Evidence and Ethics in Healthcare Research with Dr. Zeke Emanuel

Transcript Generated by AI.

Announcer: 0:00

Welcome to MedEvidence, where we help you navigate the truth behind medical research with unbiased, evidence-proven facts hosted by cardiologist and top medical researcher, Dr. Michael Koren.

Dr. Michael Koren: 0:11

Hello, I'm Dr. Michael Koren, the executive editor of MedEvidence, and I have a really super fun task today to introduce my friend, long-standing colleague and an incredible doctor, Ezekiel Emanuel. Zeke Thanks for being part of the MedEvidence family now. And Zeke has had an absolutely storied career in medicine that goes way back to when we were in medical school together. I'm going to tell you an anecdote in a second about that, but Zeke is the chair of bioethics and health policy at the University of Pennsylvania. He's been advisor to the White House, to the WHO, and he's widely considered as a true thought leader in the areas of bioethics and also in public policy. So again, Zeke, welcome to MedEvidence and I'm really looking forward to our conversation.

Dr. Ezekiel Emanuel: 0:59

It's great to be here. Thanks for inviting me.

Dr. Michael Koren: 1:02

All right. So I'm going to start off on this anecdote that I just shared with you, to remind you, because I think it's really wonderful. So Zeke and I were actually in the same medical school class at Harvard and we both chose the curriculum that involved a more rigorous scientific part of medicine that was run through MIT, and so there's probably about 25 of us in that program, something like that. So I was late to go to school because of a family emergency and I show up to one of the first sessions where we're getting oriented to the other members of the class. I don't really know who anybody was at that point and there was a professor that was going around trying to predict what our specialty would be, literally as first week medical students. And again, this is what the professors did for fun. I guess they wanted to see if you had the personality of a pediatrician or an obstetrician or a surgeon or somebody in a non-patient care specialty like radiology. So they went through the whole group and people raising their hand yeah, I want to be a surgeon, I think I want to be a pediatrician, I want to do OBGYN.

Dr. Michael Koren: 2:03

But Zeke didn't raise his hand. So eventually the professor comes over to Zeke. He says I noticed, Zeke, you haven't raised your hand. Do you know what you want to be? And he says I want to be a medical bioethicist. And the whole class smiled and I didn't know him. This was literally the first time I heard anything come out of Zeke's mouth, but it so impressed me that you knew exactly what you wanted to do. And it also fascinated me because I had no idea what a medical bioethicist is. And in fact you did exactly what you said you were going to do, which is so impressive and really part of our mission here at MedEvidence is to help physicians understand career paths and how people get to certain places. And, given your great success, I think the audience will be super interested in us understanding how you went from that statement in the first week of our medical school class to where you are now as a chairman of a major department at a great academic medical center. So tell us the story, Zeke. I'm super fascinated.

Dr. Ezekiel Emanuel: 3:00

Well, I did. I was an undergraduate at Amherst College.

Dr. Michael Koren: 3:06

Great school.

Dr. Ezekiel Emanuel: 3:07

Double majored in chemistry and philosophy and very interested at that time in ethics and political philosophy, and I was also, you know, pre-med. But I really didn't want to go to med school. On the other hand, as I like to say, being a doctor was sort of overdetermined. My father's an immigrant. My father was a pediatrician. I was the eldest of an immigrant pediatrician and I was very good at science and it's like there's no alternative. You got you know he was pushing medicine, but I was very hesitant.

Dr. Ezekiel Emanuel: 3:50

I had worked a few summers in labs. I found the science interesting, but I didn't find spending my time in the lab interesting. So I applied to med school but I went to England to work in a lab there for a couple of years to see if I really liked it, and it was actually pretty good. I did molecular immunology. I got three papers, including one in nature, done we identified antibody complement interaction sites but it really wasn't exciting to me. I didn't really like being in the lab. Um, and you know, this sort of ethics thing, uh was a pulling. I came back to med school because I didn't have an alternative plan, um, and the part of the story that is relevant is that at the end of our first year of medical school. I hated medical school. I liked my peers, but HST because it was a small group of people was actually great.

Dr. Michael Koren: 5:00

That's the MIT-Harvard combination

Dr. Ezekiel Emanuel: 5:03

Health, science and technology program Right.

Dr. Michael Koren: 5:05

Just for the audience. Yes, yep, go ahead.

