“Healthcare is not a spectator sport,” according to “e-Patient Dave” a cancer survivor and fascinating speaker and author. An “e-Patient” is a patient who is empowered, engaged and enabled. When Dave deBronkart was diagnosed with what the doctor thought was terminal kidney cancer, he was determined not to be a passive patient. He collected whatever information he could find online about his condition and possible treatments. He shared it with his online readers and his doctors, consulted parts of his own medical records online and, through his doctor, found a good online patient community where he got invaluable advice and emotional support from his patient peers. Dave narrowly escaped death, saved by a rare treatment, many never hear about, but happily was effective for him. Out of that experience, came a book and a mission in life to empower patients. The old model of the authoritative doctor needs to be replaced by a partnership model. The reality is that there were 800,000 new articles published in medical journals in 2010, so not even your doctor can possibly know everything.
Patients and their families (who are also the caregivers) need to understand a disease or a treatment, and they need to feel free to ask questions. New regulations will make access to our records a reality. Last year in a study called Open Notes involving three leading medical centers, patients were given unrestricted access to their physicians’ actual notes. Not only did 89 percent of the patients love it, they said it would definitely affect what health provider they would choose.
In answer to some experts who say, “Patients don’t understand this stuff,” Dave responds, “It’s perverse to keep people in the dark and then call them ignorant.” Patients and families can also help with quality and safety. They can check the chart and the meds being given, they can request that all who enter the room, wash their hands, and they should inquire about how much things will cost. Dave says there is a magic incantation we should say to all doctors we visit: “I’m the kind of a person who likes to understand as much as I can about my health. Can I ask some questions?” In his book, written with Dr. Danny Sands, Dave’s primary care physician, the authors say there is a wealth of online health information, but we need to learn how to identify good vs. bad websites using guidelines such as MLANET— The Medical Library Association website. (See their MLA User Guide to Finding and Evaluating Health Information on the Web.) Government departments of health also have excellent information. (MedlinePlusgov). Also Kaiser, the Veterans Administration and Mayo Clinic. The book also cautions that although nobody wants to talk about it, medicine can be dangerous. It is risky to cut someone open, and it is risky to put potent chemicals (medicines) in our bodies. In the best hospitals in America, 1 in 20 surgical patients die of a complication. In the worst hospitals, it’s 1 in 6. With this in mind, you might be inclined to ask about other options. Dave feels that people perform better when they are better informed.
He has part of a group that started the Society for Patient Participatory Medicine (http://participatorymedicine.org/), and you can also watch an excellent video of one of Dave’s talks at on.TED.com/Dave. Patient participation should:nImprove outcomesnReduce medical errornIncrease patient satisfactionnImprove cost of care