Helping Patients Make Those Critical Healthcare Decisions
Glyn Elwyn is a clinician, and researcher at The Dartmouth Institute leading an international interdisciplinary team studying shared decision making into clinical settings, which include collaboRATE, a patient experience measure of shared decision making, and Observer OPTION-5, for use on recorded data.
Glyn was previously Professor of Primary Care at the Swansea Medical School (2002–2005) before being appointed Research Professor at Cardiff University where in collaboration with Professor Adrian Edwards, he led the Decision Laboratory. In a lifetime committed to shared decision making and evidence based medicine, he also developed Option Grids™ patient decision aids, licensed to EBSCO in 2017.
He holds chair appointments at the Scientific Institute for Quality of Healthcare, University Nijmegen Medical Centre, Netherlands; UniSante University in Lausanne, Switzerland; Cochrane Institute for Primary Care and Public Health, Cardiff University; and at University College London.
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” I want to know what makes you tick, who is in your life, what do you value, what brings you joy. Unless I make that personal connection with you, you’re not going to share with me what you really feel and, think.”
You’ve had the fascinating career, from Wales to the US, via Nijmegen, London, and various other academic institutions. Tell us where it all began.
Glyn Elwyn: I guess it began in North Wales, the Conwy Valley in Snowdonia and I grew up on a farm, so that’s where it began. At school I was really into biology and chemistry and I had a home laboratory and, because of the ether on my shelf, I was involved in a fire, went to hospital and all that. I gave up science at that point because I thought- Oh this is a dangerous thing. And I did an Arts degree. I studied the Welsh language and theatre at Bangor University in North Wales. And then I kind of regretted that and said to the Professor of Welsh at the time, “You know, maybe I’d like to go to medical school.” So that’s a bit of a complicated story but I ended up in medical school in South Wales.
DMacA: You went to medical school, trained in general practice and then you followed an academic general practice career…
GE: That took a little while. I was working in the docks in Cardiff, in what used to be called Tigers Bay, where there was a West Caribbean population. The homeless were there, the drug users were there, and people from the Horn of Africa, Somali families, who came after the war. So, general practice in a deprived area. I got into teaching general practitioners, doing what was called continuing medical education, CME as it was called. Then I did a Master’s in Medical Education, and I thought I liked writing for some reason, and the more I did of it, the more I liked it. And that led me to a PhD with Richard Grol in Nijmegen. He was a wonderful mentor and I still have lots of contact with Richard. That was the step that took me to academia.
DMacA: That was a big international step at a time when most people did their PhDs locally so you had a pretty international perspective even at that stage.
GE: The Dutch PhD is by publication, where you put together five or six papers published in peer reviewed journals and you then defend them publicly. I liked that idea because I had no papers when I was starting. I was in my 40s, I had no papers, no publications and no research background. So that gave me a good foundation in how to write a paper, how to collect data, how to do research. That’s where it all started with Richard Grol’s mentorship.
DMacA: You’ve done your PhD and then you move into a chair. Tell us about that progression.
GE: They were setting up a new medical school, a graduate medical school, in Swansea. I was there with Adrian Edwards, a lifetime colleague of mine. We went there for a couple of years, and I was invited back to Cardiff to have a chair there, the distinguished research chair at the time. The opportunity came to go to Dartmouth College in the US for a secondment. And I said, “Well, I’ll go for two years.” But, wouldn’t you know, that two years changed into more than a decade. I managed to recruit some postdocs and other good people, and I didn’t want to abandon them after two years, so I stayed. That’s where I am now.
“The opportunity came to go to Dartmouth College in the US for a secondment. And I said, “Well, I’ll go for two years.” But, wouldn’t you know, that two years changed into more than a decade. I managed to recruit some postdocs and other good people, and I didn’t want to abandon them after two years, so I stayed. That’s where I am now.”
“Unleashed” a podcast hosted by Glyn that challenges every clinician listening to ask themselves…What would I do if I were unleashed? What would I do if I could reinvent care from scratch? The podcast also calls upon health care executives, thought leaders, and policy makers to do more to support innovation on the front lines.
Most episodes spotlight clinicians who have developed a new model of care. Occasionally, hosts Glyn Elwyn and Chris Trimble interview experts on innovation in health care delivery. Access the Podcast is here: https://www.unleashedpodcast.org
DMacA: You quietly said you moved to Dartmouth, but that was a fascinating move. Tell us more about that, the people that you met, what inspired you to change careers?
GE: I didn’t carry on doing clinical medicine because it’s a big uphill journey to become a doctor there. So I didn’t do residency there.
