About the Speaker:
Dave deBronkart is known on the internet as e-Patient Dave. He is an advocate for the e-patient movement where the E is for; engaged, empowered, equipped, enabled, educated, etc. The e-patient movement as he states is patients who take responsibility for having an active role in their health and their care and they seek out doctors and nurses who welcome that.
Becoming an e-Patient
It’s funny, in the 1960 presidential election, John F. Kennedy was running and the reporter asked him how did you become a war hero and he said it was involuntary they sank my boat. That’s what happened with me, I found out I was almost dead of stage four cancer, and in the process of helping my doctors and nurses save my life, I was actively involved and then after that, I discovered that the way I had acted was called being an e-patient. Turns out my doctor Danny Sands is one of the pioneers of that movement.
Twenty years ago he wrote the first medical journal peer-reviewed journal article on how to do doctor/patient email, 1998 in the last century. We have so many patients today whose doctors don’t want to do email. First of all, during my disease, he recommended an online patient community for me, so yes, my doctor sent me to the Internet, which is amazing.
It’s funny because so many doctors today say patients should stay off the internet because there’s no guarantee of the quality of what’s out there. Dr. Sands took the opposite position, there’s no guarantee of what’s out there so I’ll recommend something. Some people think that patient empowerment is about overthrowing medical expertise. On the contrary, Dr. Sands and I both look at it as how do we use his expertise in today’s world, instead of trying to hold back the tide.
I started blogging about the e-patient movement because after I got better he told me about it and then it just so happened that a blog post landed on the front page of the Boston Globe newspaper, I started getting invited to policy meetings in Washington and to give speeches.
Patient Engagement and the Internet
There’s an error in the mythology of this e-Patient Dave guy because once you become an Internet thing you lose control of it. I gave a TED talk and the description of the TED talk is wrong, but they won’t change it, so who knows there’s unreliable information on the Internet. It says that I faced an incurable disease and went to the internet and found a cure that my doctors didn’t know about, that’s not correct, number one, my doctor sent me to the Internet, number two, they told me about the only treatment that might cure a person back in 2007. That was before I got to the oncologist at my hospital and they offered it and they said that they were already planning to see if I would qualify for it.
What led me to be an engaged patient was nothing different from what led me to be an engaged buyer of cars or televisions. I just like to be responsible for my decisions. Although, I’m not a TV engineer a car engineer, or even a car mechanic. I make it a point to learn what I can, so that’s it. I had no idea I was doing something that’s considered abnormal in medicine.
I never say you should be like me, because I mean the essence of patient-centered care is to realize that the whole point is to help somebody with their needs as they define them. Some people want a ton of information, whether it’s about buying cars or dealing with cancer or anything. Some people say that drives me nuts, if you want to take care of me boil it down and just tell me what I need to do I’ll follow your instructions. That’s how I am with cars.
The mission of my advocacy is to help health care achieve its potential, not just for the patients and families the ones who are trying to avoid death or cure a chronic condition or something, but also for the people who saved my life. To get into that department of that hospital, they had to do a whole lot of work beyond what I did in college, they had to take additional schooling, they had to study hard in ways that I didn’t, they had to pass additional exams and not only that but once they got licensed, they had to do good enough work over the years that they got promoted into those units. I want them to have a good life also.
My mission is for health care to achieve its potential, and so for some people who want to be involved, I want them to know that it’s legitimate for them to think and ask questions. I want their care providers to realize that it’s legitimate as well and they should never say stop googling and stay off the internet, if somebody wants to be involved and help, give them a shovel so they can do some of the work, find a way to do it. It doesn’t have to be the MDs time, by the way, there can be numerous other people in the practice that can coach the patient and help them develop their skills.
How do we make everyone happy at the same time? The truth and I say this as a businessman, I am not anti-money, I am not anti-business, I have opinions about what would be the best way to do things. But the reality is that all of those parties, patients, doctors, hospitals, and so on in particular unique — I’ve spoken in 19 countries now, 600 events I’ve seen a lot of different health systems, and the thing that is uniquely American is the pressure of boards of directors to protect every individual organization’s assets. Whether it’s a for-profit company trying to produce dividends or a non-profit that needs to bridge, it’s a real problem, but that’s not something I can address.
All I’m trying to do is sort of alter the quality of the water in the pond that we all drink from. If we fail to notice that informed patients can improve how well it all works out, nobody’s going to be hurt by that right. The whole process of patient arrives at the doorstep of health care, something happens, and you end up with an outcome if the patient is more capable more is possible.
If you want to see how common-sense this is, imagine taking it the other way around, imagine you start with a world of capable people, and then make one of them dumb. I’m exaggerating I’m using a rude word when I say dumb, but obviously, things can’t work out as well. So, we’re just running that movie backward, we’re starting with people who don’t realize — we have so many people so many stories of people who have improved their outcome. In my case, the only drug that might have saved me had side effects that sometimes kill people.
Now, the normal thing to do is say boy I hope I’m one of the lucky ones, but I’d never heard of e-patients, I said so how do I prepare for the side effects. The oncologist said nobody’s ever asked us that. I talked to the oncologist first, I didn’t say who needs doctors. I talked to the oncologist first, he said we don’t have any advice. I turned to the patients they gave me 17 firsthand stories and none of it was any guarantee, but afterward, the oncologist said I wish we could bottle what you did and administer it to other patients.
He said in the BMJ, the British Medical Journal I don’t know if you could have tolerated as much medicine if you hadn’t been so prepared. Think about that, I don’t know if you could have tolerated enough medicine if you hadn’t been so engaged in what he said. I would quite likely be dead, and you know what else— He didn’t just say that in passing, they have a booklet now on how to deal with the side effects, so that’s a real doctor-patient partnership, learning from each other and all of us are better off because of the partnership. That’s exactly what I mean.
Legacy of e-Patient Dave
I would like my legacy ultimately to be that 50,20,10,5 years from now be that it’s normal for people to go looking for information, and for the medical practice to welcome it. I think it would make the world of sense to have a prep call before the visit. In many business meetings you’ll have a prep call before they bring up some issues so that when you get there, your time is more productive. Why not do that with doctor visits? Cigarette smoking finally came to an end, when we started teaching kids in grade school about the dangers of smoking and made go ewe.
We’re still trying to do that with sugary drinks, and so on. Last week I had my first example of my daughter’s a high school science teacher, and I taught a lecture in her class on patient engagement and empowerment and shifting from paternalism to autonomy. Why not start teaching kids to think for themselves, why not start teaching them how to Google safely even when they’re in grade school or whatever is the appropriate grade. Because, then as people grow up thinking for themselves, it’ll be natural not just for the patients, but there are a bunch of those little kids that will be doctors someday too and they’ll grow up thinking it’s natural.
It all boils down to, there’s a wonderful woman named Alexandra Drain, who was sort of my spirit guide in the early days of my doing this work and we had a lunch meeting one day and I went off to a cubical outside her office. She said if you want people to support you, you need something more inspiring than Dave deBronkart or even e-Patient Dave. I came back half an hour later with the slogan “let Patients Help”, which embodies it all. At the end of my TED talk, I got the crowd chanting “Let Patients Help” it became the title of my book. This emphasizes it’s not about overthrowing physicians, it’s about the reality that patients can help make health care achieve its potential better