In this final KERCast of the 2020-2021 season, join Dr. Victor Montori in conversation with Dr. Carl May, renowned sociologist and Professor of Medical Sociology at the London School of Hygiene and Tropical Medicine. Dr. May’s research focuses on developing a richer theoretical understanding of the normalization of innovations in healthcare and of the notion of burden of treatment and patients as unpaid workers of the healthcare system. Don’t miss this fascinating discussion as Drs. Montori and May deliberate the role of serendipity in shaping one’s career trajectory, the importance of putting in the work to maintain and sustain collaborative relationships and friendships, of behaving well towards yourself, your colleagues, and your data, and the impact of collective action to effect positive change in health care theory, research, and practice.
In this final KERCast of the 2020-2021 season, join Dr. Victor Montori in conversation with Dr. Carl May, renowned sociologist and Professor of Medical Sociology at the London School of Hygiene and Tropical Medicine. Dr. May’s research focuses on developing a richer theoretical understanding of the normalization of innovations in healthcare and of the notion of burden of treatment and patients as unpaid workers of the healthcare system. Don’t miss this fascinating discussion as Drs. Montori and May deliberate the role of serendipity in shaping one’s career trajectory, the importance of putting in the work to maintain and sustain collaborative relationships and friendships, of behaving well towards yourself, your colleagues, and your data, and the impact of collective action to effect positive change in health care theory, research, and practice.
It's time to start the KERcast, brought to you by the Knowledge and Evaluation Research unit at Mayo Clinic. I am Victor Montori, your host for this last KERcast of this first season. And it is an amazing opportunity that we have to finish the KERcast with Professor Carl May. There is no way of doing justice to Carl and an introduction that would not take all the time of a KERcast. And so I, you know, and Carl and I have a wonderful collaborative relationship in our research. And so I've been thinking about how best to introduce Carl to all of you. And first of all, he's a sociologist, in what matters to our conversation, he's a sociologist that has focused on the, on a couple of areas that matter tremendously. One is the normalization of innovations in healthcare. And the second one is the theory of burden of treatment. He is at the London School of Hygiene in London, you know, that does the name. And, and but because we are in full pandemic mode, we are reaching him in at home. He's one of those few people who have felt at home, at home during the pandemic. And it is lovely Carl, to have you Welcome to the KERcast.
Carl May:Thank you so much, Victor, it is lovely to be here. Or to be there.
Victor Montori:Yes. To be together.
Carl May:Yeah.
Victor Montori:Carl is, is I should have also said that you're a survivor of the Icelandic volcano disaster that had one upside that we can we know about, which is the opportunity to have trapped you in Rochester, Minnesota, surrounded by our colleagues at the KERunit for a much longer than planned period. But that changed our lives, didn't it?
Carl May:Well, it changed all of our lives. And yeah, no, that was actually a much better time than than the you know, the description Icelandic volcano disaster might, might have, might have suggested. No, that was really, I, it was just really good fun. And the thing that I always remember, is the just the warmth of the welcome from people who were saddled with me for yet another week, and yet another week? And who who didn't seem to tire of being friendly and polite.
Victor Montori:You make it easy, you make it easy Carl. So the first question I always ask in these things is how does, how does, how did you become Carl May?
