In 2007, Dave deBronkart went in for a shoulder X-ray and found out he had aggressive, stage IV, grade 4 renal cell carcinoma and was expected to live less than two years. The X-ray had revealed a tumor in his lung—kidney cancer had metastasized to both lungs, several bones, and muscle tissue. “I am someone who was almost certainly going to be dead by now,” deBronkart says.
He attributes his long-term survival to two things. His primary physician, Danny Sands, MD, was a pioneer in the movement to get people to fully participate in their healthcare.
“The second was that as a result of that, I got information that doesn’t exist in the medical literature and that my oncologist believes helped save my life,” says deBronkart.
One example: Through his kidney cancer patient network, deBronkart found out how to deal with side effects of his risky, highly specialized treatment. “I said to my oncologist ‘What do you think?’ This was the patient being a working partner.”
And soon, he had become an e-patient activist. The idea—e-patients are equipped, enabled, empowered, and engaged—came from the late Tom Ferguson, MD, a Yale Medical School graduate and medical editor for the Whole Earth Catalog.
The ‘Car Wash’ Approach to Healthcare
DeBronkart began blogging and speaking about his experience. In his 2013 book Let Patients Help! A Patient Engagement Handbook, he shared the lessons he had learned. Unfortunately, he says, “The traditional model is that the patient is like a car in a car wash. They drive in, the system does things to the patient, and they come out the other side.” What many healthcare providers don’t understand is that they’re failing to take advantage of a valuable resource—the patient.
Patient participation is essential to improvement of the U.S. healthcare system, deBronkart believes: “This is not a movement to say that patients know everything. It’s a movement to say: ‘Just let patients help.’” In his case, connecting with people who had kidney cancer made all the difference. “A good patient community can have lots of information that doesn’t reject the medical literature—it adds to it.”
‘Give Me My Damn Data!’
He has also focused his attention on better access to medical records. This emerged out of his realization “that there was a lot of garbage in my medical records, a lot of just wrong information.” His rallying cry for this fight is: “Give me my damn data. You people can’t be trusted to keep it clean.”
When a lot of people have access to records, such as in hospitals, things can get messy. One of the ways you can help is by checking your medical records to ensure they are accurate.
According to OpenNotes, an international movement working to get medical professionals to share their notes with patients, more than 40 million U.S. adults now have access to their medical data.
“If we find ways that patients can really contribute, then the competence in all of healthcare will increase,” deBronkart says.
His mission continues, with speaking gigs and a new book, Superpatients: Patients who extend science when all other options are gone, coming out in the fall. “Having been saved by the best of medicine,” he asserts, “I wanted to do what I could to improve the future of medicine.