The reason was that Jack Wennberg was there. He was the pioneer in medical practice variation research. Elliot Fisher was there as was Gil Welch. There was a really strong group of pioneering thinkers in shared decision making and in practice variation. And it was attractive to join them. And there were also people there from Boston, like Al Mulley and Michael Barry who was connected with Al Mulley. There was a very strong group around this concept called shared decision making. And I was asked to join a unit that wanted me to build up a research group on this topic of shared decision making. Jim Kim was there as a president at the time before he went to the World Bank. Suddenly I was in the middle of these, what I considered, academic giants in the field. I felt it was an opportunity that I couldn’t turn down. That was around 2012 and I asked myself – how long am I going to stay here? I managed to negotiate a budget to bring some postdocs there, and I managed to find some good people from Australia, from France and from Ireland to join me. And that was new for Dartmouth, to have a gang of people with an international feeling about them. And I think we did okay. We won some grants and so on.
DMacA: Tell us the different steps where you began to expand this shared decision making idea.
GE: I have to give credit to Al Mulley who came to Cardiff, to the Welsh Office, before the Assembly was even born. It was in late 90s. He was talking about decision aids and some tools they had built to predict risk and to share decisions with patients. This was a new idea for me and for many doctors, I think. I looked into that and began to work on it in Cardiff. I took the idea to Nijmegen, to Richard Grol, and we looked to see- can we measure the degree to which clinicians are offering patients choices, talking to them about which of these choices are good for them, which ones they prefer.
We carried on that line of work and I managed to recruit, as I said, some good people as we began to build more decision aids called Option Grids which are tables that basically list the options and ask you 6 or 7 questions about what’s involved, what are the harms, what are the benefits, and what are things do you need to know before making a choice? Those tools have given me a lifetime in research because we’ve evaluated whether they work or not.
DMacA: Let’s talk about those decision aids because they are very clinically orientated and help people make up their mind about management of breast cancer and various other conditions. Take me through those various steps.
GE: In Cardiff I was building one of these tools with a colleague on prostate PSA testing and also on breast cancer. It’s a big decision aid with lots of content, and it was web based, and we analyzed which bits of the web based tool people were spending time on. There was lots of text, lots of content, lots of things to read and if you read the whole thing would have taken you a good half an hour at least. We noticed that most people were going to a table where we would ask some questions and put the options on the top row. That’s where they were spending their time. They were doing these trade offs and comparisons. So, if that’s where people are spending their time, maybe that’s what we need to develop and we don’t need all this writing, this content. And I think it’s proven to be true that, if you’re trying to do this within a healthcare encounter or consultation, you need something brief. You can give things for people to take home and read but what they really want is a conversation with a clinician who knows what they’re talking about, the opportunity to ask questions and to try to collaborate on these tough decisions. So we made more of those tools and begun some trials. We found that they were working, people like them, doctors like them. Junior doctors liked them very much because they gave them lots of evidence based information, very quickly, summarized in a way that they could understand and then translate into their patients understanding. Even now, we’re still working on these tools and what we’re discovering is that, even though they are brief, there are a lot to digest within a single visit. We’re working on trying to get these tools to patients before their visit so that they at least understood the choices, the main issues. And what we’re finding is that, if you manage to get these tools to patients before the visit, the visit becomes even more efficient. They start from a better place, they’ve got a better understanding, they ask much better questions, and the clinician doesn’t have to do all that work of talking. They can just respond to questions and in some situations it saves time. It’s preloading the patient with a lot of information, and in the current healthcare environment of being efficient, it is something to strive for. All to say, however, the tools are only one small facet of a better conversation.
In my view it takes a lot of skill to do this well and I’m working with people like Pål Gulbrandsen in Oslo about what are the essential communication skills that mean you should slow down and listen more rather than talk more? It’s very difficult for clinicians to do that.
DMacA: You’ve come to an area that’s particularly interesting and that is, how can we widen our perspective from simply thinking as clinicians to thinking in the other dimensions of communication, because you’ve also done work on the psychological readiness.
GE: I will mention Pål Gulbrandsen from Oslo again as he is probably one of the pioneers in studying linguistics and the psychological nuances of communication. He’s got a lovely metaphor to describe how, if you’re dealing with somebody where the information is new – a patient with a new diagnosis or you’re giving them a problem to solve such as what would be the right thing to do here, what’s the decision? If you’re giving information, you need to give it slowly and check. So, the metaphor is of giving a child some food when they’re not yet able to feed themselves. If you give them a spoon and they take it, you need to pause before giving the next spoon. Time to digest. This is the processing time that people need for processing information. Cognitive processing. And there’s a book that he recommended to me “How we talk”. And he talks about the gaps between questions and answers, leaving a gap for people to digest, absorb, and then respond. The micro details of conversations. If you keep talking, people are not going to engage into what I call a psychologically safe space to work with you.
DMacA: I was interested in this business of the psychological readiness to think about the decision aids.