Carl May:Well, I, I became Carl May through a series of entirely unpredictable events. So I left school at 16, and I worked as a hospital porter and as a hospital cook. And then I was a filing clerk for quite a long time in the Ministry of Agriculture in London, and one day I got the opportunity to go to college, and that, that coincided with my being asked to spend three weeks at the government file storage facility at Hayes trying to find a lost document in 16 miles shelving. And so I resigned and went to college. And and, you know, I discovered I kind of intended to be a lawyer. I was very interested in international relations. And I was very interested in the ways in which, the ways in which governments regulate each other. Where these interests came from I've never, I've never been quite sure but they say they were there and I thought well, that'd be an interesting thing to do. And on my second day in college, one of the lecturers approached me and he said Carl he said, "Have you thought about not doing law" I said, "Well, no, I haven't thought about not doing law. Why do you ask?" I think you'd be a really good sociologist. And there you are, it turned out he was right, to some degree. And I just, I just really enjoyed what I was doing. And I think, you know, if you enjoy what you're doing, it doesn't feel like work. And so for a long time, nothing I did really ever felt as if I was working. It was it was really interesting. I did a PhD at Edinburgh. I did a postdoc in psychiatry in Edinburgh. And then I had a series of lecturing jobs, and then again, quite by accident, and this really was an accident. And I had knocked over a pint of milk in the kitchen at the University Department that I was working in. And I was scrambling around to mop it up. And I, there was an old newspaper sitting on the, on the table, and I was sort of using this to absorb a pool of milk. And in the middle of it, there was an advertisement for a full professor job at the University of Newcastle. I applied and despite the fact that the Vice Chancellor of the University who was chairing the interview actually fell asleep during the answer to one of my questions. There were 28 people on the interview board. There was no oxygen in the room. And he did drift off. But I was very surprised and I got this, got this appointment. And so I think I, I think that was nine years after I graduated PhD, and I was a full professor, I was an inaugural professor in a faculty that never had a professor of medical sociology before and I just, I just loved it. And I have been equally fortunate to have wonderful friends to collaborate with. I, I'm sort of, in a world where nothing is planned, you just there are some things you still have to work harder. And one of those, I think, is maintaining and sustaining those sorts of collaborative relationships. And, and, and also at the same time managing them as friendships and making them into something more than the sum of their parts, because I do know people who behave entirely instrumentally at work. But it it's always struck me that they live very unsatisfying lives.
Victor Montori:Unsatisfying in the workplace or unsatisfying lives total?
Carl May:Well, I can't speak to their lives beyond work, but certainly, I can't imagine that if that's how they behaved with their colleagues, I can't think that that's how they would not behave with other people in their lives, I can't imagine.
Victor Montori:So you've, you've, you are the product yes, of chance, sounds like you're the product of a visionary mentor, who saw through the, you know, that you could, you could eliminate or confuse things as a lawyer or you can eliminate or confuse things as a sociologist and decided that your pathway of sociology and, and you went along with it, and then it sounds like your luck was also helped by paying attention to what you were mopping the floor with, which was a professorship, I've heard, there's a metaphor there about, you know, crying on spilt milk, and then mopping the floor with a professorship and, and then people falling asleep. And next thing you know, you're a full professor, I mean, that there's something there.
Carl May:Um, yeah, there's an awful lot of hard work underneath that.
Victor Montori:Well, that's the thing, isn't it? Yes.
Carl May:If you love something, it doesn't always feel as if it's work. Yeah. I just kind of close the blinds because...
Victor Montori:That's alright. That's alright. The, the one of the one of the things about this thing that you have to work hard you said, you know, in addition to the scholarly work itself, the instrumental thing that you've mentioned, is that you said you have to work hard at, at relationships and friendship and that strikes me as one of the upsides of science, right is the notion that you do this, you get to show up to work and work with people that you like, work with people that get you, get what you're trying to do, that resonate with you that build on what you're offering, that take the gift that you're offering and, and give you other gifts back. And, and you are bigger, better, faster, smarter, clearer, because of the company you keep. And and the same, they can say the same about... That is not the picture that many people have of scientists, and certainly social scientists, you know, one looks at some, in some disciplines of social science, and one sees these papers with a single author. Right, and you go, you know, is this, what is this? You know, is this? Because I agree with you that the fun part about science seems to be the fact that you're, you have you know, these incredible relationships?
Carl May:Yeah, I think I think I mean, I certainly have my share of single author papers, I think I probably got 10 or 15 of them. And I think, over time, it's very easy to write a single author paper, when you're early in your career, and you've just done a PhD. I think over time, and as one becomes more senior, then one's always working in big and quite intellectually diverse teams. And I don't hold with the idea that, that you can just suddenly decide to, to hijack all of those thoughts and work and and say that they're your own. I know, it does happen. I know, people do do it. But I think, I think that denies the reality, of the work that we do, denies the reality. I mean, I've got a couple of papers now with patients as co authors. And that kind of denies that that sort of accepts and acknowledges the reality of the complex web of social relations that we're involved in all the time...
