Editor's note: A co-founder and co-chair of the Society for Participatory Medicine, Dave deBronkart, also known as e-Patient Dave, is a leading advocate for engaging patients in their care and allowing patients to access their medical records. He also coauthored Let Patients Help: A Patient Engagement Handbook. He was diagnosed in 2007 with metastatic renal cell cancer.
Dr. Robert Wachter, Editor, AHRQ WebM&M: What have you learned since you entered the world of medicine and patient safety that surprised you the most?
Dave deBronkart: There's this paradox. It's pretty much undeniable that patients have the most at stake in how well medicine all works out, yet—as senior physicians have been saying for decades—patients are persistently the most underused resource in medicine.
My career was in high tech, mostly in graphic arts, and what we would need to do to be effective in our business was get people to change their behavior, to start buying stuff that they weren't buying before. If there are obstacles to that behavior change, it's a problem and you have to work on it. So you learn to look at the underlying cultural assumptions because the culture is like the groove that your bicycle rides in. Dan and Chip Heath call it the "path that the elephant is riding on." I currently think the core challenge is that so much of medicine in the last 100 years has been transformative because of incredible biological breakthroughs. Antibiotics, what we've come to understand about cancer, and all that—we have correctly learned to worship the value of that. But we have taken our eye off of other possible sources of value. I think this is what's at the core of somebody like House MD and some real-world doctors saying to patients, "When did you go to medical school?" Or the many tragedies where we hear about when a clinician becomes a patient or a family member, and finds him or herself now being ignored by other clinicians, and useful information that comes up in conversation gets discounted, shoved aside. As a result, we end up with unnecessary morbidity and mortality.
RW: You gave one possible reason for that disconnect—that clinicians were so busy with bioscience that in some ways it filled up all our receptors. You must have other theories about why we evolved into this state.
DdB: One of the things I have done over the years is openly acknowledge how I have a very limited range of experience in medicine. Compared to many patients, I have a very small number of clinical encounters. I was profoundly affected by the book The Emperor of All Maladies, about the history, not just of the biology of cancer, but of the culture of cancer. I certainly have observed and have heard plenty of cases of outright arrogance, clinicians—sometimes with eyes rolling, sometimes just refusing to come into the room—rejecting patient contributions to the discussion. I don't know enough about what goes on inside the heads of those people. I'm more interested in what could be said that would make any difference, with or without knowing the cause.
RW: How helpful are policy initiatives in creating new conversations between doctors and patients?
DdB: From my experience in other industries, I firmly believe the aphorism that you cannot improve what you don't measure. There are many valid complaints about how useful the measures are, but you have to start somewhere. Many people have written about how you cannot turn it into a numbers game; you have to be looking at the actual change that the numbers will measure. A great example of this is the issue of the Meaningful Use standard for discharge summaries. A clinic recently said that at discharge, they're now giving the patient a printed discharge summary. And a janitor in the building came and asked if there's some problem because the wastebaskets in the men's room were filled with these pieces of paper that all looked the same. If what you're getting measured on is whether you gave the patient a discharge summary, you can check that box, but clearly you haven't accomplished the objective of engaging the patient in understanding their status and next steps and so on. We need to help people understand why we're doing this and I think it starts with first principles. Patients have the most at stake, but they're underused. How can we understand the value they could be bringing and do things that will make that more of a reality?
RW: Do you think IT is helping create new kinds of physician–patient engagements? Hurting? Or maybe a little bit of both?
DdB: This is an area where people tend to have the idea that if we install the computer everything's going to get better right away. And such is not the case. Changing workflow is hard. It all reminds me very much of more than 30 years ago now, when the newspaper industry started to computerize, shifting away from a well-oiled, smooth-functioning, paper-based workflow. More than once I was called into a production manager's office and was schooled about how it is vital that, at a daily newspaper, there's no such thing as "we were a day late." And over time the clunky, ineffective systems that everyone griped about improved. On the other side of this cloud, the storm, there is the new world where things work the way the users need them to work. Clinicians need to start beating on the vendors to make this stuff easier to use. Regarding the human interaction, Dr. Sands, my primary care physician, has felt since the 1990s that the medical record is a shared working document between the patient and the provider. He has always had the screen turned so I can see the data as he's entering it. It's not uncommon for me to discover a typo.
