KERCasts

Purposeful shared decision making - the right tool for the right job

November 05, 2020 KER Unit Season 1 Episode 5
KERCasts
Purposeful shared decision making - the right tool for the right job
Show Notes Transcript

“Regenerative medicine” often brings to mind the high-tech world of stem cells and tissue engineering. In this KER Cast, Dr. Ian Hargraves, a designer and shared decision making researcher at Mayo Clinic,  joins Dr. Victor Montori to outline a novel conceptualization of “regenerative” care: one that shifts the focus from restoration of the body itself to the regeneration of patients’ lives, capacities, environments, and relationships. Join Drs. Montori and Hargraves in this sweeping discussion of human-centered design, pipe organ building, and the underlying philosophy of “people matter” that drives Dr. Hargraves’ in his work. 

Victor Montori:

It is time for the KERcast brought to you by the Knowledge and Evaluation Research unit at Mayo Clinic. I am your host, Victor Montori and today, we have a treat. Ian Hargraves, Dr. Ian Hargraves, originally from New Zealand is with us today. He's one of the most consequential minds in healthcare today, in my opinion, he is bringing a completely different way of thinking about care, and some aspects related to it in relation to shared decision making and regenerative care and I'm hoping that today, we will touch on all those issues. Ian has a master's degree and a PhD in design from Carnegie Mellon University in Pittsburgh, here in America. And he's been working at the KERunit, understanding the ways in which shared decision making varies, and how it can be supported across a range of patient problems and situation. And more recently, has been working also on a new way of thinking about regenerative care, as I mentioned before, Ian it's a, it's absolutely wonderful to have you today in the KERcast. Welcome.

Ian Hargraves:

Thank you. It's always a pleasure to talk with you. And thank you for everybody for joining.

Victor Montori:

Excellent. As with all these series, Ian the first question that I would like us to explore is, how does one become Ian Hargraves?

Ian Hargraves:

That's a tough question with no simple answer. But, let me take a crack at it. As you mentioned, Victor, I'm from New Zealand. I was, I lived and grew up in a relatively small town of 30,000 people an agricultural port, by the name of Timaru, quite remote from the rest of the world in many ways, in fact, you and I essentially grew up as neighbors, in that you were just on the other side, if I looked out of my kitchen window across the Pacific Ocean, I could practically see your house just over there in South America. I'm one of five children. I had the good fortune of finishing high school to apprentice as a pipe organ builder. My father is a pipe organ builder, and I joined the company in which he was a director, and in apprentice there, I worked in that company for about, I don't know, seven or eight years in that period with, with various intervals beyond that. That was a, that was a wonderful experience. And in many ways, may have contributed a lot to who I, who I am and, and how I...

Victor Montori:

In what ways. I mean, I can't, it's not obvious I think the connection between pipe ogran, is it, was it building or is it fixing and what you do now?

Ian Hargraves:

So so it's a range of things. So it was pipe organ building, restoration, repair, tuning, maintenance, design, rebuilding, many number of things...

Victor Montori:

And what's the connection with, with what you did today? It's a, I mean, it's, it's beautiful work. But is there an obvious connection?

Ian Hargraves:

Well, I think, I think, like many of us, our paths are windy and take us through territory that couldn't necessarily have been predicted going forward. But I think themes and connections can be traced backwards retrospectively that, that, that connect and, and I think I tell my own stories in that way. I think the nature of the instrument, the pipe organ, which, which for those who aren't familiar is a large musical instrument, commonly found in churches, certainly in, in, in Europe. And much of it, it has a longevity which is human in scale, or longer...

Victor Montori:

What do you mean by that?

Ian Hargraves:

So when we're creating instruments, we expect that instrument will be living, alive for at least the length of our lifetimes and in many cases, much longer. Each instrument is an individual. So it's, they're not mass produced. Each one is designed for its base for its, for its community and the like. So it has that individuality in common with with patient care. There are other points of connection, I guess is often termed, described in physiological terms as having lungs, breathing, and having touch, essentially ligaments and voice. So there's definitely connections...

Victor Montori:

And your your job as an apprentice interacting with this, I presume, gave you an opportunity to participate in the, in, in this shaping of the pipe organ to its future location or a future situation? And to help it express its voice?