Victor Montori:I was just going to ask you, when you, when you, when you look at your, when I look at your career, the, one of the things that one sees is this movement towards the production of theory. Many of us have had to write grants and write proposals and hold people accountable for, to what extent their activities, their choices of experiments and, and measures are theory informed or theory driven. But few of us have stopped to think about where, you know, what's the value of these theories, where do theories come from? How did you, how did you arrive, for instance, at normalization process theory, which has been a major contribution to healthcare and to our career, you're laughing, but it's, I'm being completely serious. I mean, for probably the, you know, one of the few times during this conversation, but you know, it's a, that's a phenomenal contribution, Carl, so how does one arrive at that?
Carl May:Well, I think the answer is it's complicated. Robert Merton, who was the sort of doyen of American sociologists for about 1000 years, he had this, in one of his books, he's got a great footnote where he talks about theories springing fully formed from the minds of men. And that is more or less unless you're Richard Feynman, and you're sitting in the canteen at Cornell watching people spinning plates, and suddenly the theory of quantum electrodynamics arrives in your head. That's actually not how theories arrive. So normalization process theory came out of about I would guess, every study that I did, and every PhD that I supervised over a period of about 10 years, and I, I walked away from these, these different studies looking at different areas of chronic disease management in primary care, genetic counseling in hospitals, the development and evaluation of telemedicine systems. So one of the great advantages of most of the jobs that I've had is that I was the senior sociologist in a whole faculty. And so, sociology was, most of the time was the only sociologist in a department. So sociology was what I said it was, and that that gave me the opportunity to do a huge and this is I praise God that I worked in medicine, and didn't go in other directions. Because I've had the opportunity to do a huge variety of work in many different contexts without anybody ever saying, Oh, well, you're a specialist. So I've been able to be a generalist sociologist who is interested in medicine, and who then became interested in doctor-patient and nurse-patient interaction. And who then became interested in how different kinds of health technologies shape clinical practice. I you know, that's, that's the background to my whole, my whole career. And I was struggling, I had a project with some good friends, people that I think you have met Tracy Finch, and Francis Mair and others, where we were, we were trying to understand how and why the National Health Service in Britain found it so difficult to adopt telemedicine systems. And I was interviewing a junior doctor, then now a very senior emergency department, Professor of emergency medicine in the UK. And after the interview, was finished, we were having a chat and a cup of coffee and sort of just talking about the state of the health service, which is a sort of perpetual, perpetual conversation, isn't it? And he said, he said, you know, Carl he said the thing about telemedicine is it doesn't work. The name tells you that it doesn't work. He said, because if it worked, it wouldn't be called telemedicine, it would just be called medicine. And in that moment, that I suddenly, my, my head went back to an undergraduate sociology course about Peter Berger and Thomas Luckmann's book, the social construction of reality. And I realized, of course, that the essence of adoption and implementation is that the thing that is being adopted and implemented, disappears from view. That that actually, it just becomes part of the normal routine of action in much the same way that I think almost no clinician now thinks twice about having a stethoscope. I'm sure there are clinicians now that want powerful nuclear stethoscopes that cost millions of dollars, and that require an enormous staff that, you know, the old fashioned stethoscope has been, you know, that's been going on for two, two centuries. Everybody knows how to use it, and nobody thinks twice about it. And so that's, that's really where the the kind of inspiration for normalization process theory came from that one moment. But it would have been impossible for it to come from that one moment, if I hadn't been involved in all of those other studies. And if I hadn't read Berger and Luckmann's treatise on the social construction of reality. So there's a sense in which fortune favors the prepared mind. You know, I say that, you know, nothing ever happens by by accident, really, you know, all of our accidents and serendipities are only visible to us if we if we can see their implications.
Victor Montori:Well, there's two other things Carl. One is that this conversation this insight occurred in conversation after you had finished the interview, so the plan to work was over. Right and, and so if you had been of the kind that was very disciplined, you would have finished, let this person go and off you go. And you would have missed that moment, right. So there's a, this goes back to your interest in cultivating relationships with people that probably lead to that coffee and lead to that opportunity.
