If you are a health care provider of any sort you’ve no doubt had patients walk into an appointment with medical information they have found from a Google search. Your experience with those printout toting patients probably shapes your feelings about the participatory patient, sometimes called empowered patient or e-patient, movement. More and more patients are using the internet to take a driver’s seat role in their own medical care. According to the Pew Research Center 59% of U.S. adults look online for health information, hundreds of on-line communities for patients suffering from specific diseases are being formed and WebMD’s network of sites has reached an average of 86.4 million visitors per month.
One of the most well known faces of the e-patient movement is Dave deBronkart or e-patient Dave. Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (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, Laugh, Sing and Eat Like a Pig “How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it).” Dave is now an international speaker for the e-patient movement and a founding co-chair of the Society for Participatory Medicine.
Go to his blog and you will immediately pick up on the passion and energy of Dave and others in the e-patient movement. Many of the patients and clinicians involved are battling chronic or life-threatening diseases. That brings a level of motivation you won’t experience on many other blogs. But amongst the encouraging comments and helpful tips from patients and doctors equipping each other for battle, you also hear frustration. On one side are frustrated patients who, in the midst of their medical struggles have had doctors roll their eyes, ignore their findings and even scold them for seeking outside medical information. On the other hand you have clinicians, already pressured by a system that is increasingly squeezing their time, money and capacity for new information, who feel their medical expertise is being questioned by ill-equipped patients.
I had an opportunity to talk with Dave about the e-patient movement and the role patient-provider relationships play in it. Dave does not see Doctors as the problem with our current medical system. “I love good doctors. Good doctors saved my life.” Rather the system itself with increasing demands on clinicians and the exponential increase of new medical information is creating a climate where patients have to be involved in their own care because doctors simply can’t keep up with it all.
“There are over 6,000 articles a day submitted to The National Library of Medicine. . . . The average primary care physician has 1,500-2,000 patients and all their conditions to keep track of. It’s reasonable to think that one motivated patient, with one condition to keep track of, would find useful information that their clinician has not.”
A common fear amongst doctors is what Dave calls “death by google.” Amongst the plethora of medical information available on the web some is good and some is downright ridiculous. But the fear that patients are causing harm to themselves by finding and following unsafe medical advice is, so far, unfounded. Dave sites two separate groups of medical professionals who set out to find cases of adverse harm coming to patients because of information found on the Internet. Neither group could find any credible examples of such cases. (See the Society of Participatory Medicine’s White Paper p.29 for details.) Compare this to the reports of accidental deaths in US hospitals which the Institute of Medicine has estimated at 44,000 – 98,000 annually, (“I don’t fault Doctors and nurses for that,” says Dave “I blame the system they are working in,”) and one could come to the conclusion that it may be more dangerous NOT to do a Google search.
I asked Dave about instances like the rumors of a link between autism and vaccinations that have been spread and kept alive primarily by the web.
“In the case of the vaccine Wackos, (and you can quote me on that) conventional wisdom says that you should get your information from a credible medical journal and that’s where those rumors originated. The [medical] peer review system failed. Then the media got a hold of it and now we have people like Jenny McCarthy going around saying they won’t get their kids vaccinated.”
Another, more intangible force that seems to cause animosity between e-patients and some clinicians is that many feel threatened by a patient showing up with information they didn’t have. A comment I found on the YouTube video of Dave’s 2011 talk at TEDxMaastricht illustrates this well; “I am a MD and I hate it when patients come into office with their own google research! I didn’t go to medical school to put up with that crap.”
“When we have a case where a patient has seen information that a clinician has not and it’s useful . . . if you come from a world of medical education where all information must come from medical professionals, that seems impossible, or even insulting. . . The world is not ending, but it is changing. Any Doctor who gets his self worth from knowing more than everybody else is not going to be able to keep up. It is not a failure of the Doctor if a patient sees something they haven’t. . . information is now available to everyone, but nothing can replace the trained medical mind to analyze that information.”
Like it or not patients are online looking for medical information and if e-patient Dave has it his way they will soon have unlimited access to their own raw medical data as well. His hope is that physicians see their patients as partners in their medical care, an un-tapped recourse for Healthcare providers.
“My appeal to clinicians is; so many complain about the patient who is lazy or non-compliant, for heaven’s sake when you have a patient who is wanting to be proactive and get informed about what is happening to them, why wouldn’t we encourage that?”