Ian Hargraves:

Yes, no exactly. Exactly that the work of making it an individual. Bringing its potential forward, helping it contribute to the congregation or the people that it was serving.

Victor Montori:

Yeah, there's, there's an interesting connection there with, with care, which is, of course, the focus of your work now, in that one could imagine patient and clinician working together to help fashion a patient's experience or a patient's life in which health and healthcare play a supporting role in human flourishing, I suspect that, that's a potential connection there.

Ian Hargraves:

Yeah, no, no, exactly. I think some of the work, particularly in the regenerative space, and even in the shared decision making space is really focused on how we build and create, and people's lives. So how do we make something that we can call care or a contribution of medicine that, that lives in the lives of people, helps reshape, rebuild, maintain, restore, all these, all these words, which were part of the practice of organ building, also very much themes in medicine and in care.

Victor Montori:

So you end up with the masters and a doctorate in design. Were you able to bring those, those themes of designing into, into, into care, because the first time you and I met you were going through that program of study, and we were at Mayo, developing the first design, you know, in house design capability to focus on the experience of, of healthcare and healthcare service, and, and you came to visit, and you were doing that work at the time. So that, was that the doctorate work? Was it to bring those two strands together care and design?

Ian Hargraves:

Yeah, so that that was the focus of my, my dissertation is what is the relationship between these two, apparently very different disciplines in, in reality, very different disciplines, but which had the similar sort of thematic connections that, that I mentioned previously in relationship to pipe organ building. Looking at the idea of human centered design, which was really the approach to design that I was educated within. The idea that the purpose of designing is to support the lives of the people that we're creating for. It's less to express the vision or the will, of the design, although that is an important part too, but really asking questions around what it is to be human what to do is to make and create within a human world and always serve, serve people and honor their dignity.

Victor Montori:

That that's a very different at least different sounding explanation of what most people will think about design I mean, the way design has been popularized, it is through the design of beautiful objects and useful objects with which we interact on a day to day basis. And one could argue not all of those objects are designed with a purpose of making our lives more dignified or better. But sometimes it's an expression of a brand or it's an expression of, as you said, the, the artistic creativity and vision of the designer, so so is this, is this a different way of thinking of design than what has been popularized in the last I don't know, 20-30 years?

Ian Hargraves:

Yeah, I guess so. I think, I think the theme has been there, if you go back in history, as well, that there's a lot of creating the world around us in ways that help people be who they are, give expression to that, and the like. But certainly in the, in the 20th century, when the word design really emerged, in a professional context, a lot of the, a lot of the associations are with the beautiful objectand the like.

Victor Montori:

The I think we've talked in the past about a, oftentimes when we interact with design, and with designers, the nature of the problem itself gets often taken to, modified to meet the the abilities and the skill set and the discipline of design itself. So that when designers may start with a problem and come back with a solution, that it's a great, great design, but it may not actually solve the initial problem that was formulated. And you've had a bit of a critical, critical sense of that, of that way of designing right?

Ian Hargraves:

Yeah, and I think it's an issue in all disciplines, that what we end up doing is very much matched to our skill set whether our skill set as the right tool for the job or not. And certainly its no less true in design. But design consultancies often, often have a way of doing things or the kind of thing that they make. And and, and there's a certain amount of repetition in that work. And there's good reasons for that it sort of connects to the theme of efficiency that you've talked about before. And there are benefits to efficiency, but it can run away and leave. Go off the rails, I guess.

Victor Montori:

Yeah. So it's interesting, because it forces that the eye, it turns the gaze from the, what is designed, the object or the service or the experience, to what happens to people and and in relation to that design. How is that design affecting people? And so that leads me to ask you, what's been the primary value driving your exploration, your career, you know, from the agricultural port to to the Mayo Clinic?