Carl May:I was fascinated by this man, he had so much interesting to say about his work and the life and, and about the, the sometimes very fleeting interactions he had with people in the ER. And the other thing that I must say is that I amnot good at everything. And I am not a great interviewer. I'm actually not a great field researcher. And many of my colleagues will smile and nod at this news. I'm quite, I'm quite good at interpreting data, qualitative data. And I'm not at all good at actually collecting it. I, you know, we all have, we all have different strengths. And quite frankly, I find a lot of interviewing rather boring. And it doesn't suit me temperamentally. And it's not something that I'm particularly skilled upon, I think partly because, as an interview progresses, I'm sort of building a sort of low level of theory of what's going on. And then I want to test it rather than collect data. And because, for me, theory is nothing more than explanation. That's all we're doing. When we make theories, we're creating explanations. Or we're trying to build a better explanation for something.
Victor Montori:In preparation for this interview, I told you that one of the cringe moments of our interactions, at least to me, came in a delicious dinner that you and I had with, with our better, much better halves. The night before Brexit, the vote, and, and we had, we were enjoying incredible food and great company. And I said this thing, which of course, was extremely, you can use any adjectives you want, I'll take them all. And I said, Carl, why, why are you spending all this time doing this theory stuff? I mean, what's the value of it? And, and yet, here we are, finding the theoretical contributions you've made, having incredible practical application in the work that we do. Did you, did you expect when you went into theory that you will have the impact that you've
Carl May:I had literally no idea. I, if I had known how this had? was gonna turn out, I would have been a lot more careful about how I did it. I had literally no idea. I wrote the, the first, the first NPT paper, sort of 2006 I wrote that for a seminar. I didn't, I didn't sort of intend it to, to go any further than a sort of expert seminar that was funded by the Arthritis research campaign about changing clinical practice. But the reception that I got was so, so enthusiastic, that I sort of wrote it up as a paper and then I got asked to give it as a plenary at a big academic primary care conference in Europe and I did that and, and then that work, it obviously filled a gap. At that moment, it filled a gap. And, and I think it was attractive to people because it was based, it was, it was not at all philosophical. It was it was grounded in empirical research. And often done independently as a theory building process. I, so that I didn't have to, to push too hard at the door to open it with people who were really looking, there was a real need, then it It's different now, because there are about 8 million theories of implementation. But then there weren't. So people were looking for something that would take them away from diffusion of innovations theory, which was not helping them. Or away from the theory of, the theory of reasoned action, you know, Fishbein and Ajzen's work about intention, about intentions and, and behavioral norms. And something that was a bit practical. So, what in a sense we did was to describe practice, but then to take it up a couple of notches and say that these were the explanations for this stuff.
Victor Montori:So orienting, orienting the, orienting people to this space and providing an explanation for success and failure.
Carl May:Yeah. So and that, and that seems to have worked, and it. So we described and then, as you know, I had later on opportunities to go to the Mayo Clinic I had, at the same time, opportunities to go to Australia with into Jane Gunn's department in Melbourne, which was no less friendly, or congenial than the Mayo Clinic but was much closer to some pretty good vineyards. And so, I had the opportunity to work with tremendous people around the world very quickly, who, who saw an opportunity with, with NPT, and then a series of grants, and some of which were very small, to continue to develop it. And then my partner in crime, Tracy Finch, and Tim Rapley, who was a research fellow in my group in Newcastle, they're both now full professors in in Northumbria University at Newcastle, they, they put together a great bid for money to develop a set of quantitative instruments to measure these constructs. I, I'm never gonna, I'm never going to be a big statistical researcher, because I'm very profoundly affected by number recognition dyslexia. So, in fact, I look at, I look at numbers, and it's just like looking at I don't know all gray, it's all gray.
Victor Montori:I'm glad that you're into words, because that is a, you know, that helped. But one of the things that was attractive to me about NPT was the fact that it focused on the work that people did, you know, not what was in their minds, or what we thought was in their minds, or the explanations they gave after the fact. But what was observable and, and what was, the other thing that resonated with me about it is that it talked about collaboration, and, and just like, you describe research as a very collaborative activity with friends, and so forth, the theory that you've developed also recognizes that same phenomenon of collaboration among people, as the key, the key machine of implementation and normalization. And, and that also resonated with us, because we know we've been working on shared decision making and other things and, and in, those are, those are paradigms where we go from the self management idea, the motivation idea of patients, to the notion that care is a collaborative activity, which patients and clinicians are working together to make it work, to make care of fit, which, of course, is the theme of this conversation. So, so that was very attractive to me. Do you think that your appreciation for this idea of people working together is a reflection of you know, it came from your recognition that you were doing that as part of your research? Or is that a worldview that you bring with you and that allow you to see that and put it in your theory, or that it really emerged from the from the empirical work?
