Judson Howe
There's a moment, it seems, that when every world changer decides that something is important, there seems to be a gut punch moment for them. When they decide that the field or the passion they're going go into is worth their effort and time. For co-production, shared decision making, do you have that gut punch moment?
Glyn Elwyn
Really tough question, actually. I guess you need to think about what led to this interest. Probably one of the most salient things to say is that I lost my father when I was seven. So he died suddenly one night of a massive heart attack. I think that changed my life a lot. So then I grew up with a very young mother. She was 26, I think at the time when she was widowed. And it wasn't a tough childhood, but it was different, right. I had to kind of find my own way a little bit. Had to become a bit autonomous.
Judson Howe
Where did you find mentorship in an environment like that?
Glyn Elwyn
I'm not sure I did, actually. Some of the schoolteachers were pretty good later on, but I think at first I struggled to find my way in that environment. I also realized I think that nobody else is going to make things happen, right? It was on me. And so, at first I wasn't that good at school and I realized at the age of about 12 or 13 that if I was going to make anything happen, it was going to be me. I guess I started to work a bit harder. At the time as well, actually, I made the decision — and this may sound strange to you — but my education up until that time had been in English and there was a new development in Wales at a time where you could choose to educate yourself in the medium of Welsh, my mother tongue. I learned English when I was nine because the television arrived, actually. And my father at the time, before he died, brought the first television into the community because he was capable enough to set up a generator to run the electricity, to run the television. So all the neighbors came around to watch the television in our house. And after that, a few years later, English came because of the cartoons came and so on. Cartoons from America. Anyway, I digress, but that's important I think because changing into the medium of Welsh gave me a much smaller classroom and some very motivated teachers who said you seem to be doing okay. And after that I decided, I'm pretty good at the sciences, physics, biology, chemistry. But I was also a bit stupid, honestly, because I had a home laboratory, and I had bottles of ether on the shelf in the laboratory at home, and one of these ether bottles blew up one day and I was caught in a fire and had to go to a hospital for a few months. So that was a rude awakening to say, don't mess with ether bottles. And so at that time — also lack of mentorship — I decided, ah, I've lost a year of school, I can't possibly go into medicine anymore, which is what I was aiming for. So I decided to go do an arts degree. So I did Welsh and theater in a university in north Wales called Bangor University. I enjoyed that tremendously, and I learned an enormous amount about theater. You know, the Absurdist Theater in France and Brecht in Germany, and so many things. I probably decided, I'm not sure if I want to be a teacher, because that was the route really I was heading for, right? So I decided to talk to my professor at the time. He was called Bedwyr Lewis Jones, and say, hey, would you write me a letter to try and get, if I can try to get to medical school? And he did. And the caveat was I had to get a high enough, a good enough degree to get entry into medical school. So that's how things started.
Judson Howe
Paint the picture for me. You're applying for medical school. How challenging was it in that time in Wales to get into medical school?
Glyn Elwyn
Well, I'd done a first degree, right? So I was a bit older because in the UK you go to medical school at 18,19. So most of my people when I went to medical school were three years younger than me. They were 18, 19. By this point I was 21, 22 because I'd done an arts degree. So I was unusual at medical school. I don't think it was that difficult, but I was very fortunate because I'm not sure I would've got the grades in biology, physics, and chemistry. I had a Welsh degree, right? And so there was a route, what I call the backdoor into medicine, which was called the first MB, which is you study in university in Cardiff at the time for one year in order to qualify you to get into medical school. And that first year was great. I studied botany of all things, and then I got through the backdoor into medical school. So that was a kind of a lucky stroke for me.
Judson Howe
You said your first degree was in arts. How has that shaped your practice of medicine?
Glyn Elwyn
Oh, big time. Big time. Because I learned a lot about what's driving human behavior. how people interact and communicate with each other. I put on a lot of plays and directed plays and I was quite the actor for a while.
Judson Howe
Has that shaped in any way the way that you engage with patients? Give me an example.
Glyn Elwyn
Well, theater is all about communicating and conveying emotions and having impact on an audience. And I think when you are communicating in healthcare on an interpersonal level, it's all about those listening and being curious and being aware of the person in front of you so that you are communicating deeply with them. So that's probably been quite a big influence in terms of my choice of area to focus.
Judson Howe
Was your mother supportive of you making that transition to medical school?
Glyn Elwyn
Well, all these decisions about my education, changing to do my education in Welsh and going to university, were my decisions. She wasn't part of that decision-making.
Judson Howe
Why is that?
Glyn Elwyn
Not her world. Grew up in a very different time. Hadn't been to university, hadn't been to college, she was not familiar with that world.
Judson Howe
So even the act of you going to college was outside of the precedent set by your immediate role models.
Glyn Elwyn
I don't know any in my community that did that route.
Judson Howe
And yet you've become this world changer, and you wake up every day thinking about ways to advance the things that you're passionate about.
Glyn Elwyn
Well, I've certainly worked at it. I'm not sure I would wake up every day thinking about it, but I've tried to push this area forward, that's been my goal.
Judson Howe
Walk us through the Welsh experience about how you enter the practice environment.
Glyn Elwyn
So here I am in medical school, a very strange environment for a boy who grew up on a farm in north Wales, right? Meeting people who'd got mothers and fathers and generations who'd been to university before. So it was new. I had a role model in my own community, actually the doctor who came to visit my father the night he died, who was a family doctor, a general practitioner, as we call them in the UK. And he was a big role model for me. He was esteemed in his local community. He knew everybody. And that at the time was a very important role model for me in terms of maybe I could be somebody like that, who was really important in the community and adds value.