Ian Hargraves:

Yeah, so, this question has been on my mind, because I knew you were going to ask it. And I don't know that I exactly have a simple answer. I think the answer that I have sounds simplistic, which, which would be the idea that, at some fundamental level, people matter. And we live in a world in which people matter, and who we are, what we create, how we relate to other people are expressions, expressions of that, and all the other values that we might name flow out of that simple idea. If people didn't matter, there would be no, no justice, no generosity, no patient centeredness, no integrity, all of those concepts or values simply don't work unless, unless at some fundamental level people matter. And so linking it back to the work, I think that we do in the KERunit and design. Again, I had the good fortune to spend some time with people who have a connection to philosophy and so I turn a small amount of my attention in that way. There's a guy named Richard McKeon, who was a mid 20th century philosopher at the University of Chicago, heavily, heavily important in the ideas of pluralism. And he had, he had an observation or a claim ideas that he said that truth something like truth may be one but it is not given or it doesn't have one expression. So if we relate it back to the simple idea that people matter, if that's a truth, or is a unity then, it has no single, no single expression and so medicine explores it, design explores it, pipe organ building explores it. The way we live with our family explores that expression, expresses it and the like. So I don't know that I have any one single value, principle that I pursue. Similarly, I was just looking this morning and the, I recalled a phrase from the Irish poet Seamus Heaney and he closes the address that he gave, when he was accepting his Nobel Prize, with the idea that we are hunters and gatherers of values. And I think that's, that's a very nice way of thinking about what it is to interact with patients, to learn from them, to grow with them. As designers, the idea that the values aren't out there and we pursue them, but we gather them and give them expression.

Victor Montori:

It's a facinating view of that, isn't it? Because, you know, as you know, we are quite interested in this notion of seeing patients in high definition. But it now occurs to me that an expression of that is almost to uncover their truth, that is the expression of their truth, or the expressions of their truth, as we interact with them, and in the process, perhaps gather values for a better living. And so that puts people who care as learners and learning from those who are receiving that care, and I presume it's a bi-directional process it, that's a, it's a lovely idea that connects with the, I think principle of generosity that our unit has in terms of offering and picking up, you know, from, from others. And in that way, I mean, the unit has talked about patient centeredness and integrity and generosity, any of those three values that the unit has, resonates stronger with you.

Ian Hargraves:

So I think almost everybody in the series has identified generosity, and that's the one that would that, would leap to my mind as well. I think it's perhaps closest to how we relate to people in terms of our spirit, intellectual curiosity and the like, I think a lot of possibility opens up with, from generous views of who people are, what the world can be, and, and where we, when we, where we direct our effort in care.

Victor Montori:

Yeah, well, you've been particularly generous I, you know, I've been reflecting on, on my own language, and how I speak today about care, which of course, is my fundamental activity as a physician, that I find myself drawing more of the language that I use to describe that, that daily activity from my interactions with you then I believe, I am drawing from the traditions of medicine itself. I'm talking about mostly the biomedical model. And, and I think that's been an expression of your generosity. You and I joke occasionally that I, well it's a, it's maybe I'm joking, maybe you're not joking, but I, I often, I often laugh or smile when I point out that I give a lot of talks and most of the time what I'm saying to audiences is what you said to me and it's a, I've always been very proud of representing your thought, it to the audiences that that invite me and I presume I've been quite liberal with owning your language and the ideas that you've offered me so you know, that is, I am very, very, very grateful for your generosity in, in both helping me see different ways of thinking about care, but also giving me language to express those new ways of thinking and doing that are now essential to my understanding of the world of care. So you've obviously embodied the generosity principle in ways that are quite extraordinary. So I have to thank you for that.

Ian Hargraves:

Well, thank you, you're always very generous with your praise and your comments along these lines, and I feel myself left blushing, and without much to say in response, but...

Victor Montori:

I presume, you know, most of the people interacting with this KEERcast will do it through the podcast. So you know, we'll have to describe the blushing to those people who cannot see the video. But no, it's a lovely thing. So, the, one of the things that you have told me is, is about the way in which people live their lives, and how, how that living of your life, that how the life itself and the living of that life can be affected by disease, can be limited in some way. And, and you find it important to not only, you know, make something to make that to make that better, but to put it to the, in the service of people living their life, and so forth. And, and it, I presume, it has to do with, again, going back to the pipe organ, is that, you know, a pipe organ could be a beautiful instrument with an incredible and very personal voice, you know, drawing from what you said at the beginning. But it only comes to serve its purpose, when it's when it's able to sing in a service, you know, in a church service, or in a funeral or in a wedding, in the gathering of people. Help us understand how is it that helping people serve their purpose is an important part of care.