As we start getting to where patients can view the record at home, that will bring the clinical encounter into the greater sphere of life rather than having it be something that only happens at that place down the road. We've all heard many stories of patients being unhappy because the clinician is spending their time looking at the computer. But some places now have a flat screen display on the exam room wall, so even when the doctor is working on the computer they can be talking about what's going in, spotting typos. Famously, one of my radiology reports identified me as a 53-year-old woman.
There's a guy named Keith Boone who wrote the famous e-Patient rap. His 14-year-old daughter, on the way out of the pediatrician's office, told the office assistant to "check the box for e-Patient." We're starting to get people involved. And the bottom line of all this is in my little patient engagement handbook that I coauthored with Dr. Sands, Let Patients Help. As a marketing guy I like aphorisms. One of my slogans is "People perform better when they're informed better." And neither a patient nor a clinician can perform to the top of their potential if they don't have the information, and without computers it just doesn't happen.
RW: In many hospitals patients can access x-ray results and lab results very quickly, often before they've had a chance to communicate with the doctors. And people sometimes worry about whether patients will be able to interpret data, like "there's a nodule suspicious for malignancy," independently. Do you worry about that?
DdB: Well, sure. I testified in one of the first Meaningful Use hearings, one about whether patients should be allowed to look at the record. In my own case, there was one radiology report I read online through our patient portal that—with my inexperienced eyes—looked to me like a particular nodule had grown 30% in 2 weeks. And boy, did that scare the crap out of me. I wrote to my oncologist who gladly accepts emails and, long story short, it turns out I had misunderstood the word craniocaudal. The point that I made in the testimony was that until people get experience, they are inexperienced. And the wisecrack that I tossed out in my book was, "It's perverse to keep people in the dark and then call them ignorant."
I used the example of when my mother, in 1953, with three kids and a traveling salesman husband who was never around, had to learn to drive. In those days women driving was not as common, and it was often the butt of jokes by comedians. The punch line is, today insurance statistics show that women have one-third fewer accidents than the men who used to make fun of them. And from a policy planner's perspective, the lesson is that it's a mistake to judge someone's potential capabilities based on their performance when they're new at it. (I think we need a user-friendly glossary for medical terms people encounter in their chart. I love the idea of a browser plug-in where you could mouse over a word and have something pop up and explain what craniocaudal means.) Bottom line, we shouldn't be surprised that people are confused and perhaps alarmed when they're new to something. But that's no reason to hold back. We ought to just expect it and be ready to deal with it.
RW: You have positioned yourself and your part of the patient engagement movement as being a partnership, not being confrontational with the medical system and clinicians, but more about being in this together and patients can help. Was that a choice on your part because that was what you thought had the best chance to be successful?
DdB: Long ago I took some weekend courses in changing the world one way or the other. I learned that if you understand structural thinking—if you understand feedback loops and the cultural processes that keep systems gyroscopically resisting change—then you land on the question: what could be said that would make any difference? And that's always been my perspective. Now mind you, I'm no saint. There are many times when I want to smack someone on the side of the head and say, "What are you thinking?" But I'm thoughtful about what comes out of my mouth.
I would be dead, without any question, if not for my trusted clinicians. I didn't even know I was sick. I was diagnosed incidentally. I certainly couldn't have done the CT scan that found the tumors in my lungs. I certainly couldn't have diagnosed myself. I certainly couldn't have conducted the treatment, and on and on. And yet, as I published in an essay in the BMJ, my oncologist says that I was really sick, and he's not sure I could have tolerated enough medicine to do the job if I hadn't been so prepared and informed about how to deal with the side effects with information that I got from the patient community. As I said at the end of that piece, my engagement didn't contradict the doctor's contributions, it added to it. It's a perfect example of the partnership relationship I talk about.
