E-patient Dave: 'Let patients help'

Richard Davies (Dave) deBronkart, Jr.

BOSTON—Returning to the Medicine 2.0 Congress for the first time since delivering his first ever keynote address at the event in 2009, “Gimme My Damn Data,” “e-patient” Richard Davies (Dave) deBronkart, Jr., discussed the growing culture change of participatory medicine.

Early in 2009, deBronkart decided to move his medical records to Google Health only to find out just how inaccurate the bulk of them were. All of the conditions he’d ever had, including teenage acne, were listed as current problems and many were listed with false medications.

That experience quickly turned deBronkart into a media sensation: he became a recognized patient advocate involved in initiatives in Washington D.C., and began a robust speaking career.

Since his first experience with inaccurate medical records, deBronkart’s mother moved to rehabilitative care. There was no electronic health information exchange in the area so all of her records had to be transferred manually.  His sister discovered that a hyperthyroid condition was incorrectly recorded as a hypothyroid condition. Fortunately, his sister caught the mistake before anything bad happened.

“The only reason to record information is so someone can read it back later,” deBronkart said. “If the wrong information is in the record, something might go wrong.”

deBronkart himself was diagnosed with metastatic Stage 4 liver cancer in 2007 and his doctor actually recommended that he Google his condition. The information deBronkart uncovered indicated a grim prognosis and a median survival rate of 24 weeks. Despite many physicians’ belief that patients can’t handle the information they might find on the internet, “it’s the right of a desperate person to try to save themselves.” And, he added, when patients want to get engaged in their care, “we should do everything we can to let them do so. News flash: Until people gain experience, they are inexperienced.”

Plus, deBronkart said patients should not assume that their doctor knows everything that might be useful to them. In 2010 alone, 800,000 new papers were indexed in Medline. “There’s no way for clinicians to stay up-to-date on all of the information.” The two to five years it typically takes from the end of a clinical trial to relevant information reaching a clinician’s inbox doesn't help either. “With a median survival time of 24 weeks, that’s a problem.”

Through an online discussion group, deBronkart learned that high-dose interleukin 2 (HDIL-2) was most likely his best treatment option. He also learned that three out of four metastatic liver cancer patients are never told HDIL-2 even exists. Two years after his diagnosis, still, he said, no website listed HDIL-2 as a treatment.

Fortunately for deBronkart, surgery and HDIL-2 worked and he is currently healthy.

His experience shows that the internet makes it possible for new patients to connect to information and to each other. The need, mechanism and infrastructure is largely the same today as it was at the time of his first keynote three years ago but deBronkart said there is more recognition of the problem and awareness that “sometimes the patient brings value.”

Looking ahead to Medicine 3.0 and beyond, deBronkart said, “We’re all going to be swimming in a common soup of information.” He cited research conducted by advocate for the empowered medical consumer, Tom Ferguson, MD, who said that it might be more dangerous for patients not to Google their conditions.

Meanwhile, in contrast to the many clinicians who said patients could not handle their medical records or weren’t interested in them, deBronkart said the Blue Button project has proved the opposite. In the first 10 weeks after the Blue Button went live, 100,000 patients downloaded their data. By summer 2012, one million had done so.

deBronkart cited a blogger, Hugo Campos, who has spoken about how his Fitbit activity monitor, blood pressure monitor and sleep monitor—each worth less than $150—produced reams of data which could easily be transmitted to his physician. His $30,000 implanted cardioverter-defibrillator, however, made no data available to him.

He also cited a blogger who received someone else’s information when she requested her medical images. These kinds of mistakes are unacceptable, he said. “Competent management of IT workflow matters.” Patients should not assume clinicians have software that’s as reliable as that used by any other industry, clinicians shouldn’t assume vendors are selling them reliable software and vendors should grow up, he said.

deBronkart finished by explaining the plight of a woman who was treated for Hodgkins lymphoma back in 1983 with high-dose radiation—standard treatment protocol at the time. She was just diagnosed with breast cancer and her doctors would like to know how much radiation she received back in the 80s. Unfortunately, those records no longer exist and she never received a copy.

Appealing to his audience, deBronkart told them to continue their efforts because they are doing “deeply significant work.” They should, however, “let patients help improve healthcare because this stuff matters.”