Ian Hargraves:

So there's several ways to pick it up. Maybe I'll go back to the pipe organ again, as an analogy and explore those connections. So as I suggested, the pipe organ is a very complicated instrument, there's a lot going on mechanically, pneumatically, sometimes, electrically, with within that instrument, it fills a large volume, and there's a lot of connections made. And so there's sort of mechanical care or carefulness that goes into getting that part working. And I think that technical side is very prevalent in medical education and medical expertise today. But that view of the pipe organ while important, you can make something technically perfect, but without somebody to play it, it sits there gathering dust and and so another another important part of the pipe organ is the ability to give expression to the people who are playing it, draw out their virtuosity both as players and as audiences receivers or partakers in that artistry. And I think there's a lot of virtuosity in caring relationships as well, the way that we bring forth our spirit, both as patients and as clinicians...

Victor Montori:

Virtuosity in patients?

Ian Hargraves:

Yeah, no, I think so. So I think this speaks to the relationships that people form, how they find who they are in relationship with the people in the room whether they are patients or clinicians a lot creativity in that work. A lot of finding language, communicate, and the like. So so I think that's an important theme as well. But similarly, at the risk of beating this analogy to death...

Victor Montori:

We'll play a requiem for it at the end of it, yes.

Ian Hargraves:

Again, the machine, the artistry is in service of something. So that's why these instruments live in churches, they serve in the grief of people and in weddings and the joy of people and I mean (that was a little bit of a Freudian slip too), the grief of people in funerals and the joy of people in weddings, the day to day celebrations that are part of worship. So it has a role in which service is a very important part, which is really at the core of medicine to that, that you can have. You can have great technical expertise have a wonderful manner, patient centered manner, but unless it actually serves and helps people, in your experience....

Victor Montori:

One of the innovations that you've, that you have put forward has been this idea of connecting an activity or a way of caring, like shared decision making with its, with the purpose, that is a purpose of care. And it seems to me that this, what you just said about what, you know what pipe organs do when they are used and it seems that there's a thread there, you want to tell us a bit more about this idea of thinking about how do we work with patients to co-produce or co-create plans of care? Why did you see the need to go from: Well, this is just one way in which we do it to think about no there might be multiple ways because we might be pursuing different purposes. How did you end up there? How do you, how did you get there?

Ian Hargraves:

Sure. So I think that the notion of Human Centered Design comes in there as well. So that approach has a, has a large concern for humanity of people, the individuality of who people are, or the cohesiveness of communities and relationships. But it also links that to some sort of need, some sort of purpose in the world, and aims to create things that serve people. And so I think in the history of shared decision making, there's been a number of motivations behind it, a large part of it is driven out of the need for patients, the deep ethical need for patients to be involved in their care to have the ability to express their desires, their preferences and wishes. The value of autonomy is highly important there. And I think the field not that it's, it's homogeneous, has largely focused on those issues, which, as I say, are very important. But at the end of the day, we make decisions in health care in order to help people, not to involve people. And, and that we make decisions in response to suffering or problems in the experience of people. And there's a range of different problems that that folks have or look to help for, from health care with regard to and, and the work of purposeful shared decision making, which is really this line of thinking says, okay, the reason we make decisions depends on problems, but also the way that we go about making decisions would also depend on problems. So one of the examples we used is that if somebody is sitting down with their primary care doctor, and they come to the point of view, or the place where they recognize that maybe starting an antidepressant would be a good way to proceed. So there's clearly a problem there. The point of discussion is okay, if we're going to use an antidepressant, Well, which one? So then we might turn to what are the, what is the characteristics of the drugs, their efficacy, their side effects, that intersects with your preferences and sort of use a weighing approach to come to a decision. But if in the similar, similar, if we looked at depression again, and the issue isn't really so much which antidepressant to use, but whether the person wants to be the sort of person who is medicated, or takes medications, or sees medications as a sign of weakness, weighing the pros and cons of the different drugs isn't really going to address that problem. The person has some sort of internal conflict and some sort of way of resolving that conflict is needed to address that. And so we might use a strategy of negotiation or argument, conflict resolution to come to a decision there and, and that method of weighing pros and cons and preferences may have a much more limited role.