Another aspect arose when I learned about the Institute of Medicine's Best Care at Lower Cost report that said that one-third of our spending is excess. You can infer from that, maybe we have to cut out one-third of what we're spending. How are we going to make those decisions? To do that, you need to understand all the events that happen during a case, all the resources, treatments, technology, and medication brought to play. The best thing is, again, when we all act as a partnership—when the clinicians, patients, and families are all listening to each other. We have a lot of work to do on figuring out how we do that. But great things are already happening.
RW: Do you think the malpractice system is an obstacle? That it sets up clinicians and patients as potential adversaries?
DdB: One word: oy. Such a mess. Talk about perverse incentives. I'm no expert on this subject. I'll just point to what I've heard over and over again, that when there's an open trusting relationship people are less likely to sue. I would not think of suing unless there was egregious malfeasance. I mean really egregious.
RW: There's a theme in the safety world, which is: what can patients do to protect themselves from harm and from errors? This gets played out periodically in patients being asked to ask their provider whether he or she cleaned their hands or things like that. What do you think of that? Do you think it works? Do you think patients and families want that role? How do you think this is working?
DdB: I have increasingly come to see that a core source of dysfunction is the shared belief, and I can only call it a mythological belief, in the God-like perfection of well-trained clinicians. I've talked to numerous clinicians who were told explicitly either during their training or residency that it was their job, sometimes even their sacred responsibility, to convey the impression of certainty even if they didn't have it. To me, that is a set up for disaster when things go wrong.
A year after my own case, I bumped into a marvelous elderly oncologist, and he talked about how it used to be that when a patient would say, "Doctor can you save me?" He would say truthfully, "I don't think so," and he'd watch the life go out of them. Now he says, "I don't know—but we will try." Then he tells the patient, "Just one thing: if we succeed and you survive, you must drive carefully," bringing humor into it: we don't want to save you and then have you get killed in a car crash. This human touch—empathy and humor—is part of the magic of the doctor–patient relationship. How do you computerize that?
RW: If somebody made you Dean of a medical school for a week, what would you do differently than is being done today with students?
DdB: Well, I'll go one level beyond that because one week to change culture is not much. If I could wave a wand and cause a perception to be clearly present and disseminated, it would be that medicine is a difficult, dangerous, complicated pursuit, where the best available information is changing constantly. Please, let's not have clinicians bear the insanely unrealistic expectation of perfection either for themselves or the patient or the family expecting that. Let's figure out some way to have everyone agree that this is difficult and dangerous and we're all in it together, and it's a blessing when either party catches the other doing something that they know could be done better.
The underlying idea here is that the patient and family can indeed be either direct observers of, or conveyors of, genuinely useful information. And if our culture slams the door on that possibility, turns its back on that, then we have just forcibly shoved the outcome downward. So what I would try to do is grow a generation of doctors in a medical school who understand this and think of their practice as a partnership, where part of the art is to develop the skills of the patient and family at being better partners.
RW: What gives you hope?
DdB: I gain hope from the openness about patients being active partners that I see among new doctors coming out of school. It's certainly not exclusive to them. Tom Delbanco, the head of the Open Notes Project, is quite a senior lion at Beth Israel Deaconess and he absolutely thinks this way. People perform better when they're informed better. Dr. Sands expresses it as: "How can patients participate if they cannot see what I see?"
As the shared hospital medical record and individual data-gathering gadgets start to build a cloud of information around the patient and family, it will become possible for patients and families to offer more contributions. Some people worry that this will put doctors out of business. Think about it—a hundred years ago, to get their numbers checked, a person with diabetes had to go to the doctor. Now we have test strips, meters, and CGMs (continuous glucose monitoring), and as far as I know they haven't put endocrinologists out of business. New awareness tools enable more appropriate actions and in no way eliminate the need for clinicians. The information shift is profound when we think about the workload the system faces—if we go into the visit with both parties knowing what's going on, then we can spend the visit talking about what we do about it. And that gives me hope.