"e-Patient Dave visitor from the future"
HEADLINER e-Patient Dave: visitor from the future I Dave deBronkart n January 2007 Dave deBronkart, aka e-Patient patients told deBronkart about drug treatment and Dave, was diagnosed with stage IV kidney cancer Healthcare consultant advised him to get to a specialist hospital. They also that had spread throughout his body and given a steered him to Novartis. 2009– present median survival time of 24 weeks. His story has a “The Novartis site had dry clinical statements— Healthcare consultant happy ending, thanks in large part to deBronkart it’s like saying ‘If you go to a certain neighborhood taking an active role in his treatment. DeBronkart 2006– present in Rome there’s a risk of pick pockets,’” explains Dir., marketing analytics, used the Internet to learn from other patients as TimeTrade Appointment deBronkart. “When you talk to six people who’ve well as from Novartis, which manufacturers the drug Systems been to Rome, you find out what you really need to Proleukin. Now pharma’s learning from him. know. There’s so much value in a patient community 1989–2006 “After the shock, you’re left with the question consultant, graphic arts technol- that pharma cannot legally deliver. Let patients talk of what do I do,” says deBronkart. “I Googled like ogy, senior analyst for PODi to each other. Within the patient community, there crazy and found every source online I could and did are immensely powerful currents of knowledge and everything in my power to help myself. The patient information. To try to stop this would be like try- community was the best source of accurate informa- ing to hold back the tide. If medical marketers are tion about treatments. There are legitimate reasons blind to it, they’re at a major disadvantage. But if for this. Encyclopedia-style sites and pharma sites they know where it’s happening, they can be part have to publish verifiable, generic information that’s of that force.” not germane to any individual.” Jack Barrette, CEO of WEGO Health, says DeBronkart, who turned 60 in February and lives deBronkart represents the future of self-managed in Nashua, NH, built his career on marketing analyt- care. “Companies should look at him as a visitor from ics. He’s now increasingly active on the healthcare the future and figure out how to interact with some- front, running e-patientdave.com, managing the blog one like him who is passionate about his health and e-patients.net, which reaches about 10,000 people extremely comfortable with technology,” explains a month, and consulting and speaking about Barrette. “His skill in beating bushes and asking e-Patients and participatory medicine. The the right questions has made him into an term “e-Patient,” coined by the late Dr. Tom advocate who knows how to reach tens Ferguson, refers to “equipped, enabled, of thousands of people online.” empowered and engaged” patients. Last Creating online tools for patients year, deBronkart and his primary care phy- is a way deBronkart thinks phar- sician Dr. Daniel Z. Sands were elected ma companies can contribute to founding co-chairs of the The Society for patient communities. Participatory Medicine. “Pharma companies would do When deBronkart was diagnosed with well to provide tools that help cancer, Sands directed him to the Asso- patients help themselves,” he says. ciation of Cancer Online Resources “Even if they’re not promoting a (ACOR), a nonprofit social net- product, they can offer it as a ser- work that reaches about 1.5 vice of their company. Then people million peo- who are swimming around in the ple a week. current talking to each other say Through good things about the company ACOR, because it helped them.” other DeBronkart was surprised to cancer learn of the “enormous stress” in the healthcare industry. He sees par- ticipatory medicine, which he defines as “an approach to healthcare that “The point isn’t that requires active involvement by all stake- patients know more holders,” as advantageous to all. than doctors. The “The point isn’t that patients know more than doctors,” he says. “The point point is that patients is that patients can help if they know what PHOTO: KERRIE SAFRAN can help if they know they’re doing. This really is a new dance. There’s knowledge on both sides now, so what they’re doing” each needs to learn new steps.” —Tanya Lewis 32 MM&M x MARCH 2010 x mmm-online.com