Victor Montori:

So there's the connection between the problem you're trying to address and how you address it. And trying to get a fit between the intervention and the problem seems common sensical, but somehow missed. Again, up to, to a great extent up to your contribution on purposeful SDM. So it's an important contribution. The, as we think about the collaborations that have shaped you, because you know, we've talked about some experiences that have shaped you, but I'm interested in knowing what, what's been your best collaboration, what collaborations have shaped who you are, and how, what you do and how you do things today?

Ian Hargraves:

I don't know if there is a best one, because...

Victor Montori:

I know we're just number one, no, but you know, which ones are inspiring or which ones are, or maybe what has been their meaning to the work that you've done?

Ian Hargraves:

So the ones that I get most energized about is the ones, are the ones where there's clearly a problem in people's lives and the people who are on, who are part of a team are committed and driven by that problem. So, it comes to mind the collaboration with the Bjorg Thorsteindottir around chronic kidney disease care for older folks who are approaching dialysis, who many times find themselves waking up in the hospital on dialysis machines without any great preparation, given for that dramatic changes in their lives. Unclear benefits in terms of longevity, that process. And so there's clearly a problem there. Other collaborations, I think, energizing for me are the ones we're pursuing around regenerative medicine, currently, where it's a different way of looking at medicine. Regenerative medicine is commonly thought of as in terms of stem cells and, and very high tech.

Victor Montori:

Very exciting area, you know, with a lot of technology and biological development.

Ian Hargraves:

Yes, no, it is. And, and there's a certain glamour to that work, which, which I think is warranted and very promising. But we are looking at developing a regenerative clinic within endocrinology for folks who have been living with diabetes for, for a long while, clearly, clearly, lots of problems there in people's lives. But in doing so, we're almost reconceptualizing or refocusing what the idea of regeneration might mean, in terms of care, in terms of medicine. And I'm saying that fundamentally, one of the distinctions of a regenerative approach isn't so much that it uses stem cells or cellular products. But that is a medicine that focuses on building on creating things...

Victor Montori:

As opposed to fighting disease.

Ian Hargraves:

Exactly. So. So there's a lot of talk of fighting in medicine. In some ways, it dominates our language. We talk about the battle against cancer, fighting obesity, mitigating behaviors, fighting infections and the like. So it's a dominant orientation. The regenerative approach that we're talking about is saying that regeneration has genesis, generation, at its core. And so it's a creative activity typically thought of in terms of the building or creation or recreation of tissues or function. But it's we're looking extended that idea of medicine building by asking the question, well what's involved in creating in the lives of people, along with patients? How do we build in that context, shifting, shifting the object of care away from disease or, to the lives of people that fundamentally, medicine is contributing to the building of how, who people are and how they live their lives, you know, in a very modest contribution.

Victor Montori:

Yeah. So rehabilitation, for instance, for a missing limb, or for a missing function comes to mind as a as an example of this.

Ian Hargraves:

Yeah, no, very much. So it's, it's involved in creating new capacities, or restoring capacities, often involves rebuilding the environment in which people live, sometimes involves recreating relationships or points of view, our sense of self and the like.

Victor Montori:

Yeah, people have been doing this during COVID in a big way, right? I mean, they found themselves away from coworkers, working from home, oftentimes refocused on the education of their children, children have to learn virtually and their at home, and they have to reinvent to some extent a life under the conditions imposed by this massive effort of, of solidarity in making sure that we can all keep each other safe and so forth. And, and so what I think what you're saying is that, in addition, you know, that will be an example of how, under a change in our context, we've had to re-imagine how do we make, how do we flourish within those constraints. Disease introduces a different set of constraints. But the challenge is similar. How do we build health, from the constraints imposed by disease, is that, did I get that right?

Ian Hargraves:

Yeah, no, I think that's a great analogy and points to the sort of everydayness of this work of adapting recreating our lives in, in response to the environment and what we learned, and who we relate to as we, as we move.

Victor Montori:

It's amazing that you can bring that into, into care, into medicine. How do you identify these areas? You know, how do you, what attracts you to these areas of Oh, you know, shared decision making, too narrow let's expand the scope to make sure it matches the problems? Oh, regenerative medicine. Wow. You know, it seems like it has this incredible potential, but we're only thinking of it biologically. How do you get to identify these opportunities for redesigning healthcare?