Dr. Ezekiel Emanuel: 5:07

I, instead of doing the usual I think everyone went to a lab to work for the summer. I went to Washington to intern at a political newspaper, a political magazine there called the New Republic, which was in it. That was one of its heydays of about 20 year stretch of great reporting and stuff. I spent the summer doing that and I realized two things First, there are plenty of people who were way better writers than I was I wasn't that great a writer and second, I didn't want to report on what was happening. I wanted to do what was happening. So I came back again for the second year because I didn't have a plan B. I didn't, you know. It wasn't clear to me what to do. Alternatively, how to actually get this.

Dr. Ezekiel Emanuel: 5:55

Medical ethics thing

Dr. Michael Koren: 5:56

And it really wasn't a terrible gig to be going to Harvard Medical School. Let's face it, but go ahead.

Dr. Ezekiel Emanuel: 6:00

For sure, for sure. But so during that year someone suggested actually one of my brother youngest brother's colleagues was going to Harvard College and suggested that I become a tutor at Harvard, and so I don't know if you remember, but they had us explore teaching opportunity or not teaching. They had us explore different labs to see where people would end up in the lab. So we had an afternoon a week off and I'm like, well, maybe I could teach an afternoon a week at Harvard College instead of being in a lab. And that's what I did and I taught a Harvard major called social studies where you read everyone from basically Thucydides and Plato and Aristotle to Freud and Durkheim, and it was great, I loved it and I said you know this teaching. I really liked that.

Dr. Ezekiel Emanuel: 6:53

So after our third year of medical school, I took off. I got accepted to the Harvard political science Department, called the Gov Department, for a PhD, and I basically stopped medical school and, you know, did the PhD. The thing about it at Harvard was that you only needed 15 months of clinical rotations to graduate and I had had the 15 months summer and by the time I started the PhD I basically could have graduated. But of course you can't because you have to go into internship. And then I did the PhD in four years and then I went back as an intern and this may surprise you, because I'd sort of been off the wards and forgotten a lot of stuff. While I was working on medical ethics related dissertation, I asked to start in the CCU and every time people who aren't doctors think, well, that's crazy. You know, those are the sickest patients in the hospital and I said yeah, and they wouldn't let a fresh intern touch them.

Dr. Michael Koren: 8:07

That's right,

Dr. Ezekiel Emanuel: 8:07

they have experienced nurses, they have a cardiology fellow.

Dr. Ezekiel Emanuel: 8:11

I'd be there and I could learn. I could remember how to take a history. I could remember how to write the order and after two weeks I'd be up to speed which is exactly what happened and it was, you know.

Dr. Ezekiel Emanuel: 8:24

It was very good learning and I met some of our classmates who by that time were fellows because I had taken off for a PhD. Harlan Krumholz, for example, was a cardiology fellow on the service and I short track because I was impatient and after two years I went and became a Farber fellow at the Dana Farber Cancer Institute and did oncology. And I chose oncology for three or four reasons. One coolest science going on in cancer. In the late 80s, early 90s, we were really at the cutting edge. Every patient had end-of-life issue crisis. That was part of my research. I was heavily focused on improving end-of-life care. And last, there was this whole issue of allocation of resources.

Dr. Ezekiel Emanuel: 9:23

We were even back then, 25 years ago 35 years ago, I mean spending a fortune on cancer. We had bone marrow transplants at 100,000 a crack at that time where we thought it was outrageously expensive, and so it had all of these ethical elements and there wasn't anyone who was really systematically dealing with them and they all interested me. So I chose oncology and the Farber was a fabulous place for someone like me because everyone knew that there were big ethical dilemmas but they didn't have anyone who was going to address them.

Dr. Ezekiel Emanuel: 10:02

So I started something called the Ethics Grand Rounds and every month we had a big ethics case that presented and we brought in an expert and everyone showed up. Unlike the other Grand Rounds, everyone found these interesting, personal. Yeah, we had ones about doing things on clinical trials the ethics of phase one oncology trial, and then the Journal of Clinical Oncology, which is the professional journal of the American Society of Clinical Oncology, began running these articles. So I got a lot of academic credibility there and I think it convinced people that ethics and end-of of life care and informed consent and thinking about research ethics and was part of what they should be doing. And they just happened to have me, so it was-

Dr. Michael Koren: 10:55

-f ascinating, yeah, so fascinating.

Dr. Michael Koren: 10:57

You really were a pioneer in that space, quite frankly.

