diagnosis, Dave has become the face of the empowered patient movement—traveling the country, telling his story, and inspiring others to become e-patients as well. But his role has gone beyond educating patients, he is also educating clinicians on the powerful role engaged patients can play in their own care and outcomes.
He recently served as a Visiting Professor at the Mayo Clinic. I asked him during the interview what patients have to do with medical education. He responded, “Thomas Kuhn’s book, ‘The Structure of Scientific Revolutions‘ spells out how you can tell that a science is falling and needs to rethink itself…The paradigm of how medicine gets done is flawed and is no longer sufficient for helping the science of medicine progress.”
This is, in part, because of changes in the way we can now access information:
“The fundamental change that has happened in the last generation is that the internet has made it possible—not guaranteed and not necessarily even easy—but possible for patients to have their hands on all kinds of useful information. And, at the same time, we are increasingly discovering that there are big flaws in the medical literature. So, the whole idea that the trained clinician knows what is in the literature, nobody else does, and nothing else is reliable is damned now. I mean three major journal editors in the last five years have said that half of what’s in the medical literature is simply wrong.
Dave went on to describe the work of a British physician, Ben Goldacre, who has an initiative called AllTrials.net that calls for “all past and present clinical trials to be registered and their full methods and summary results reported.” Dave says Dr. Goldacre says that the results of something like a third of all clinical trials are never reported. He considers it the cancer at the core of evidence-based medicine.
The role of physicians
Dave is not anti-physician. In fact, he says that nothing about what he is advocating for diminishes the role of the physicians:
“I’m all about partnership with my physicians. It actually harms physician’s authority if he or she doesn’t know that the literature has a lot of bogus stuff in it and the patient, from interacting with a smart patient community, does know that.”
Dave thinks that one of the big cultural shifts we need is for “patients and clinicians in partnership to deal with the fact that we are all operating in uncertainty.” We are, he says, “taking our best guess and [then moving] forward together to do our best in light of that.”
He says that it would be good if there were more cultural acceptance by physicians and patients of the fact that nobody is perfect. We also need to be “more open about the fact that, in most difficult cases, we don’t know what is actually wrong in the body.” He also thinks we need to change the payment structure so that doctors get paid to spend time with patients. Now there’s a concept!