Ian Hargraves:

So, so again, I think I would take it back to design, designers, an art of invention, of not only making stuff that we know how to make, but also creating things that didn't seem possible, at some point, and so part of the education that I was lucky enough to receive in design was focused on not incremental change, but how you look at things, from a completely different point of view is not really strong enough but, something along those lines that opens up new possibilities. And so, I think, I think that way of working that says, what would the world be if we looked at it this way and what problems would we see? And perhaps more importantly, what would it be possible to do if we approached medicine, not from a point of view of fighting, but a point of view of helping people build who they are and how they live?

Victor Montori:

It's a bit of a full circle, isn't it Ian, that you start with thinking about how do we redesign medicine and then you are at the point thinking about how can medicine redesign?

Ian Hargraves:

Yeah and importantly, with patients, I think the contribution of medicine is a pretty humble part of people's lives. And I think we need to be careful when we think in terms of redesigning people's lives, it's a little grandiose, but, but I think themes that have been part of the unit for for awhile point in this direction. So the work around minimally disruptive medicine recognizes that when, when medicine, asks folks to do things it changes how they live. So has either, has often inadvertently redesigned their lives whether they want it to or not. And so how do we do it in a thoughtful is an important issue.

Victor Montori:

On that note of this series is called care, you know, it's part of our work on care that fits and what does that mean to you?

Ian Hargraves:

So I think it means several things. And maybe this is an example of what happens when you look at the idea of fit from these different perspectives, or what it could mean, rather than what does it mean. So I think there's various ways of picking up the concepts, each of which point to different interventions and completely different lines of research. And have the possibility of overlapping as well. So one idea of fit is simply something along the lines of are we trying to put a square peg in a round hole? Does it actually fit mechanically or in the processes of person's lives and their context. Another idea of fit, which Marleen Kunneman is exploring, I think quite extensively is the idea of fitting. So we have pipe fitters we go into have out clothes fit sometimes. And there's people involved in doing that fitting work. So what are the interactions between patients and clinicians in which they can engage in, in this fitting work. And so there's a whole line of research there, and possible things that we could do to make the world better? Another another way, picking it up, is to put the idea of fit for purpose. So what we're doing actually fit to the purposes it serves, what role does it have in people's lives? How does it serve their problems, who they are, how they live? And how does it contribute I think there's probably a dominant theme there, is what actually is the contribution of care or health care in a person's life? So is it fit for purpose? And another way of picking it up is sort of through the analogy of is it fit for human consumption? So does it, is it matched to the dignity of people, of their, who they are at a deep existential level? Is it respectful, all these things is it fit for human consumption?

Victor Montori:

It is, one could see that this process or achievement of fit you've connected it back to this fundamental primary value that animates you, which is the idea of people mattering, and how you, how you help people in that process of realizing their, their full potential. This comes in contrast with the ways many of the objects that are designed in our lives seem to be designed to take advantage of the limitations that people have, for instance, the challenges that we all face with our attention and how our smart devices capitalize, and I think that's exactly the word but capitalize on are the challenges that we have with our attention to take advantage of that, to sell us a product or to modify our behavior, right, and that, that doesn't seem to follow the same logic that you are following, which is, which speaks about human flourishing as the purpose of both care, and I presume of careful design. And at this point, I feel like most people that are listening to us might feel quite envious, that I get a chance to work with you Ian where a potential single dimensional aspect of a problem when you, when you approach it and you touch it, you have so many different ways of looking at it that open up the opportunities for both creativity and full potential. And one of the questions that we're getting from our audience today has to do with that is this something that you know, healthcare professionals gain access to by interacting with people like you, or should this be baked into the way we train health professionals should health professionals be trained in the kind of careful design that you espouse? Should that be part of medical training?

Ian Hargraves:

So I think it's part of medicine. And so so probably people who are learning that art and science should have some exposure and develop capacities with it, I think the idea of medicine being fit for human consumption, medical ethics lives their, square pegs round holes. Are we chopping off limbs when we should be giving antibiotics? Pretty basic stuff. The idea of patient centered care intersects very nicely with the idea of fitting and the, the idea of actually addressing problems. Is it fit for purpose is also there in medicine. Now, the question of whether it belongs in medical training is really a question of what's the balance between, between those things, they're all there, they're all important. But if we focus on one, to the detriment of the other, I think that's an issue.