Judson Howe
Paint the picture for me. So we're in Snowdonia, it's a mountainous region, I believe. You mentioned you were on a farm. Why would your father have died of a heart attack in that setting as opposed to receive interventional cardiology care in that environment?
Glyn Elwyn
Well, he was a big smoker. I think he had around 40 unfiltered cigarettes a day because that's what people did at that time. Hhe had a massive heart attack. I don't think his diet was very good. But the main issue was smoking. There was no telephone in the house. You call the doctor. He came two or three hours later in the middle of the night. Interventional cardiology? Nobody knew what that was. He died in his bed.
Judson Howe
So this GP comes, general practitioner comes several hours later. Do you know this GP? Was this your GP as a family?
Glyn Elwyn
Yeah, Dr. Davis. He was on call every night of the week, every night of the year. 365 days a year. Absolutely.
Judson Howe
Did he have lived experiences as well? Was he in that community as well, living a similar life?
Glyn Elwyn
Sure, everybody knew him. He lived all his life there.
Judson Howe
He grew up there? So he had gone off —
Glyn Elwyn
To college somewhere and gone back here.
Judson Howe
And largely that's what you did as well then?
Glyn Elwyn
Well, no. I mean, I went to Cardiff, which is five hours away from where I lived. And then I went into, actually, I went to Africa and then got back to Cardiff. That's a long story. But I eventually settled in general practice in Cardiff in Wales.
Judson Howe
How long do you practice in general practice?
Glyn Elwyn
It's probably about a decade. And then I became interested in medical education. I did a master's in medical education, and that sparked my interest in doing a bit more actually around writing. And I decided to do a PhD and a doctorate, and I went to the Netherlands to do that. I'd been in Wales all the time in my education, apart from being a year in Africa as I mentioned, and I wanted to see how other people did things. So that was a very important move for me, actually, the PhD in the Netherlands.
Judson Howe
What did you study your PhD in?
Glyn Elwyn
Shared decision-making.
Judson Howe
Really? The PhD is in shared decision-making.
Glyn Elwyn
Yeah. I developed an instrument to measure whether or not clinicians are doing it or not. At the time it was 12 items where we videotape, just what we're doing now, or audiotape a doctor and a patient doing their work, and we assess to what degree they are giving them treatment choices, whether or not they're explaining the choices, whether or not they're listening to what the patients think about those choices, whether they try and match then the choice to what the patients thinks is important. So that's the core of shared decision making, and this measure has been used many, many times now by many people all over the world to assess whether or not clinicians are doing that process.
Judson Howe
What led you to develop that process?
Glyn Elwyn
There was a guy from Dartmouth here called Al Mulley. He was actually, well actually he was at Harvard at the time, but he came to Wales to give a lecture. And he talked about these tools called decision tools, decision aids. And I went to listen to him and I'd never heard about this, a funny idea that came from Boston about involving patients in decisions. So I read into that, got more interested, and that's why I said, well, but we don't know whether or not clinicians are doing this. So that sparked my interest. And after a couple of years of reading more about it, I said, maybe we can develop a measure here. And actually, I was interested in having a PhD, a doctorate, as well as a medical degree.
So that's how that happened.
Judson Howe
Take me to the first time that you tried to apply decision aids in a patient experience in your practice.
Glyn Elwyn
Well, we started off with very, very simple tools. There was a colleague of mine in Cardiff called Adrian Edwards and myself, and we said, let's give people some bar charts, some colored charts of how often something happens, how often a benefit happens if we give somebody a treatment, how often the harm happens or side effects. And we'll give them these charts on pieces of paper and we'll try and help the clinicians give these pieces of paper to them and explain that there are more than one option possible. So that's where we started. We got some funding for that. Actually we were both early researchers at the time. So that's the first example. And of course, this measure called Observer Option 12 at the time, it's now five items, Observer Option 6, we began to use that to see whether the clinicians were changing their behavior or not. So that was the first example.
Judson Howe
How was that received when you first rolled that out?
Glyn Elwyn
You know, there was a bit of an interest. We got enough doctors to try them.
Judson Howe
How'd you do that?
Glyn Elwyn
We had a trial. We got funding from the government to do a trial. And we got enough clinicians, primary care doctors, actually general practitioners interested to try these tools out. But of course, it was a study and once the study was over, that was it, there was no more interest.
Judson Howe
What was the result of the study?
Glyn Elwyn
Oh, we showed that by using these tools, the involvement levels between the clinicians and the patients went up.
Judson Howe
When you say involvement, what's the problem that we're trying to solve with involvement?
Glyn Elwyn
Well, traditionally in medicine, clinicians will say, here's the diagnosis and here's what we're going to do here. Here's the treatment. But increasingly in medicine, there's more than one possible treatment. And this was now in the 90s, well, late 90s, early 2000s. By this time, it's even more true to say that there are many treatment options that you need to, in my view, put in front of the patient to say, what's going to fit your life and your preferences? So that's at the core of shared decision making, is to say, I'm curious enough about you to see what's going to suit you. At the time, this was a very new idea. The measure I developed in the Netherlands, nobody had done anything before like this. And so our trial was the first trial of a decision aid in Britain, essentially.
Judson Howe
This is novel to the practice of medicine where you were at?
Glyn Elwyn
Yeah.
Judson Howe
Why was this not just innate to the practice of medicine in your community at that time?
Glyn Elwyn
Well, it was not innate to the practice of medicine anywhere, apart from these people in Boston — Al Mulley, Mike Barry, Jack Wennberg in Dartmouth, and so on, beginning to talk about this idea of sharing decisions with patients. So this was a focus. And then there was another focus in Ottawa — Annette O'Connor and her group there. But this was very new. There was a very famous paper from Canada called, It Takes Two to Tango by Kathy Charles, a sociologist from McMaster, who kind of brought this idea at least to academic medicine. And from then other people began to say, hmm, that's an interesting idea, but it's never going to happen. It's too idealistic. This is not how medicine is practiced.
