Dear Inspire Community Members,
We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting these interviews in a Q&A format in my Journal as a news feature for Inspire community members.
I spoke recently to Dave deBronkart, a kidney cancer survivor and patient advocate who is known widely as “e-Patient Dave.” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma at a very late stage--his median survival time at diagnosis, in fact, was just 24 weeks. An active participant in his treatment plan, deBronkart used the Internet every way possible to partner with his care team; today he is well.
He described his cancer journey in a book, Laugh, Sing and Eat Like a Pig.
Inspire: You recently gave an interview in which you said you wanted to change the dynamic of measuring patients’ “compliance” or “adherence” to therapy prescribed by doctors, and instead to consider therapy as a shared goal, with the operative term being “achievement.” Can you expand on that point?
deBronkart: As I’ve looked as healthcare for the last couple of years, and after my own illness, it occurred to me that there is an essential flaw at the foundation of how we all think about healthcare. We think about it as something that is done to the patient, or directions given to the patient, and the patient is the unknowing and obedient—or disobedient—recipient of instructions. In reality, I like the perspective of the patient being like the player on the court, and the physician is the coach. If I have a running coach or basketball coach or swimming coach and I don’t do what the coach says, I’m going to have no achievement.
Inspire: In cases like managing a chronic illness, or rehabbing from an injury?
deBronkart: Or exercising, weight control, taking your medications, whatever. Phrasing it in terms like compliance and adherence just is guilt-inducing and doesn’t get anywhere. I myself am far more inspired by the idea of achievement than I am by the idea of not being so disobedient. At the core of what we’re calling participatory medicine is the idea that it’s not like the conventional view that a patient in treatment is like a car in a car wash. It goes through and gets things done to it. I don’t have a nice offsetting metaphor for that, but when you’re participating, it’s a partnership. You just don’t sit there and wait to have things done to you.
Inspire: From a personal perspective, connecting with others on the ACOR online community helped you during your illness and recovery, true?
Inspire: How specifically did that component of reaching out and finding others online help you?
deBronkart: A common benefit of online communities that did not happen to me is finding out about treatment options. In my case, I was already at the best place in the world for my disease, and they were already planning to give me the treatment that the ACOR members recommended. However, what my doctors couldn’t give me was information on how to deal with the treatment, which is very difficult. My particular treatment has side effects up the wazoo, and yet, like all side effects, they vary from person to person, so I wanted to know what to expect. There is no Web site, FDA-approved or anything, that will tell you that. But the people who have been down that road all know what they encountered, and they shared that with me.
Inspire: And the impact of that sharing?
deBronkart: To some physicians, if a side effect doesn’t influence how your cells turn out, it’s irrelevant. Here is where patients shift from not just participating in their care but defining what care should be. Because I want a treatment that is not just going to fix my cells but not make my life miserable. And better yet, if the treatment is going to make my life miserable, I want practical advice on how to deal with it.
Medicine as a profession has partial answers to this. When my leg was in the process of breaking, it was really painful to walk on, so they had crutches or a walker as a way of dealing with it. But when they run out of things like that, that’s where other patients can give you practical advice. And they did.
Now, the interesting question here: What difference did this make? People have said to me, “Dave, your mental attitude was fabulous. That must be what saved your life.” I asked my oncologist, Dr. David McDermott, how much my attitude had to do with my recovery, and he said, “I have no doubt that the interleukin is what killed your tumors. But I don’t know if you could have tolerated enough to do the job if you hadn’t been so proactive about educating yourself about the treatment, so you were prepared to see it through to the other end.”
Inspire: And you were aided with information and support through the online resources you sought.
deBronkart: Yes, and it goes without saying that there’s immense value to discovering that you’re not alone. Immense value.
Inspire: Did that surprise you?
deBronkart: Not really, because I’ve always been a social networking kind of guy. I sometimes say that I learned to be an empowered patient back on the desktop publishing forum on CompuServe in 1989. There I was, struggling with early versions of Quark Xpress, like why doesn’t this feature work, and I’m doing what the instruction manual says, and then I get into this community where people who are struggling with the same issues can help you. The most natural thing in the world for me when I was diagnosed was in addition to going to the best doctors I could find, to get the best community peer group.
Inspire: You’re known as someone with exudes a lot of positive energy. What in your role as a patient advocate frustrates you?
deBronkart: I consider myself part of a movement. We are a movement for social change. It’s not identical to women’s suffrage, the Civil Rights movement, gay rights, feminism, but it’s parallel in some important ways: there is a class of people who could, if the social structure allowed it, have access to a far better life than they currently do, and there are social structures in place that are keeping that from changing. As the change starts to happen, through people awakening and realizing they can speak up and ask for things, some people will ask for things, and some people will start demanding things.
I don’t know if we’ll ever get to the point of people burning buildings down as part of the e-patient movement, but we will increasingly have people say, “Damn it, you guys killed my baby, and that is not OK to be quiet about. Patient safety is important,” or, “Damn it, why didn’t you tell me about interleukin? Why did you put me on some other treatment that will keep me from getting sicker, but will give me no chance at ever getting better?”
What I see now, I wouldn’t say it gets me down, but if you’re in the process of climbing a mountain, and you wake up one morning and the fog has cleared and you see that you have farther to climb than you realized, what I see very clearly now is that we don’t yet have an ecosystem—a network of interacting players—of opportunities for people to get engaged in this game of changing healthcare.
Inspire: How so?
deBronkart: If somebody wants to be a patient activist speaker at conferences, we don’t yet have a patient speakers bureau, where a conference organizer can go and say, “Get me a speaker who talks about diabetes, or what have you,” and so there’s no place for the would-be speaker to go to register.
And we don’t yet have policies in Washington that allow grassroots citizens to get paid for their time participating. I did a speech proposal called, Why America Needs a Patient-in-Chief,” and one of my points was that patients are the only people in the whole health ecosystem who have to take a day off from work to participate in policy meetings in Washington, because federal regulations say you can’t pay citizens for their testimony in policy meetings. So what do you get? You get professional lobbyists. You get industry employees. Some people say there’s malice in those meetings, with people trying to tilt the system in their own direction—but even if there weren’t, you just obviously never get an outcome that represents the person who is not there.
Inspire: Because they’re not represented.
deBronkart: And it does no good to say, “We were thinking about you when we designed this. We hope you like it.” My own hospital, Beth Israel Deaconess, had complaints about their ICUs some years ago, and they had a big long project to make them more patient-centered, and the moment they showed the newly designed ICU to patients and families, they said it was totally wrong, so the hospital started over with a clean piece of paper and involved patients and families from the beginning.
Inspire: Anything you’d like to add?
deBronkart: A lot of people today are talking about patient-centered care. Well, I say, it can’t be patient-centered if patients aren’t smack in the middle of saying what it is–and saying how it’s going, before, during and after treatment.
(Learn more about e-Patient Dave by reading his blog and following him on Twitter. Please email me at firstname.lastname@example.org if you have suggestions for future Inspire Q&As. Feel free to post comments to this interview, and thanks for reading.)