Dr. Ezekiel Emanuel: 11:00

Well, I, I was. Uh, it is the case that, um, the history of bioethics is such that it sort of took off in the United States in 1970, '71. But a lot of the people who were doing it were not well-trained. They were psychiatrists who were doing it because of whatever, or they were retired surgeons who, after retirement, decided this was an interesting, important topic even though they had no training. So a lot of the early stuff was not particularly good.

Dr. Ezekiel Emanuel: 11:33

At the end of the 70s there was a Jimmy Carter appointed a presidential commission on bioethics to look at a lot of things like gene therapies and stuff, and it got a little more professionalized.

Dr. Ezekiel Emanuel: 11:45

But there still weren't people that were. There were only a handful of people who were both physicians and interested in this, who had some training and that were just sort of talking based upon their intuition and guts but actually understood something about ethical reasoning, and so that's the area that was lucky that I had this overlap and I was one of the few people who both you know, frontline clinical back with oncology as well as and I understood a lot of the science and research as well as highly trained in ethics and political philosophy. It gave me a kind of unique position and it was a I would say again, a time when the profession did open up and did say you know, this is core of what we've got to be doing. And so I was in that unique moment and it emphasized for me, you know, a lot of career success is luck. Are you at the right place at the right time and take advantage of that luck. And I did happen to be at the right place.

Dr. Michael Koren: 13:01

Yeah, tremendous. So, as a quick summary, you made your parents proud. They can say my son the oncologist and you are a true pioneer in a kind of a new part of science. The Belmont Report that we'll talk about came out in 1979.

Dr. Ezekiel Emanuel: 13:17

Yeah, I was part of that

Dr. Michael Koren: 13:17

So literally.

Dr. Michael Koren: 13:18

you know, within about a decade of that we were starting to understand how that applied to actual clinical practice and getting people involved in clinical research. And there were very, very few people, as you point out, that had knowledge both on the clinical side and the bioethics side and know how to navigate those tensions which are actually super interesting. So I'm not surprised you had great attendance to the bioethics grand rounds. I'm sure there was some fascinating cases discussed. So kind of give me the little bit of the scoop from going from training to ending up at Penn and ending up at the White House. That's kind of an interesting transition.

Dr. Ezekiel Emanuel: 13:54

Well, I was at the Farber for seven years and then trying to figure out what the next job was.

Dr. Michael Koren: 14:02

So you were an attending physician there for a while, treating cancer patients.

Dr. Ezekiel Emanuel: 14:06

I would put that in quotes. Yes, I was a classic academic physician half a day, a week of clinic.

Dr. Michael Koren: 14:12

Oh, wow, ok, All right, that counts.

Dr. Ezekiel Emanuel: 14:14

Most of my time was spent doing research. I had a teeny, teeny tiny research group. The biggest it ever got to was two people,

Dr. Michael Koren: 14:24

All right

Dr. Ezekiel Emanuel: 14:24

In addition to me, and we were incredible. I mean, you know it.

Dr. Ezekiel Emanuel: 14:28

Just let me say

Dr. Michael Koren: 14:30

yeah, Watson and Crick were a two-person team.

Dr. Ezekiel Emanuel: 14:33

I had two research assistants and you know we were focused on this sort of medical ethics issues, mainly end-of-life care, but we also focused heavily on physician-patient relationship. We wrote a very important paper on how to understand the physician-patient relationship and I should say an interesting thing happened to me at the Farber. All of you who've worked in academic centers know that the coin of the realm is space. There's never enough space and because of what I was doing, um uh, after my second year, you know, I needed to get a space of my own. Um, the head of my department, which happened to be the epidemiology department, um uh took me on a walk, says well, Zeke, you know we're gonna find you new space. And he took me out of the main building at the farber to walk across the parking lot and then there was this little building in the shadow of a power plant. It turned out that that little building housed all the unused um iron lungs.

Dr. Michael Koren: 15:50

Oh geez .