Judson Howe
Just for me to understand better, what I'm hearing, the root issue is you have a highly trained professional speaking to a patient that is assumed to be less educated in that topic, which is likely factually true. And that's leading to some sort of a power dynamic between the two.
Glyn Elwyn
Yeah. Power asymmetry. And, I think that the role of a clinician is to level the playing field so that people understand what they're getting into, and that they make choices which is aligned with what they feel is best for them. You can't do that without informing them. If I say, would you like this fruit or this fruit, I'm going to have to explain to you, or at least give you a taste of each, right? To say, which one is your preference? So the idea of shared decision making is to give you enough information that you've got enough data to make a choice that you feel is aligned with your interests.
Judson Howe
Is interest the word? Or values?
Glyn Elwyn
Values, maybe. Values are difficult things, right, because they're a bit abstract, values. What I'm going to say to you is that this side effect happens in this percentage of people. This benefit happens in this percentage of people. On the average, there's more benefits than harms, but some people value some benefits more than others, so which is it for you. And I think a lot of doctors feel that this is too cumbersome, too much work, too complicated to put in front of patients. My argument would be, and an argument of a lot of my colleagues buy now, is to say this is a much more equitable way to practice medicine.
Judson Howe
I've heard people say that humans broadly or generally do not understand risk well. So wouldn't that conflict with your ability to help the patient make an equitable decision or an interest-aligned decision?
Glyn Elwyn
It's true that numeracy is difficult to gauge, in terms of imagining future risk is difficult, 5%, 10%, 15%. But you can help people understand what a possible future looks like, that most people end up with this kind of outcome, a small percentage have this kind of outcome. How much do you want to be in the camp with these kinds of outcomes versus these kinds of outcomes? And is there anything about what I've described to you so far worrying you or looks attractive to you?
Judson Howe
Are you normally talking to the patient, or more of a family member or child or spouse?
Glyn Elwyn
Well, ideally, patient and their relatives. And typically what happens when you share a decision this kind of way with the patient is that they say, whoa, hang on a moment, I didn't realize that I had to be involved, I had to take responsibility. I want to talk to my relative. So one of the challenges of this approach is that it slows things down because people want time to think. They want time to discuss with their family members. And medicine is not built like that. It's built for speed and efficiency and seeing a lot of people quickly.
Judson Howe
Does it really slow down, or is that just a narrative that people are – is that a fear that practitioners have? Have you measured that?
Glyn Elwyn
You know, they say it does slow it down a bit, but not by much. But what I would probably argue is that, for most decisions, are not urgent, not that urgent. You may need more than one visit and one conversation, which for a major decision I think is completely appropriate, especially if you're taking a medicine for the rest of your life or for many years. or thinking about a procedure that's going to have some effect on your life. So I think it's fair enough to deliberate carefully about that decision. So it does slow it down a little bit in my view, and it requires an investment of time for both the patient, which is unusual for them, and the doctor, which is also unusual for them.
Judson Howe
In a clinical environment where shared decision-making is happening well versus a clinical environment where it's not happening at all. What's the effect on utilization downstream from that visit?
Glyn Elwyn
Right, so this is a complicated question. There's an emerging evidence base that if you do this well, people adhere to their chosen medication or treatment in a much better way. And it's kind of logical, right? If I've involved you in this decision and you've understood what's involved in making that decision or carrying on with this medicine, you're likely much more adherent to that because you've bought into it. You've invested in it yourself. We know that when people with asthma, for example, learn about the brown inhaler and the blue inhaler and which one to use first, they understand how to self-manage. And so they've invested their ability to titrate sometimes the medication to their needs, but also how to manage their asthma or long-term condition. So in those situations, shared decision-making makes a lot of sense and leads to better outcomes. There's also evidence to say that when you explain to people, do I need a new hip or a new knee? And they understand, oh, there's a lot of work getting back to my normal function after a new knee, maybe months of physiotherapy before I can work again or ski or play tennis or whatever. They say, well, maybe I'll wait. I'm not quite ready for that yet. So people make conservative decisions when they know what's involved. They act in their best interests.
Judson Howe
You're saying statistically, they're more conservative.
Glyn Elwyn
Yes.
Judson Howe
And potentially you're saying that that is also in their best interest.
Glyn Elwyn
Well, the patient has decided that that's in their best interest. Yes.
Judson Howe
Take us back to the storyline then. So chronologically, you've got this research grant to experiment with the early phases of these decision aid tools. Where does this go?
Glyn Elwyn
I do more of that kind of research. After my PhD in the Netherlands, suddenly I'm offered a chair, like a professor of general practice. Pretty quickly after that my work grows in this area
Judson Howe
Are you still practicing?
Glyn Elwyn
Yes I'm still practicing I'm still practicing in the Docklands in Cardiff, an area where there are refugees from Somalia and so on so it's quite a poor area. But then the opportunity comes because I've been to Dartmouth College here in the USA a few summers for a summer school, and suddenly there's an opportunity, I'm invited to say, would you like to come to Dartmouth for a couple of years to help us research this area? Dartmouth has always had an interest in this area from Jack Wennberg's work here in practice variation onwards. So I arrive here saying, I'm going to be in the USA for two years. But that turns into a longer time.
Judson Howe
You've also invented something called the option grid. Where did that come into this chronologically?
