"It is completely unlikely that I would be lecturing at the freaking Mayo Clinic."
That's how Dave deBronkart opened his keynote address at the Mayo Clinic's 2011 Social Media Summit. I instantly took a liking to him.
His presence was unlikely because Dave's background is in high-tech marketing. But he found himself suddenly neck-deep in the health care field when, in 2007, he went to the doctor for a sore shoulder—and was diagnosed with Stage IV, Grade 4 renal cell carcinoma. It had metastasized into his lungs. And his leg. And his ulna. And his skull. And his tongue.
"Think about the people who come to your hospital, getting news like this," he said. "It changes your life. It changes how you think about everything."
He went straight home and looked up his condition online. After all, as he said, "When somebody is dying, you just try telling them to stay off the Internet." Page after page of search results essentially told him he was going to die. His median survival was 24 weeks after diagnosis.
"I thought, 'What's the weather going to be like on the day I draw my last breath? What's my mom's face going to look like on the day that she buries me?' This is what patients and families go through."
He asked his daughter and her boyfriend not to get married prematurely just for his sake.
His first symptoms started six weeks after diagnosis, when a sore knee turned out to be a giant metastasis in his femur. Three months later he fainted, and the tumor in his leg caused his femur to snap.
After the shock of the diagnosis wore off, he got busy. His doctor helped, suggesting that he check out a patient community, the Association of Cancer Online Resources (ACOR). Not two hours after he posted his first message, he had received four very important pieces of information from other patients:
- This is a rare disease, so find a hospital that knows what to do.
- It's incurable, but HDIL-2 (high-dosage interleuken) might work. Usually doesn't, but might.
- Don't let them treat you with anything else first, or it won't work as well.
- Here are four doctors near you who do this treatment.
And one of those doctors happened to be the oncologist he was already about to start seeing.
He started a CaringBridge site for friends and family, and he started tracking his progress. The patient community provided 17 first-hand accounts of the treatment's side effects, which his oncologist says prepared him well for when they hit. Surgery to remove his kidney and adrenal gland lasted five and a half hours. Nine months after his diagnosis, they told him, "Looks like you beat it!"
"Some people say my attitude is why I beat the cancer. I asked my oncologist and he said he has no doubt that interleuken killed the tumors, but he said, 'I don't know if you could have tolerated enough to do the job if you weren't so prepared to see it through.'"
Nearly a year after discovering the cancer, he started a blog about his experience. A few months later, he learned about the e-patient movement and re-branded the blog "The New Life of e-Patient Dave." His new mission was to help both patients and providers come together, share knowledge and improve health care for everyone. In 2009, he and his doctor were elected to be co-chairs of the newly formed Society for Participatory Medicine.
Or as Dave puts it, "In two years, I went from being almost dead to being co-chair of a medical society."
I spoke with Dave on the phone recently. "Thirty years ago, pre-internet, almost all useful information in health care was only available to people inside the fortress walls. That is no longer true," he said. "Doctors have the same information exposure that everyone else does. PubMed reports a million new publications every year. It is no failure these days [if the patient learns something the doctor hasn't seen yet]. Patients, if they're suitably informed and become savvy, can be capable partners."
Six years after he discovered his cure, Dave says that most patients with his cancer still don't know about it.
"There's work to be done," Dave said. "We need to educate each other, share perspectives, and to some extent, we need to change the culture."
If you have ever felt powerless, if you have ever wished you could do more for your patients or those you love, or if you just want to see a riveting story, check out Dave's TEDX talk. He's written several books, the newest of which is called Let Patients Help!
- If you see patients, what tools are they using to empower themselves and improve their health care?
- As a patient yourself, how has the Internet changed how you approach your and your family's health?
- In your opinion, how can patients and providers become better partners?
- Dave has a question for you: The most common challenge providers report when they try to encourage patients to use the web is the need to filter the good results from the bad. In your view, what level of medical training is required to help patients improve their search skills: a formal degree (which one)? A skilled patient peer? Something else?
- Contact me at firstname.lastname@example.org or on Twitter @susannafrench.
- Explore all of our social media at d-h.org/social.
Susanna French is Dartmouth-Hitchcock's social media specialist. She thanks her mother for teaching her how to be an empowered patient. Thanks, Mom. I love you.
About The Feed
The Feed is my regular column for employees of the Dartmouth-Hitchcock health system about how the synthesis of health care and social media affects all of us—employees, patients and the community—for the better.