The American Society of Clinical Oncology (ASCO) annual meeting is upon us, and – more than ever – it promises to be a highly social (as in social media) event for doctors, caregivers, industry and patients.
Actually, let’s make that e-patients.
E-patients are at the center of an important and growing movement in which patients are connecting online with fellow patients to become more informed and more involved in their health care.
To highlight the role of e-patients we had the opportunity to ask questions of perhaps the best known e-patient – Dave deBronkart, whose story has been told around the world, including in a TED Talk, the Boston Globe, the BMJ, TIME, US News, USA Today and several other outlets.
AZ: What is an e-patient?
E-Patient Dave: Tom Ferguson – the founder of e-patients.net – coined the term e-patients to describe patients who are equipped, enabled, empowered and engaged in their health care decisions.
The growing e-patient movement has demonstrated that as the internet brings patients together with information and with each other, a new world of participatory medicine is evolving, in which patients become potent agents in creating and managing their own health, in partnership with physicians.
AZ: How does an e-patient differ from a “regular” patient?
E-Patient Dave: Empowered and engaged patients don’t expect the system to do everything for them – they do everything in their ability to help out.
Too often, health care conversations occur as if patients aren’t even in the room – as if we are talking about a third person. We can’t let that happen. Being an e-patient is about playing a more active role in your health care. The most underused resource in all of health care is the patient – by far. When patients go online and connect with one another, they gain significant insight that adds to what you get at the doctor’s office.
AZ: You used to be Patient Dave. When – and how – did you become e-Patient Dave?
E-Patient Dave: A year after my diagnosis, I was invited by my primary physician, Dr. Danny Sands, to join the annual retreat of the e-Patient Scholars Working Group. Founded by Tom Ferguson, the group consists of pioneers, both medical and lay, who have been quietly altering the balance of power in healthcare.
I immediately saw myself in this group and became an active blogger on e-patients.net, and began educating myself on the issue as much as I could. I went part-time in my day job in 2009, and left industry entirely in 2010 to devote myself full-time to healthcare.
This is the first time in my life I’ve felt I have a calling, something I can’t get away from: It’s what I need to do. I’ve had plenty of fulfilling jobs in a great career, but not a calling. This is it.
AZ: Oncology patients especially are going online to become more involved in their care. You are a perfect example of this. Do you mind sharing your story?
E-Patient Dave: I was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. My median survival time at diagnosis was just 24 weeks. I had tumors in both lungs, several bones, and muscle tissue. My prognosis was “grim,” as one website described it.
Importantly, my primary physician recommended that I join an online patient community. They gave me invaluable perspectives, plus practical advice on treatment options and side effects that today my oncologist says probably helped save my life!
I received great treatment at Boston’s Beth Israel Deaconess Medical Center. My surgeon removed the extensive mess (laparoscopically!), and the biologic therapy program helped me participate in a clinical trial for a powerful but severe treatment. My last treatment was July 23, 2007, and by September it was clear I had beaten the disease.
AZ: Is the e-patient restricted to cancer patients or patients with serious illnesses?
E-Patient Dave: No! Everyone can become an e-patient because everyone interacts with the health care system – both as patients and as caregivers for children, parents and others. The more equipped, enabled, empowered and engaged that patients are, the better they can serve as valuable partners in their care.
AZ: What do patients have to do to become an effective e-patient?
E-Patient Dave: The first thing is to wake up to the fact that it’s your life that’s at stake, and if you want, you have every right to try to add to what your care team is doing. Don’t be passive – think, “I know I don’t have medical training, but how can I help?”
In my book Let Patients Help I list ten things e-patients do and say. #1 on the list is how to introduce yourself and your preferences to a doctor or nurse: “I’m the kind of patient who likes to understand as much as I can. Can I ask some questions?” The rest follows naturally.
AZ: How did you grow your online following and how often do you currently communicate with them?
E-Patient Dave: I’ve been online since 1989. There are two essential things about being social –online or off – that many people find mysterious, but they’re simple. First, listen. You can’t be sociable if you don’t know what’s being discussed, because you can’t know what’s on people’s minds. Second, say something useful. So many people wonder why nobody reacts to what they’re saying online. Well, duh, do you have a clue what they’d be interested in? #1 and #2 are about exactly that. Don’t be a leech and don’t be narcissistic; be useful to the community.
AZ: Several years into your e-patient journey, what are the most important things you have learned – and what is your message for those just starting out?
E-Patient Dave: There may be people out there – and resources – who can help. Within two hours of posting my first message in my patient community, I got facts and practical advice that to this day don’t exist in any journal article or establishment website. But, unfortunately, most diseases don’t have such a good community, and there’s still no reliable listing of good communities for all conditions.
The world and what’s possible have changed a ton since most doctors were trained twenty years ago, and most people are just barely waking up to it. Back then all reliable information came through the academic publishing process. That process still works (though e-patients are keenly aware of its limitations), but today reliable information can show up anywhere through the “capillaries” called social media.