Glyn Elwyn
So one of the grants that we got in Wales was to make a web tool for breast cancer, women with breast cancer. So it was called BreastX, Breast Decision Explorer, BreastX. And it took an enormous amount of time to look through it. Probably if you read everything in the web pages, you would be talking 40 minutes. And we analyzed where people were using this web tool and they were spending most of their time on a table where we'd had a few questions and comparison between the mastectomy and the lumpectomy with radiotherapy. And we'd asked a few questions and answered these questions in cells on the comparison table. And they were spending most of their time there because that was the most useful feature of this website, which was far too long.
Judson Howe
40 minutes, and inside of there, there's this matrix, this table.
Glyn Elwyn
Exactly. Decided to call it, eventually we called it an option grid.
Judson Howe
Where did that come from?
Glyn Elwyn
Somewhere in here, I think.
Judson Howe
What was that about? It's a grid and there's options on it.
Glyn Elwyn
Yeah, exactly. And the name stuck, you know, and I think the name has stuck with quite a few people, actually.
Judson Howe
There's actually options. You've also invented these catchy sounding metrics as well. And it's almost as if they're out of the Stanford design school. CollaboRATE, integRATE, consideRATE. Why are these so important? Why does medicine need them so badly? And give me a real story of how they've actually changed how a clinic or a hospital treats patients.
Glyn Elwyn
Okay. So we started with collaboRATE, right? I like catchy names, right?
Judson Howe
Is this part of your art background?
Glyn Elwyn
I guess so. I like catchy names. And I wanted to make a measure that people would remember. To collaborate is about exactly what we're trying to help. It says what it says on the tin. So these three items we worked a lot on, the wording of them. We interviewed a ton of patients about, have we got these words right? And if I can, I'll try and remember the items for you. And I'll ask you the items. In your last visit with your clinician, how much effort was made to inform you about your health issues? Was it zero, no effort at all, nine, maximum effort?
Judson Howe
Three.
Glyn Elwyn
Three. Second question. How much effort was made to listen to what matters most to you?
Judson Howe
A four on a good day.
Glyn Elwyn
Third question. How much effort was made to include what matters most to you in what happens next?
Judson Howe
Same. I'll give it a three.
Glyn Elwyn
So let's add those up. Three and four and three.
Judson Howe
I think that's 10.
Glyn Elwyn
- So the maximum score is 27. Three nines, right? So what is that? You've got 10 out of? 27. 27. Let's call that 30%. So now I ask doctors this question. What do you think patient score for you is on a percentage level? And most clinicians say, maybe they give me a 10% on these items because they think that they haven't done very well across these three items. So they know that. And then I ask the patients themselves. We don't ask these questions to the doctors, we ask the patients. So I'm going to ask you now, what percentage do you give, do you think, what percentage do you think that patients give their doctors? Are they at 20%, 50% or higher?
Judson Howe
Lower than 20%.
Glyn Elwyn
Patients give clinician score about 65%, which is much higher than what most doctors expect. So patients give doctors high scores on the collaboRATE score. In other words, they're very generous with their scores. But clinicians kind of know that they don't do well across these three items. So my feeling is that these simple questions are beginning to address the degree to which clinicians think they're doing shared decision-making, but they also give us a clue of what patients are thinking. Because they do vary between doctors and doctors. Some doctors get high scores, some doctors get much lower scores on the collaboRATE items.
Judson Howe
So they're pretty useful comparatively within the same practice then?
Glyn Elwyn
Yes, if we had enough data. But your second question is, is any healthcare system using these? Not really. We've seen them happen in research projects, but no system is using these routinely, even though they take about 20 seconds to measure.
Judson Howe
How does that feel to be a researcher that's worked so hard on this and it's not being adopted?
Glyn Elwyn
Well, that's the way of the world in terms of research. The option grid story is a little different, but measurement of patient-reported outcome, and this is a patient-reported experience measure, it's very difficult to get them implemented.
Judson Howe
And yet you're telling me that this is shown to be effective. This is quantified.
Glyn Elwyn
Well, we now can quantify what patients think of their clinicians. And with the other measure, I mentioned the recording, we can also actually observe what clinicians are doing. But the interest in measuring this in a system level, at the practice level, is virtually non-existent.
Judson Howe
Can you say non-existent anywhere in the world? Or this is the United States, we're not using it well?
Glyn Elwyn
We do it in research projects. People get research funding and they measure these things. In the normal world, nobody is measuring this.
Judson Howe
Why?
Glyn Elwyn
Well, I guess nobody is interested in the result.
Judson Howe
And yet the result creates a better relationship in patient visit, lower utilization, better outcomes, but we're not interested in this. How do you reconcile that?
Glyn Elwyn
That's a tough one. I cannot reconcile that. I spent you know 20 or 30 years trying to promote this way of working because I think it gives advantage to patients. I think it would give major advantage to health systems. But I also happen to know now it gives advantages to clinicians too.
Judson Howe
You mentioned Jack Wennberg. Is this why he brought you here for two years?
Glyn Elwyn
It wasn't Jack, actually. It was Al Mully. He had come here to Dartmouth from Harvard to work, and he knew of my interest in shared decision-making and my research in it. And he said, would you like to come over to Dartmouth to work? And I said, okay, for two years I will.
Judson Howe
How did he think that that fit into his broader goals for Dartmouth?
Glyn Elwyn
There was a new unit here called Healthcare Delivery Science by President Kim, who was here at the time. And actually that led to the Masters in Healthcare Delivery Science, which I think you've done.
Judson Howe
I have.
Glyn Elwyn
So that was a whole development, and I came to join that group.
Judson Howe
We've talked about CollaboRATE. What is integRATE? What is consideRATE?
Glyn Elwyn
IntegRATE is a measure, four-item measure, of the degree to which people feel that their health care has been well integrated or coordinated. Four-item measure, works pretty well. I don't think anybody's using it. And consideRATE is about what matters to you as a patient with serious illness at the end of your life.