Dr. Ezekiel Emanuel: 15:50

From Polio, from the 50s and he said you know, there's this second floor suite in the back there and you know you can have four rooms. And I realized this is the place where they put all the people who they're not actually firing but want people to leave. It turned out, you know, I thought you know, basically this is Siberia. It turned out to be a blessing in disguise. Sometimes Siberia can be cold and unproductive and a vast wasteland. But for me, I was out of the flow, out of the politics, out of everyone. You know, spending time, wasting time talking about this and that and who was up, who was down, and I simply focused on my work and it. We turned out to have two people and me and we were incredibly productive, um, just banging out the papers, and then in 1996, I believe '95 um, a job came up to. Uh, they were looking for a head of bioethics at the NIH, not just the head. They, the guy who was head of the clinical center, which is the hospital at the at the NIH, was establishing a department and he thought well, we needed you know, the hospital needed to have a bioethics department. So I applied and, um, the two other candidates were much more senior than I. I was, I think, uh, whopping, uh, uh, 38 years old or something, um, and I didn't do any research ethics. You know, since the hospital at the NIH is purely research, there's no routine patient care there, and I had not done any publications in the research space. Uh, in immune, uh, deficiency, uh, diseases, um, chronic granulomatosis, um, for whatever reason, we hit it off. He went to Amherst. I went to Amherst, we had a very nice meeting of personalities and he gave me the job, um, and you know it was a wonderful opportunity to build something from the ground up, uh, and to, you know, invite people. And it got me also interested in research ethics.

Dr. Ezekiel Emanuel: 18:19

At that time this is 1996, 97. I was like, well, you know, all of that research ethics done. We had the Belmont report, we had the declaration of Helsinki, we have federal regulations what more could there be to do? And I scratched the surface. I began reading these documents and realized, you know, there's a lot more to do. These aren't. They're heavily focused on one thing autonomy and informed consent. But there's also much more about the ethics of research that they're not addressing at all. And, by the way, a lot of the literature that had been published, I thought, was again given my unique position as a doctor, a researcher and a bioethicist. It's like I think they've got it wrong and we could do a better job, of sort of fixing it and putting it right. And so it turned out to be a wonderful, wonderful moment to create a department and to really I think we ended up transforming how people think about the ethics of clinical research.

Dr. Michael Koren: 19:32

One super cool and absolutely spot on is that there's been a huge change in the way we perceive ethics. That we'll get into more detail in a moment, but that's just wonderful story. So tell me about the political part of your career, how that came aboard, and you're well known for those contributions, so why don't? You tell us a little bit more about that.

Dr. Ezekiel Emanuel: 19:56

So I worked at the NIH from 97. And then, beginning around 2003, 2004, I could see I'd done almost everything I wanted to do in the research ethics space. Again, it was an incredibly generative from a productivity standpoint, one of the best experiences you could imagine. We had a fellowship, we had people coming right out of college, we had postdocs. They were all brilliant, they were great to work with.

Dr. Ezekiel Emanuel: 20:31

But I could see that I was sort of getting to the end of all the research ethics things I wanted to really write about. Not like I covered everything, but that I wanted to write about. And I was like the thing that's sort of uh, agitating me is going back to my political philosophy. My government polsci roots was, you know, we don't have universal coverage and we need to begin thinking about it and lay the plans for it. So I ended up writing some stuff and teaming up with one of the uh I like to call them the uh uh three original health economists in the country a guy named Victor Fuchs who was a professor at Stanford. He had just retired and you know we had talked about collaborating and some of our ideas overlap and again, that turned out to be incredibly generative. So in '03, '04, '05, we began really publishing a lot.

Dr. Ezekiel Emanuel: 21:32

Romney, uh, uh, Mitt Romney was governor of Massachusetts and and, uh, put in his Romney care, uh, a legislation that created a way for people to get insurance who didn't have insurance and subsidize them. And then, you know, president Obama was his stuff and I was again writing on this and talking about it. And when Obama was elected, he appointed Peter Orszag as head of the Office of Management and Budget. And Peter Orszag asked if I would come and work there as a special assistant working on the Affordable Care Act. And what was important about that is because I was at the NIH, I was a government employee, I could go there and it wouldn't cost the White House a penny, which is always and one of the things you.

Dr. Ezekiel Emanuel: 22:24

Let me just say two things you learn very quickly. First, the Office of Management and Budget is the most powerful agency you never heard of. Actually, it controls all the budgets, it controls all the regulations. It's really a magical place to be. The second thing is that there are never enough people in the White House to handle all the incoming, and so I always tell students, if they ask you to come and sweep the floors at the White House, you say absolutely I will do it because peas are falling off issues. You can do so much. It doesn't get to the presidential level, doesn't even get to the chief of staff level, doesn't get to the National Economic Council level. There's things you can do. So just give you one example I got there and part of what Obama was talking about was we got to reduce regulation.

