I’m an e-patient: empowered, engaged, equipped, enabled. Diagnosed in 2007 with late stage kidney cancer, I used the internet in every way possible to help my cause, in concert with world class physicians at Boston’s Beth Israel Deaconess Medical Center. Today I am well.
A year after my diagnosis I discovered e-patients.net, a blog started by “Doc Tom” Ferguson in 2006. Ferguson authored several BMJ pieces, including “Online patient-helpers and physicians working together: a new partnership for high quality health care.” It sounds like a vision of the future, but it appeared in November 2000 – ten years ago.
Ferguson had advocated since the 1970s that patients should be engaged in their care. He was thrilled when the internet gave patients access to information and to each other, and he coined the term e-patient, defining it with those four “e”s. His work is summarised in a 122 page white paper published posthumously on e-patients.net. I read it, saw myself, and took the online moniker “e-Patient Dave” as I started blogging about it.
A decade after his first BMJ piece, Ferguson’s vision is being realized. E-patient speakers appeared frequently in 2010 at medical conferences, and the Institute for Healthcare Improvement’s Forum this month hosted a patient summit.
In our Salzburg seminar I realised that informed, engaged, thinking patients can be an important force in informed decision making. In my own case, I quickly learned from my kidney cancer patient community (ACOR.org) about my best treatment options: “Only one thing approximates a cure: high dosage interleukin.” “Most hospitals don’t offer it – find one that does. Here are phone numbers of New England doctors who do.” “Don’t let them give you anything else first – it may disqualify you for interleukin.” “The side effects are rough but a specialist hospital knows how to manage them.” Vital information – but most patients never hear about interleukin as a treatment option. They may be offered informed consent (to an option chosen by their physician), but they’re certainly not fully aware of all the available options.
As it happens I was already referred to one of the recommended oncologists, Dr. David McDermott – but as treatment approached, I reached out again to ACOR to prepare, gathering first-hand stories about the side effects. Today my oncologist says “There’s no question the interleukin killed the tumors, but I’m not sure you could have tolerated enough interleukin to make a difference if you weren’t so motivated and hadn’t educated yourself on what to expect.”
It’s my fervent hope that in the coming year, all of us will recognize the reality expressed in the title of our seminar: that patients are the greatest untapped resource – especially in medical decision making.
“e-Patient Dave” deBronkart’s story is documented in his 2010 book, Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it). He now works full time in advocating for and developing the practices of patient engagement through public speaking and research projects. His website is http://epatientdave.com.