Judson Howe
Thinking through, and it's a field that I don't know well, Glyn, but maybe you know better than I do. And one of the things I'm trying to do with this podcast series is understand, specifically in the United States, a healthcare market that we know many things that we can and should be doing better. And we're not doing that. And I know that's not unique to the United States, but the field I don't know well is implementation science. How do we go about taking best practices in medicine and applying them systematically to the work that we do? Recognizing here we have a place where we haven't effectively done that.
Glyn Elwyn
I think you put value on them in some way.
Judson Howe
Does that mean dollars?
Glyn Elwyn
Not necessarily. I don't think so. I mean, incentivization of these behaviors might be problematic, actually. But you put value on them in a different way. You say to clinicians who adopt this approach, you are esteemed, you are the professional leaders, you are champions, you are delivering the best patient outcomes. And you are practicing medicine at the top of your professional license. You're curious about patients. You're curious about what matters to them. And you're delivering preference-sensitive, informed decisions that make everybody happy — both you and the patients. And by the way, it leads to much less complaints and litigation.
Judson Howe
We've got a million studies here showing that patient-reported outcomes are the future. That's an exaggeration, such as turning every clinic into a research lab. But it's crawling at a snail's pace, and I'm just trying to dig deeper. What's the real friction? Is it cowardice? Is it red tape, or are we just lazy?
Glyn Elwyn
Well, I think the system here in the U.S. and many, many other countries, I'm not pointing at the US necessarily, is that that's not the value that's driving the system. The driving is efficiency, volume, versus putting quality on the conversations and the wise decisions made. I have a quip that, you know, there's a million boardrooms in medicine every day, and the boardroom is that interaction between the clinician and the patients. Those decisions as to what to prescribe, what to refer, what test to order, is where the money is spent. All the money is there to fulfill those decisions. What I prescribe, what test I order, who I refer you to. And so if you get those decisions right, I think the cost to the system would look after itself. Because if you made the decisions in the interest of the patients and the clinicians working together, you'd get a much more high-quality healthcare system.
Judson Howe
So frame this then differently. Let's say you're the president of a large insurance company. What are you doing then to make sure that some of these things get implemented?
Glyn Elwyn
Well, we're not that far away from a mechanism where we could, right? Let me play out maybe a science fiction situation, but we're not that far away from it. We know that ambient recording has happened now. And ambient recording is being used in order to help the clinician put information into the clinical record.
Judson Howe
I want to go there, but let's describe what ambient listening is for those that may not know.
Glyn Elwyn
So ambient listening is, imagine you and I are the clinician and the doctor, and somewhere in the background there's a recording device.
Judson Howe
Okay.
Glyn Elwyn
And that recording is digitized, and then it goes into a transcript, and that transcript gets analyzed by artificial intelligence and codes that so that the doctor doesn't have to type afterwards. It saves many hours of the doctor's time. So that's the current use of it, and it's a very good use. Don't get me wrong. But what a treasure trove you have in that recording because we have the measures. You could analyze the recording to say, to what degree did this doctor follow guidelines? To what degree did this doctor share some options? To what degree did they become interested in the patient's view? And to what degree did that doctor and the patient work together to find a decision that suited them both? We have the digital information, so what's stopping us from putting a score on that and giving friendly feedback to the clinician to say, you know, you're doing pretty well, but you could do better by doing it A, B, and C. I'm not saying punish the clinicians who are doing poorly. I'm just saying give them a mirror to say you could improve here.
Judson Howe
Yeah. If we were to adopt decision aid tools, option grids across the country, what would happen to the cost and utilization of health care in this country?
Glyn Elwyn
Well, we don't know for sure, but all the studies that we've done in elective surgery, for example, the studies done by Group Health before they got taken over by Kaiser, I think, in Seattle, showed there was a 10 or 15 degree drop in the cost of operations across that system. So there's evidence in elective surgery that the rate of operations drops quite dramatically when you use these kind of tools. In the hands of actually clinicians who are not that well-trained in shared decision-making, they just use the tools.
Judson Howe
I want to talk a little bit about learning health systems, which I understand you'd have some background in. There's a lot of people, a lot of organizations, American health systems, that like to virtue signal or brand themselves as learning health systems, as if it's a buzzword, something that goes on their PowerPoints. But who's actually walking that walk in the United States?
Glyn Elwyn
Well, I think there are a few. I teach this area to the Masters in Public Health students and other students here at Dartmouth. And there's a few examples that stand out. I'm just going to talk about two of them. The Cystic Fibrosis Foundation, under the leadership of Bruce Marshall, he may have retired now, but for the last 10 or 15 years, I can't remember quite how long, he's invested in a learning healthcare system across many, many clinics that look after patients with cystic fibrosis, young people. And what they did is to invest in data collection from patient-reported outcomes and other measures to say, how well are these hundreds of clinics doing when compared to each other? And so you have an infrastructure of data collection, then of data comparison, and then a feedback loop to all the practice to say, here are the people who are doing really well at looking after these patients. And the others say, yeah, but we're not doing quite as well. How can we get to be as good as those people? So they have a meeting regularly to say, how can we learn from one another? It takes humility. It takes courage. It takes sharing of data. And it takes benchmarking along the way. That's what a learning healthcare system is. And by the way, they also got some very new drugs in this area, and they implemented those very quickly because of this existing network.
Judson Howe
What are the rest of us getting wrong?
