e-Patient Dave: visitor from the future by ProQuest


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        e-Patient Dave: visitor from the future
             n January 2007 Dave deBronkart, aka e-Patient      Dave deBronkart                   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
            “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
           azy                                                                                    are immensely powerful currents of knowledge and
        everything in my power to help myself. The patient
          verything                                                                               information. To try to stop this would be like try-
        community was the best source of accurate informa-
         ommunity                                                                                 ing to hold back the tide. If medical marketers are
        tion about treatments. There are legitimate reasons
          on                                                                                      blind to it, they’re at a major disad disadvantage. But if
        for this. Encyclopedia-style sites and pharma sites
            r                                                                                     they know where it’s happening, t           they can be part
        have to publish verifiable, generic information that’s
          ave                                                                                     of that force.”
        not germane to any individual.”
          ot                                                                                         Jack Barrette, CEO of WEGO Health, says
            DeBronkart, who turned 60 in February and lives                                                                                    of
                                                                                                  deBronkart represents the future o 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
           s.                                                                                     the future and figure out how to interact with some-
        front, running e-patientdave.com, managing the blog
          ont,                                                                                    one like him who is passionate about his health and
        e-patients.net, which reaches about 10,000 people
           patients.net,                                                                           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
           Patients                                                                                           the right questions has made him into an
        term “e-Patient,” coined by the late Dr. Tom
           rm                                                                                                                                how
                                                                                                                   advocate who knows h to reach tens
        Ferguson, refers to “equipped, enabled,
          erguson,                                                                                                    of thousands of peo  people online.”
        empowered and engaged” patients. Last
          mpowered                                                                                                         Creating online tools for patients
        year, deBronkart and his primary care phy-
          ear,                                                                                                           is a way deBronkart thinks phar-
        sician Dr. Daniel Z. Sands were elected
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