I had the privilege of talking with Dave deBronkart, author, blogger and leader in the participatory patient, or e-patient movement. Dave, better known as e-Patient Dave, was diagnosed in January 2007 with Stage IV, kidney cancer. The medium survival time for patients with his diagnosis is 24 weeks. With the help of online cancer communities, his own research and the medical team at Boston’s Beth Israel Deaconess Medical Center, Dave survived. He went on to write a book about his experience. Dave is now an international speaker for the e-patient movement and a founding co-chair of the Society for Participatory Medicine. I asked Dave what he sees on the horizon for the e-patient movement.
“At first, we (the Society for Participatory Medicine) were just raising awareness about the e-patient movement. Now people want to know how, specifically to help it. Doctors ask me “O.K. this is good, now where do we start?”
Dave sees a huge benefit in the development of medical self-tracking devises. The most common example is the pedometer, that little device people wear to tracks the number of steps they take. It has become a popular tool in encouraging sedative folks to get active.
DeBronkart says “if we (patients) can collect information in a more reliable way that can be very helpful.” Other examples are glucose monitoring devices for diabetics, a phone app that you point at your finger to read your pulse and the ZEO sleep monitor, which records the wearer’s sleep patterns. The next step, according to Dave is a simple website that will pull all this information together to give you a comprehensive overview of your personal health data.
Bluetooth bathroom scales by WiThing are probably the closest to what Dave envisions. Users can scan the scale with their Bluetooth and information goes to a website and in some cases to their doctors office. Some doctors have software that will alert them if a patient with a heart condition has gained weight or their blood pressure is up.
I asked Dave about the role HIPAA plays in slowing the progress of utilizing such medical information. He likened it to the success of travel sites like Orbitz and Travelocity. “Their existence is based on the information in the airlines’s computer being available for the other sites to get at it.” That flow of information is what empowers the consumer to be informed of their best travel options. So far, it is much easier to find your best hotel choices than your own medical information.
“One of the huge obstacle we face is a widespread misunderstanding of what HIPAA says and doesn’t say.
What we need is sufficient security to mitigate harm from misuse of information without inhibiting innovation. More harm will come from inhibiting innovation than any individual breaches of security. . . . The current regulations were published twelve years ago, at the time nobody imagined a cell phone would be a medical devise.”
Another area where Dave sees a need for development is the curating of the medical information that is on the web.
“One thing we don’t have that I want is a smart patient community, so every physician can confidently say “go here”. We have them for specific diseases but, for example, I learned in January I have basil cell carcinoma. I tried to find a patient community where I could learn about my treatment options and costs. I have two options with varying levels of invasiveness and expense. I’d like to hear from people who’ve had them done, like consumer reports, but I cannot find anything resembling a good community.”
Dave also strongly believes patient education needs to be a big part of the future of participatory medicine. Medical personnel training people to be competent in finding information on their own. Teaching patients who are looking for information how to separate the “Gold from the Garbage.”
” . . . We’d like to create a banner of participatory medicine, have it hanging in doctors offices with the hall marks of participatory medicine – I will give my patient useful information – I will give the patient access to their medical records etc. . . and on the flip side there would be a patient promise – I will understand, as best I can my disease – I will keep track of the things my clinician asks me to track. . . . We need to develop and improve the relationships between patients who want to be active participants in their healthcare and skilled clinicians.”