Glyn Elwyn
Well, it's quite tough to do this, actually. You know, it sounds pretty easy to collect the data, share it across different systems, right? Different practices in different healthcare systems. What you need is enormous amount of leadership and courage to do that. Break down the silos of how can we share data at a granular enough level to compare ourselves with each other. That takes bravery and honesty. And I think most clinical systems are in this competitive game of we don't want to share outcomes with other people because we don't want to look bad. Another example from inflammatory bowel disease for young infants. There's a group here, I think at Dartmouth, was involved quite a lot in this. They did this learning healthcare system slightly differently. They were worried about the child with inflammatory bowel disease having more attacks. And the doctor said, yeah, we definitely need to bring the level of these attacks down. And then somebody said, yeah, but is that what the parents worry about? So they asked the parents, they involved the parents in this decision about what to prioritize. And the parents said, yeah, we're interested in remission levels going down too, but we're interested mostly in steroid-free remission, we don't want steroids because they affect the growth of our children. So they modified the outcome measure that they wanted to focus on. So for a few years, they measured how successful each of the practices was at getting their steroid-free remission down. And over a matter of a decade or two, they went from about 30% or 40% steroid-free remission right up to 80% steroid-free emission across all the practices. So that's a big change. Now, it's not a randomized trial. There were other secular changes going on, new drugs and so on. But as a group, these practices learned and improved together.
Judson Howe
But we're not yet seeing it in FQHC systems, hospital systems, academics even.
Glyn Elwyn
No, because there are challenges to that degree of leadership and data sharing that make that happen. And these are typically led by strong leaders or investments by foundations or other systems. And without systems saying we care about this ability to learn together, you won't see it happening.
Judson Howe
You know, many of us in America are naive to Wales. You have a prince, maybe. there's a lion on your flag, I think.
Glyn Elwyn
Dragon.
Judson Howe
Dragon, excuse me. I want to get that right. And here you are, a Welsh innovator in this crazy American healthcare delivery system that we have. How does your Welsh perspective shake up the U.S. approach to co-production and shared decision-making? And be honest, what do you find downright baffling in this American healthcare work?
Glyn Elwyn
What baffles me about the US is the lack of solidarity at the community level, at the population level. I visit a lot of countries now, the Netherlands, Denmark, Sweden, and I see such a different approach to solidarity across the population. They have a will to say, let's lift all the boats, not leave some people behind. And America baffles me because you leave a lot of people behind.
Judson Howe
I would imagine it's pretty similar to the UK, and yet you're saying it's quite different.
Glyn Elwyn
Well, it's more so, I would say. It's that there's a lack of, let's look after everybody here. Insurance coverage is just a prime example, right? In the UK, we've got universal coverage to the NHS. And in many countries that provides a better healthcare system. Here, if you're not employed, you're kind of on your own. And that's tough.
Judson Howe
Yeah. You've spent all this time researching SDM and practicing. You mentioned you were in the dockyards or docklands in Cardiff, which I've never had the pleasure to be in Cardiff before. Give me a story where you used SDM effectively in your practice.
Glyn Elwyn
I think mostly at the time I was a family doctor. I inherited a practice in this poor area in the docks. A lot of people from West India, lots of people from Somalia, many of them from the Horn of Africa after the war there. Their English was not great and my Somalia was terrible. And so we had a tough time communicating. One of the things they expected because of their background and also their previous experience with their previous doctors is that they get a cold they need an antibiotic. I guess this is what I was facing day in day out, and trying to say to them you don't need an antibiotic this is just a cold that's going to go away wasn't working so well. I got into conflict and a previous doctor gave us antibiotics what's wrong with you, you're a bad doctor. And so in a way this idea of let me just explain to you what are the options here. As I saw it there were three. I can give you an antibiotic and you may well see in a few days that this cold or whatever will go away. But it may not have been due to the antibiotic. It just may have recovered on its own. I could not give you an antibiotic, and this probably will go away in two or three days anyway, but you may feel that it would have gone away quicker if I'd given you the antibiotic. Or I can give you a delayed antibiotic, which is, I'll write you a prescription but just wait two days because I think it will have gone away then. So I gave them three options. And I say, the reason I don't want to give you an antibiotic for you to take today is because if I give antibiotics to everybody in this community, resistance will develop to the antibiotic. And this will not work in the future. So let's try and keep this antibiotic for when things are really bad. And in any case, in about 10%, 20% of children who get an antibiotic, they get diarrhea. And that gives them more problems than even the cold that they've got right now. So there was a lot of investment in understanding the options, not saying I'm denying you the antibiotic, but giving them some agency and autonomy in the decision. And a lot of the time people say, okay, then we'll see how it goes. or I'll take the delayed prescription, I'll keep it for two days, and if things haven't resolved, I'll go to the pharmacy then. So that's an example of very simple giving options, trying to inform them, trying to invest in this relationship. Because if you give an antibiotic for every cold, every time they give the cold, they'll want an antibiotic. You're creating a rod for your own back.
Judson Howe
My mind's going to the opiate crisis in the United States. Could what you just described there to better educate your patients around antibiotics be applied to what is seen as drug-seeking behavior in the primary care practices across America?
Glyn Elwyn
Wow, that's such a difficult question. I don't know. It's not my area, really. When you become addicted to medication, that behavior is really complicated, right? So you have to have a contract with people to say, how are we going to wean you off this area? The problem with opiates is how you got there in the first place, that you're taking them so regularly. Once you become addicted, it's a very different problem. So I'm not quite sure I can answer that one for you.
Judson Howe
Interesting.
Glyn Elwyn
Yeah.
Judson Howe
We've been talking about SDM, and mostly or exclusively, we've been talking about the patient bedside and the patient visit. And yet you started to go into talking about communities and communal living. And I think you said singularity before. What did you say? Solidarity. You talked about solidarity outside the U.S. Does SDM scale to the community level as well?