GE: I’ve been talking to people like Alf Collins about this issue. I developed a model called the Three Talk Model and categorized shared decision making into three forms of talk; team talk, option talk, and decision talk. The team talk is what you are referring to about this psychologically safe space so that people can generate quickly enough, compassion, trust, empathy. Even though you’re asking them to do something new and difficult, involve themselves in the decision, they feel able to join you in that process.
That’s what Amy Edmondson called a psychological safe zone. Where I feel I trust you enough to ask you questions and even to disagree with you a little if my priorities are different, if my views are different to your views. We showed, actually in California, that patients are very hesitant to disagree with their clinicians.
GE: I’m here in Denmark, actually, updating the three talk model. And the metaphor I’m using is to think of a safe where you keep your most valuable things. There are keys to that safe, that clinicians can use. I think its something like this although I’m not quite sure yet of the exact keys to this psychologically safe space where patients feel free to talk, but it’s got to involve something like curiosity- I want to know what makes you tick, who is in your life, what do you value, what brings you joy. Unless I make that personal connection with you, you’re not going to share with me what you really feel and, think.
Competence is another. You need to trust that I know what I’m talking about. Because for many patients, if you say – we’ve got a choice here- they think, what a strange clinician that is giving me choices, they don’t know what they’re doing when, actually, the reverse is true, the clinician knows a lot about those choices. But most patients expect the clinician to tell me what to do, not to give them problems.
So its about creating the atmosphere that we’re working as a team to solve this issue together I will never abandon you to make this decision alone. That’s a key step.
Curiosity, compassion, empathy, kindness. These are a lots of the keys that open this very complicated safe space.
“Curiosity, compassion, empathy, kindness. These are a lots of the keys that open this very complicated safe space.”
DMacA: You’ve worked in the States, you’ve worked in the UK and also in the Netherlands. My perception, and that may be completely wrong, is that the communication within clinical practice is very different. Is that true in the shared decision making?
GE: In the United States they do a lot of the communication standing up and walking around, which I think is not ideal. Right. You walk from one room to the next and see patients while you are standing up and they’re sitting down. I don’t think that’s ideal in my view. I’m a family doctor. I’m used to sharing a corner of a desk at least. But the patterns are very similar and we don’t see much shared decision making in most recordings that we do. I’ve worked a lot with recordings and we don’t see team talk. We don’t see people saying- here’s what we’re trying to do, and I’m going to work with you as a team.
We do see more option talk, giving people choices. What we don’t see is curiosity about patients’ views. For example, I’ve told you about options A and B and C. Now, I want to know how you react to those. And have you got any questions? I’m interested in your priorities, views and preferences. And then I need to shut up, to stop talking and give you a chance. And, I probably need to stop talking for a few seconds at least, maybe more, because you are not going to be comfortable speaking to me unless I give you a lot of space and a lot of support and psychological safe ground to walk on. And even though we see slightly different patterns of clinicians talking in different countries, we don’t see team talk and we don’t see decision talk with our preference elicitation. Clinicians are blind to these two ways of talking.
DMacA: When you said that clinicians are blind to talking, that’s a nice way to move on to another area I’d like to ask you about it. We’ve talked about shared decision making in clinical practice, but are these concepts used in other spheres, are they used in industry, and have you have you moved outside the clinical sphere with shared decision making?
GE: Not really. Psychotherapists use these techniques. Psychologists, clinical therapists, clinical psychologists and therapists, they do use these techniques of echoing, giving you time, pausing, being really curious about you, building up the psychological space. Do other industries to this? Well they don’t do it in this very detailed way.
But it’s interesting that in the financial industry, if you go for financial advice, the first thing they will ask you is about your priorities in life, what are your values, are you a risk taker, are you risk averse, what are your future goals for the next five years or ten years?
So they will make a point of doing what many people are missing in the three talk model, which is goal setting. What goals do you have? What are you trying to achieve? And goals I think are really complicated. I wrote a paper a few years ago with a colleague from the Netherlands splitting goals into ones about dealing with symptoms. For example, I’ve got a headache. I want to get rid of this headache. In terms of function. I got this headache, I can’t focus, I can’t concentrate, and then, in terms of fundamental goals. – I’m trying to write a book and I can’t focus, I can’t concentrate, I can’t write this book, which is really important to me. So, goals are at symptomatic function and fundamental levels. Trying to extract those from patients is difficult, especially the fundamental ones, because those are the things that people hold very dear and often very private.
DMacA: So let me finish off by reflecting these concepts back to you and ask, what are the five year goals for Glyn Elwyn?
GE: I don’t know. It’s probably time I retired, but I don’t really want to do that. I don’t think I’ve finished my work. If I get closer to what I think is moving these ideas into practice, I might give up one day.
DMacA: Glyn, it’s been fascinating talking to you and I’ve just thoroughly enjoyed watching your career. Thank you very much for talking to us today. It’s been wonderful.