Victor Montori:

But, it will sensitize people, for instance, to some aspects of modern health care, like the notion of guidelines that are not promoted as a, as the basis for sort of minimal performance, but often are put forward as ideal performance, in which essentially, we do approach people, whatever shape they are, with the same round peg or the same, you know, regardless of the shape of the hole we're trying to fit. People will be sensitized to the problems of that sort of approach, by having access to some of the ways that you, that you use to approach those same problems of care.

Ian Hargraves:

Yeah, no, no, exactly.

Victor Montori:

We have another question that has to do with, as you think about your approach to addressing problems in care how do you involve in the description of the problem or in the translation of a potential set of solutions, how do you involve the needs of clinicians, the needs of caregivers, both informal and professional caregivers, face challenges in their work, challenges their sustainability, burnout, is a common problem, for instance, how does that get into your thinking and in the way you shape solutions? What have you learned from your interactions with clinicians you work embedded in a healthcare system? So it must be not only because you can execute on your ideas and translate care, but also because you might be learning from their own practice? What can you say about those things?

Ian Hargraves:

Yeah, so it's definitely a learning experience, I have no background in biology, let alone medicine as I began that work. I think there's a lot to be learned from the, from the experience of clinicians, the stories, they tell of their practices, the relationships they have with their clinicians. And similarly, there's a lot to learn from, from patients' experience, both in their day to day lives, the problems they bring to medicine and how they are treated, for better or worse, from their...I think what I try to do in that space is, is often a lot of language work, which you mentioned earlier, which is, is how do we how do we find the right language, or point of view, that's, that's helpful. So one example of that is work that we did on kids turning up at the ED with ear infections, and helping, helping turn the conversation away from whether this kid should have an antibiotic or not, as a medical dilemma to whether an antibiotic should be administered or not, isn't actually the problem that the doctors facing the problem along with the kids parents is that this kid's been screaming all night, people are exhausted. And that's really what we ought to be focusing on is the object of care not not the infection of the ear necessarily, or the...

Victor Montori:

Not the not infection of the ear, exclusively. I was just saying that, that the problem is not, not just the infection of the ear, but it's also the experience of suffering and exhaustion of the parents as they show up to the emergency department. So, do you feel that an approach to problem solving, a purposeful approach, one of regenerating care is one that, that offers an opportunity for realization or flourishing, also for the caregiver? Not just for the patient?

Ian Hargraves:

Yeah, no, I think that's where I was going is that a lot of the burnout seems to be around issues of trying to put the square guideline peg in the round hole, as you're saying, and and recognizing that it doesn't actually allow you to care for the person, both in the way that you want and in terms of what it is that they really need.

Victor Montori:

We're getting another question that has to do with, well, first an appreciation, the person is saying that, this conversation with you is reminding them of the beauty and importance of caring for patients and finds what you're proposing both amazing and unique, which I resonate with. But the question almost seems directed at me, which is how difficult has it been to try to bring these ideas and this way of practicing medicine, into an environment that the person asking the question described as traditional, and predominantly biomedical, you know, otherwise a model that is focused on fighting disease versus, you know, building health. And I, I'm going to resonate with a little bit of your answer Ian, in the sense that, I think understanding the the language opportunities that you offer us to re-express or reinterpret what's going on, and to reframe what we're doing is very, very helpful. And for me, it's led to, you know, a whole approach, you know, in relation to the work that we're doing with the patient revolution and trying to change the context that this person's asking about a context that might make us feel that we don't have the range of opportunities to work with patients and impact their lives, a range that you are very active at identifying, it's almost like as you are going through, you're you're appreciating the full potential and that gap between what is and what could be is something that animates you and by giving it language, you transfer that, that energy and that creativity to the people who are called to care with a more biomedical approach. Am I saying that correctly?

Ian Hargraves:

Yeah, no, no, I think you, you are, I think that the problems of people and the language that's productive, and actually being able to address that, sometimes by changing the way we think about our practice, care is a large part of what animates me.