Carl May:Well, I think these things come from from multiple sources. So I had, I had actually, as a junior civil servant, been involved in implementing things, nothing of value or importance, but but at the same time, I sort of had a sense of, of what you need to do to get something done. I remembered that sometime after I began the project. I think that this comes from having a sociological worldview, because that says humans are social creatures. The whole, the whole business of being human is about interacting with others. And if we are denied the opportunity to interact with others, terrible things happen to us. So, you know, if you go to the Supermax in Marion and look at prisoners who were kept in a concrete box for 40 years, they're in a pretty terrible state. Because they're completely denied opportunities for sociability. That is, in history, we see very few, very few big things that happen because of individual behavior change, we see lots of things that happen because of collective action, and collaborative work.
Victor Montori:But Carl, the mythology of discovery, the mythology of advancement, is often told, as, as the, the story or the history of usually a man, of you know that, like you said, you know, saw it, and made it happen in the force of his will, right. And there's this strong mythology of the individual making a difference.
Carl May:I think that's true. And and I think that's because those sorts of narratives are hugely attractive. And also because they're quite easy to tell. Well, we have some great evidence to, to the opposite. If you read the transcripts of JFK, in the Oval Office, during the Cuban Missile Crisis, it's absolutely clear that he's making decisions. But what he has in front of him, are an enormous team of people who are talking to him all the time. So these are actually, this is collaborative work and collective action at its best. A book that I go back to, again and again and again, the diaries of Lord Alanbrooke, who was the Field Marshal in charge of the British Army during the Second World War. Almost nothing in these diaries is about him. It's all about him and other people, it's about his relationships with Winston Churchill or, you know, Eisenhower or any of these people. It's about the creation of a network of actors organized around very different versions of a common cause. And we in, in medical research, and in health services research of different kinds, we neglect these wider kind of opportunities to to explore and understand behavior, to our, to our peril, because we say all these things only happen in medicine, but you only have to pick up a history book to see that they happen everywhere all the time.
Victor Montori:So when when one looks at your career, then do you recognize a principal or a set of values that has been pushing you forward?
Carl May:Yeah, I do. And I think I feel very strongly that behavior matters. And how we behave towards each other matters. And I've, so I have tried to behave well towards others, but also towards my work. And towards the people that I work for. I think, I love what I do. I care about it very much. I care about the people that I work with very much. I've, I'm very fortunate I have some fabulous talented PhD students and I have had many of those over quite a long time now. And some of them have become incredibly powerful researchers in their own right with big, big research teams, I love mentoring, I love all of that stuff. So my values around trying to do the right thing. That that's not always an easy or painless process. You know that as well as I do. But trying to do the right thing, in the context of collegiality and congeniality. And so I've also obviously had senior management roles in different, different bits of different universities. And so I have encountered some of those difficult moments, but so I've tried to just do the right thing. But as I see it, not as anybody else sees it, as I see it.
Victor Montori:But this is this, this is, so behavior towards, you said behavior matters. So this is behavior towards, towards the work, towards others towards yourself?
Carl May:Yeah. I had, I had the great, I don't know, whether it was the good fortune, or the great misfortune to be assigned a leadership coach, at one point in my, in my trajectory, when when I think it was thought by my employer that I might one day want to, to be in charge of something important. And she was, it turned out that she was an exceptionally astute and interesting woman.
Victor Montori:The coach?
Carl May:Yeah. And, and she sort of encouraged me to think a lot more about behavior and what was good and what was bad. And to be very clear about what I would tolerate from others. And what was acceptable or unacceptable. And, and I found those, I found those conversations extremely useful at a time when, like a lot of people in, in health care, in higher education, in any kind of organization, I was confronted with people who were behaving in a very difficult and challenging way. And I was being pulled in several different directions. And that sort of, that sort of helped me get back on track, really, in terms of what personal integrity means to me at work, I think it's very easy to possess personal integrity when the mortgages of others don't depend on you.
Victor Montori:Hmm.