Glyn Elwyn
Well, I think it does, but we haven't seen enough penetrance to see the community effect just yet, right? Because a lot of the resistance we get from doctors is to say, my patients don't want this. They're not used to it. And that's a challenge because if I begin to offer you choices and no other doctor has offered you choices, they begin to think, what a funny doctor that is. Because he doesn't know what he's doing. Right? He can't be very well educated. He's giving me the choice. And the patients at first will say, hey, I'm not here for you to ask me. I'm here for you to tell me what to do. And so it takes a lot of skill to be able to offer options in a way that people trust you. And I think that would be, and it's a very nice saying when I was training in general practice, you end up with the patients you deserve, meaning that you invest in their education so that they understand how you work and what you are prepared to do in terms of giving them the right treatment that's in their interest over time.
Judson Howe
In your experience, as you're driving SDM into your GP practice, were your patients seeing you as less competent or less qualified because you were giving them so many options?
Glyn Elwyn
We had a few of those reactions to say, hey, just tell me what to do.
Judson Howe
Why do you think patients are looking for that? Have we trained them to behave that way?
Glyn Elwyn
Yes. I think that's what they expect.
Judson Howe
So maybe we're largely untraining them with this SDM work.
Glyn Elwyn
We're completely untraining them. And you have to do it with respect, right? You can't just say, what do you want? Do you want A or B? That’s just impossible. You haven't gotten any information. So what you need to do is to say, I'm giving you A and B because I'm really interested in which one is going to suit you best. I know a lot about A and B. I can explain it to you. But then I'm really interested in what's going to suit you and your family. So that's a process and it takes a bit of investment.
Judson Howe
One of the things I care deeply about, Glyn, is having been an executive in rural America, we're beyond crisis when it comes to recruiting, retaining primary care physicians. Some say it's the burnout. Some say it's the value misalignment of the system. I think it's probably all the above. What effect does SDM have on physician burnout if they apply it in their practice?
Glyn Elwyn
In a healthcare system where you're driving doctors to see a lot of patients very quickly, I think shared decision-making can be very difficult.
Judson Howe
Which just real quick right there, that's how most, at least my experience of one, I had 96 clinics. We were seeing 510,000 visits a year. We were paid exclusively on a per visit basis and paying 75th, 80th percentile for physicians in the United States. Some of them were doing $320,000 a year as FM straight out of residency. As a recovering CFO, as I joke, I needed them to be busy to pay for that cost. I would be concerned then about the loss of productivity. I'm deeply concerned as an executive in America about the loss of productivity of physicians.
Glyn Elwyn
Of course you are. And I understand that. But if the system is driving to productivity, many patients seen very quickly, you are not going to get the benefit of shared decision-making. And I kick myself in my career that I haven't really understood the benefit to clinicians of shared decision-making more quickly. So I'm going to take a bit of a digression here and explain that to you. I've just finished a study with about 24 champions of shared decision-making. So these are people, doctors now, who have really said, I'm invested in this idea, I'm doing it in my practice. They're active clinicians, not academics, although some of them do a bit of teaching. And these are from 10 countries in about 12 different specialties. So I interviewed them and I asked them the question, what benefits do you get from doing shared decision-making with your patients? And the results have really surprised me. Some of them, as we've mentioned, mentioned the consequences of doing shared decision-making, right? People are more satisfied, they make better decisions, better decisions aligned with their preferences, and they get to better outcomes. So they know all that and they say, I feel good about that. As a doctor, my patients get better outcomes. That's great. They also say, it deepens my relationship with my patient. I get a lot out of that because these patients are more loyal. They come back to me. They trust me. My reputation grows in the community. That's good. They also say that their teams are beginning to pick up on it, and they work better as a team, the nurses and other people around them. But what surprised me more than anything is that they said, my professional self-esteem goes up when I do share decision-making well. They feel better about themselves as clinicians. And they also said, it protects me against burnout. And they also said, which surprised me a lot, I think it defends me against moral injury. And so I'm kicking myself that I didn't realize this before because the way I've been training clinicians about shared decision-making is to say, hey, you don't communicate so well. Hey, you don't do patient-centeredness so well. I shouldn't have been doing that. I should have said, let me try and explain to you some of the benefits to you of doing this well and to your patients. And then they would have said to me, talk to my chief executive, my chief financial officer or my chief operations officer because they're on my back to see how many patients a day.
Judson Howe
10 in the morning, 10 in the afternoon.
Glyn Elwyn
Right. But you as a system leader need to understand that if you're going to have a workforce that survives, you need to change the incentive system. You don't need to drive them. You need to give them more time to invest in these relationships. And you need to change the financial system that has driven you to this hamster wheel.
Judson Howe
So I'm hearing you tell me that as an executive, I actually need to support my physicians with a potentially longer visit to reduce their burnout.
Glyn Elwyn
Yes.
Judson Howe
But the reality is in rural America and many parts of urban America, because the physician crisis has become so bad, the shortage, the community members are begging us to create more access.
Glyn Elwyn
I understand. I understand. And as you drive them harder, the less people will want to work in your system. They will burn out and they'll go away.
Judson Howe
So I'm hearing you say that we're actually pushing the wrong direction on this leverage point.
Glyn Elwyn
I think if you, back to my point, all the money gets spent in the decisions that the clinicians make with that patient. The issue about the workforce numbers and driving them to be more efficient is a problem the system has created, in my view. Now, is there a need for more visits and more referrals and more tests? I'm not quite sure how to solve that, but I am convinced, I think, that if we made more investment in the right decisions at the right time, the cost to the system overall would level out.
Judson Howe
Let's make this personal. So you're CEO of a health system that has an average wait time of 120 days to get into see primary care. What are you doing to support primary care?
