Just three years ago, my friend Dave deBronkart’s life changed with a routine x-ray that showed a troubling shadow on his lung, which turned out to be the result of a metastaszied stage IV, grade 4 renal cell carcinoma. Prognosis for long-term survival was dismal, statistically: median projected survival time was 24 months.
Dave, an online maven and communicator who consumes and shares information and builds his knowledge base with real intensity, immediately looked online for information about his disease. He joined the Association of Cancer Online Resources (ACOR), and started an online journal at CaringBridge.
I met Dave through colleagues in the e-Patients Working Group that the late Dr. Tom Ferguson formed, a group that became founders of the Society for Participatory Medicine. Participatory medicine emphasizes the active role of the patient in the process of medical treatment. This is more possible because of the Internet and the emerging, evolving abundance of information and information channels. Before, a patient’s exposure to healthcare knowledge was mostly at physician or hospital touchpoints that were inherently limited in duration. There was no great way for patients to study their conditions and find others with the same or similar conditions, getting similar treatments. If you did find and meet one or two others with the same condition, there usually wasn’t a facility for comparing notes and data. With the Internet, that’s all changed. (Tom Ferguson saw this coming in the early 90s, which is when he and I met and started talking).
I could write much more about participatory medicine and the concept of the e-patient, but I wanted to say more about Dave. Wendy White at Sirensong posts about a recent study of empowered patients. A key finding: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”
The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”
This definitely sounds like ePatient Dave, and reading it made me think of another Dave characteristic: When he found out he had stage IV cancer, Dave didn’t let it define him. He didn’t become a person who was dying, any more than anyone else. He was still Dave, confronted by a challenge, and intent on finding his way through it.
I remarked a couple of days ago that a disease seems to become terminal when it’s discovered. I might have meant that contact with the healthcare system and its treatments can kill you faster than some disease, and I think I’ve seen that before, with my father, who had colon cancer and would have could have lived well and longer had he not agreed to surgery. (That’s 20-20 hindsight, but it’s accurate.)
But I also suspect that we can think ourselves to death. I’ve come to believe that our internal conversations set a path, drag or nudge us in a particular direction. If you want to live longer, it’s probably best not to spend too much time thinking you’re dying (though we all are, of course, at least evidence suggests that’s the case.)
I’m pondering all this as I plan what I’m going to say when I speak to a patient advocacy group a week or so from now. I’m talking about patients and social media, how our web conversations and access to information are transforming medicine, changing what it means to be a patient. I think we’ll see more patients like Dave deBronkart, jumping into their treatment with both feet, learning everything they can about their conditions, finding or building communities of support and hope. This is the real “healthcare reform,” I think.