Dr. Ezekiel Emanuel: 23:22

So I said to Peter Orszag I said you know, there's a lot of regulation around clinical research that is not helping and just creating a lot of paperwork that we could streamline. So he said he ran it up the flagpole. He said okay, you can put together a group. So I could put together a group from HHS. There's, for a variety of reasons, labor and the feds department involvement and we put together a group and within six months we had a draft of the first ever revision of the regulations of human subjects research and it didn't get passed till January 2017, literally as president Obama was leaving the office.

Dr. Ezekiel Emanuel: 24:04

But that's because I left and they didn't have someone driving it and it was being held up by some people at the NIH, ironically enough, but that's the kind of thing you can do at the White House, and I also happened to work on the First Lady Michelle Obama's let's Move initiative, the food, redoing the food pyramid to make it a food plate. So lots of possibilities, but the main thing I was there for was to work on the Affordable Care Act and that was a thrilling, wonderful opportunity. And I like to say, you know, 22, 25 million people got health insurance. If I was one of a thousand people working on that, you know, okay, I take, you know, 0.1% of 25 million people. There's 25,000 people. I helped 25,000 people. You can't do that every day of your life,

Dr. Michael Koren: 25:00

Yeah.

Dr. Ezekiel Emanuel: 25:00

And every year of your life. It's a pretty lucky opportunity.

Dr. Michael Koren: 25:05

Well, thank you for those efforts, not always widely appreciated, but certainly people in the know do appreciate them. So thank you. So tell us a little bit about from this incredible experience obviously became well known through your work on the Affordable Care Act and then ending up at Penn and in your current position and you tell us a little bit about what you do day to day now.

Dr. Ezekiel Emanuel: 25:26

Well, at Penn I had again the same wonderful opportunity to be at the right place at the right time. They were creating, they had a center for bioethics with Arthur Kaplan headed, but they wanted to change it to make it a department and merge it with health policy. So there were PhDs and they had a lot of PhD health policy people working in clinical departments like primary care, and it didn't make any sense. So they wanted to merge or have the bioethicists and the health policy people in one department and make, you know, give it, unlike a center that has no ability to appoint or hire faculty, it would have appointment power. And again, there you. And again there were no people in the department. So I came and started a department, which was again a wonderful opportunity. I think I was selected because I'm one of the few people again who was both a bioethicist and had expertise in health policy Not everyone who whose bioethics can do health policy and few people who do health policy do bioethics. So I actually was one of the few people who had a leg in both sides. I had a great opportunity to attract two absolutely outstanding people to head each division Steve Jaffe, I recruited from Boston Children's Hospital, and Dana Farber, who's an oncologist and expert in bioethics, part. And Kevin Volpe, who people know because of his great work on the role of behavioral economics and healthcare and using incentives in the right way to head the health policy side. I mostly do what I've always done, which is mostly uh, um, research and it's what up in the morning, writing papers. I'm at the moment, um, I've got uh, uh, two books in the air. One's going to be published in January and I'm working, spent the morning here working on chapter six of the next book, which is the one really about.

Dr. Ezekiel Emanuel: 27:36

I'd like to say why America can't achieve any one of the goals of healthcare. We can't get the universal coverage at reasonable costs, with consistent, high quality, reducing, if not eliminating disparities and having high satisfaction for both the physicians and clinicians in the care and patients. We don't have any of the five. Now.

Dr. Ezekiel Emanuel: 27:59

Most other countries have many of the five. They have coverage, they have reasonable costs on it you know 12 percent of GDP going to health care. They have more consistent, high quality and people actually like their system, even the British, you know we always say well, they've got to wait, and it's dirty hospitals and all of this. Well, it turns out you poll the British. They're way proud of their national health service. They may moan about various parts, but we can't achieve, and we have no path for achieving, those five. You know what we're looking at is our health care spend to go above 20 percent of GDP. We're now at five trillion dollars on health care. You know we and we're getting further and further away from universal comfort. So the question is why is that and is there a solution to that?

Dr. Michael Koren: 28:56

Well, definitely have to bring you back to dig into those really important questions in a much more detailed manner.

Dr. Ezekiel Emanuel: 28:59

I have absolutely no doubt. Yeah, To continue watching this podcast episode. Head over to medevidence. com.