Glyn Elwyn
What's driving that demand? I would begin to analyze what's driving that demand and also understand is that, is the system creating its own demand in some way? Is it driving unsatisfied patients who don't have autonomy, who are really anxious, and need to have this kind of visit after visit after visit. So something is driving this demand. Maybe it's the income, because if you set up a system that says, I need to see you every few weeks to check your blood pressure, to check whatever, to take another test, you are driving demand inside the system, maybe in order to create the income. If you create more autonomy, more agency, and better decisions, you may see the demand side coming down. That's just a hypothesis, but there's something really odd about a system that has to deal with this access issue and poor decisions at the same time.
Judson Howe
You've hit on it, but I want to pull it out a little bit clearer. In my mind, I've been focusing on primary care. Drawing out, does shared decision making also apply to work well in a specialty or procedural space as well?
Glyn Elwyn
Extremely well in that space, because these are high-cost complex procedures usually that are not often what the patient is looking for when they're fully informed.
Judson Howe
Where are you going next with this research?
Glyn Elwyn
One of the challenges that I've faced over the last decade or more is the implementation of this approach into practice. And I'm beginning to feel that trying to implement this approach in a system such as you've described which is driven by volume, is an impossible task. So I'm not sure where I can go. I'm applying for research funds, trying to get implementation studies done. I'm not working with any healthcare system that really wants to do this. I wish they would come to me and say, how can we do this, right? But they're not. I go for research grants. One of the things that I will do from the next few years is to talk to more doctors about the benefits to them, and try and find, maybe with your help, some chief execs and say, let's give this a go. Let's try something different. Let's try and reduce demand so we make more time for our clinicians. And we drive them less hard and give them more opportunity to become more self-fulfilled as clinicians, knowing that what they are doing is not betraying their values, going too quickly, making bad decisions, spending too short a time, not being curious about the person they've got in front of them.
Judson Howe
I asked you what you would do as a CEO of the health system, but I want to ask it a little bit differently and reframe that. You're Secretary of Health of the United States. How are you going about rolling out co-production SDM in the United States?
Glyn Elwyn
I would ask a lot of patients, do you think that a clinician who explains things well to you, who really listens to what you want, and together you're making a decision in your best interest, is that the kind of healthcare you want? I would guarantee you that most people would say yes. And I would say, okay, how can we design that system? It probably requires a lot of different measures, measuring things that I've tried to bring to my research, right? To what degree are people sharing reasonable options with patients? To what degree are they really paying attention to what matters most to them and their family? And how can I finance a system that pays attention to that? It probably needs everybody to have insurance. It probably needs everybody to have a good family doctor. And it probably needs specialists who are not driven to make a million dollars a year.
Judson Howe
That's going to be hard.
Glyn Elwyn
I know.
Judson Howe
What questions have I not asked you that I should have been asking you while I've got this time?
Glyn Elwyn
You've asked me a lot of questions.
Judson Howe
I have. I've skipped a few, too.
Glyn Elwyn
So I would probably ask you to say, why are some countries doing so much better with much less spending? America is spending more than any country on Earth on healthcare. Their life expectancy is going down. A good percentage of Americans don't have health insurance. This is crazy.
Judson Howe
Is health insurance the same as healthcare?
Glyn Elwyn
No, no, not at all.
Judson Howe
Through this project, some have identified that we've actually made things worse by giving people plastic cards without looking at the access points and the supply side of clinicians. Maybe not worse, but we've almost created this new tension point in the system where now people have an insurance card, but we haven't invested in the workforce, and so that's been fascinating through this process.
Glyn Elwyn
But the workforce I think needs to be really given the opportunity to act as health care professionals, to be the ethical health professionals that they went to medical school to be. That's been driven out of them.
Judson Howe
Actually, my mind's going to take from this conversation how you said maybe the system is creating its own demand cycle. And that demand cycle may not be aligned towards health. It might be aligned towards something else. And maybe there's fragility and scarcity being created inside of there.
Glyn Elwyn
Yeah. And you know, I've been in this country now for 12 years, right? But I'm scared about being in this country for the next 10 or 15 years.
Judson Howe
I'm going to ask you more specifically, where do you think is a very powerful leverage point, a place where in the American system that we could all push to make a big impact?
Glyn Elwyn
Leadership, wherever that might be. And it's going to take brave leaders to say, if we carry along this way, seeking what Elliot Fisher calls the most extractive industry in the US, right? It's extracting money out of the population because we're up to 18% GDP. It's extracting money out of the system. That is not going to give people good healthcare, never mind good health. So it needs leadership at the executive level to say, let's go in a different direction here. Let's look after the workforce in order to look after the patients.
Judson Howe
Let's say we're having this conversation in three years. What's the single metric that you and I could look at to say, we've really moved the needle in the last three years?
Glyn Elwyn
I would suggest that the metric would be that you've got some health systems paying attention to some of the things that we've talked about. Some healthcare systems being redesigned in order to look after the workforce that are aligned with the patient's interest.
Judson Howe
Beautiful. We've been asking our guests to leave us a question for the next guest. And without you knowing who that person is, what would you like to ask them?
Glyn Elwyn
I guess I'd like to ask them if they agree with me.
Judson Howe
Is that important?
Glyn Elwyn
Because I'm on a limb, right? I'm a bit of a lone voice, I think.
Judson Howe
Why are you a lone voice on this?
Glyn Elwyn
Well, yeah, that's why I'm asking myself a question. I'm not completely alone. There are quite a few clinicians that are coming along. But in terms of the generality of clinicians, I'm a bit of a lone voice.
Judson Howe
I will tell you, someone said there's a difference between trailblazers and leadership. And then, of course, there's followers. But if leadership is taking people down a trail, trailblazing is building the trail that doesn't exist. So Dr. Glyn Elwyn, I want to thank you for doing the work that you're doing. It's making an impact. And thank you for building that trail.