Victor Montori:

Yeah. A colleague of yours just resonated as well with me in the sense that it's been very helpful to work with you, and see the connection between other important concepts in these days, such as the concepts of justice and humanity, and how those connect with the concept, the concept of care. And as we wrap up here, Ian and we start thinking about what comes up next, I have to ask you, you know, what, what, what really comes next for Ian Hargraves?

Ian Hargraves:

Lunch. So in terms in terms of, of the work that we're doing, I think the big question that I'm interested in exploring is how do we turn the focus from the outcomes that medicine achieves to the recomposition of people's lives, that care brings forth so how do we even understand, appreciate how people live their lives and who they are, and how it's composed, how it's coherent, how it's well formed, or, or less well formed? And and how will we even know that in the contribution of medicine or any reshaping that medicine's involved in, has actually contributed to the coherence, the aesthetic even, of a person's life.

Victor Montori:

One word that seems absent from your language is the notion of power. And people are asking me, you know, how do you consider power and power imbalances in healthcare. Seems to me as I'm using the word power and emphasizing the p in power, that I'm recreating a little bit of a, of a warzone of a fighting environment, and here you are trying to create and speaking of things that are, what is the role of power in the, in the way you see the world and the way you respond to it?

Ian Hargraves:

I think the way that I pick it up is that there's a lot of interest in power imbalance, and the like, and rightfully so. And there's a lot of energy, focus or conversation, focused in that direction, which is great. At the same time, the conception, or the point of view, of power allows us to do some important things and seek important changes in the world. But it has the potential to obscure other, other important things as well. So I think the work on purposeful shared decision making, for example, brackets for a time, the discourse of power and says, what needs to be done in a person's life and how do we do it together? And sure, solving power imbalances will help that happen. But reconciling those power imbalances by itself doesn't make good care happen. And so if you remove, new possibilities open up, but at the same time, I would say that, I hope, that if the dominant point of view was that we just need to solve patients' problems, that when we take that to extremes, the issue of power disappears and power imbalances. And so I would hope I would turn my attention and say, hey, there's a problem here. And let's look at it from that point of view as well.

Victor Montori:

We're getting a question about a sort of chain of production of evidence where, you know, new insights, new evidence is produced, synthesized they are transferred, oftentimes in guidelines. And then, you know, in the industrialized approach, those guidelines are then turned into the way we treat patients. Where do you think in that chain that you're familiar with where do you see the biggest potential for Human Centered Design? Where should it play a biggest, where can it play its biggest role in realizing Person Centered Care.

Ian Hargraves:

So, I think it involves recognizing what the purpose of evidence is, so in my mind, the purpose of evidence isn't to express biomedical truth that this is, this is the likelihood of this happens when we do that. Neither is it to tell people what they should be doing. Its purpose is actually to be a resource whose potential can be drawn upon as part of the response to a particular person's situation. So I think the big question of evidence isn't is it precise or accurate or should be followed, but does it actually speak to the case, which is, which is more of a legal conception of what evidence is we use evidence in a justice concept, because it speaks to the case not because it expresses a fundamental truth or, or directs what people should be doing.

Victor Montori:

And to speak to the case it has to, it has to hold up to scrutiny. It has to be, it has to be, it has to be believable, and it has to be truthful. And but all of those things are subservient to its purpose. And its purpose is to advance the case, so advance the situation of the person whose care is our primary goal. It has to matter. It has to matter in the lives of people because you're focused on the way people matter.

Ian Hargraves:

Yeah, it has to contribute.

Victor Montori:

It has to contribute. Ian it's been an absolute pleasure to talk to you. You expand the way we think about things, you give us new language, you focus our mind on, on making a difference in the lives of people by when we care, making sure that we are doing it for the right reason that we focus on the way people matter that we try to matter in people's lives in ways that are productive and contribute to the realization. And I'm absolutely fascinated by what you're going to do next, as you move this notion of design, which up to this point has been very much focused on redesigning the way we care for people to now thinking about taking that further and, and building health with patients caring by redesigning health and health care. It's, it's been an absolute pleasure talking with you and learning from you and sharing you with, with our audience. Thank you again Ian.

Ian Hargraves:

Thank you. Thank you. It's been great.

Victor Montori:

Excellent. Join us on the next KERcast from the Knowledge and Evaluation Research unit. Thank you very much for your attention and please take care