Carl May:I think, I think it becomes more difficult, the more distributed your responsibilities are. You know, there's always, there's always an easy way out of lots of problems. So I've, I've, I'm not going to suggest that I've suffered immeasurably for my art, because obviously I haven't, but I, I, I have tried to behave well towards my data, and behave well towards my colleagues, and behave well towards myself in those, in those contexts.
Victor Montori:Yeah, well, it seems like a that's a, is a good way, in fact, it resonates quite strongly with our, in the KERunit, we have this, this set of values that we make explicit as part of our culture, which is, you know, that were patient centered, that we try to act in, in high integrity ways and we and we tried to act with generosity. And I suspect that, that coincidence of values is one of the things that made it easy for us to work together, Carl, one question that has come through, I think connects this conversation we're having about behaviors with the conversation that we had earlier about normalization. And one of the things that has normalized in some of our institutions in healthcare and has come to the fore, I think with significant strength recently. And unfortunately, it's only recently or at least, unfortunately, only recently with this significant strength. It's the issue of the extent to which we have organizations that are cruel, oppressive, exclusive of groups, in the United States, I think, and in the UK, to some extent in Europe, to another extent, those groups are sometimes defined by racial/ethnic characteristics by migratory status, by gender. Is there a way of applying normalization process theory to the denormalization of those of those oppressive structures?
Carl May:I hope so. I hope there is. Because what I think NPT does is it provides a way of helping us think about how to achieve particular kinds of objectives. I'd say that an implementation process is defined by the translation of strategic intentions into everyday practices. So if our strategic intention is to replace one set of practices, or one set of categorizations with another, then implementation science as a field ought to help us to, to, to understand and to create route maps and waypoints that we can travel down. But I think the, the, the, the more important component of some of what we're talking about, is the sort of moral logic that underpins whole systems, where I've been having a debate with a friend and family practice in the UK, where we've been talking about how the shift to providing medical care by telephone and video conferencing during the time of COVID has, has changed relations between doctors and patients. And I think what this has brought into sharp relief, in some contexts, is a tendency that was already well in, well underway to hollow out the bonds of moral obligation between doctors and their patients, or between states and citizens, and to reduce all of this to an entirely transactional state of being.
Victor Montori:Mm hmm.
Carl May:Now, that's what's happened in many other sectors of the economy.
Victor Montori:Yes.
Carl May:And, you know, our friendly bookshop owner has vanished, you know, the lovely bookshop over the road from the Marriott Hotel in Rochester, Borders, I think it was that I really used to enjoy going into and I got a great pile of books every time I went to or every time I came to, to Rochester, where you could actually speak to somebody who is knowledgeable about books has vanished, and it's been replaced by Jeff Bezos, who probably doesn't want to talk to me about what the best sociology book on the market at the moment is. Although perhaps he does, I don't know.
Victor Montori:Well, we, you know, we have this. This is why we revolt. You know, this is a loss of that, that both solidarity at the level of society as a whole and, and community and partnership and friendship and collaboration. So, yeah, I see that...
Carl May:Yeah the sort of undermining of some of those, some of those features of, of the societies that we live in, I think, has been quite interesting. And their replacement by other forms of attachment, I think, is equally interesting. So for a long time, in the United Kingdom, I would have said it was very bad manners to talk, talk about politics. By and large, unless you were with people who were in the middle of it, I woul never, for example, wander arou d to my parents, neighbors and ay, Well, how do you feel abou the Conservative Party or what ver. But what Brexit did, and ou talked about Brexit, whic is a grim night, in many respe ts, levened only by that love y conversation, and I recal an excellent bottle of Clare. That created a set of politica attachments that weren't about political parties in much the ame way, I think we see happen ng in the United States, a set of political attachments hat aren't really about being in a political party, but are abo t objecting to the way in whi h politics and economy are or anized in in different ways. A though the difference between t e United Kingdom and the United States, as far as I can se, is that most of the people w o are objecting in the United S ates are carrying automatic wea ons and wearing funny hats, w ereas...
Victor Montori:Both countries are trying to challenge the, their first names on a daily basis. But oh, but united. Let me let me go back to theory, because this series is about care that fits. And one of another phenomenal contribution that you've made in which we have had a bit of a contribution ourselves in the KERunit has been this theory of patient work and patient burden and treatment burden. How did that come about?
Carl May:It's a natural consequence of looking at the normalization of clinical innovations. If we're going to look at the normalization or implementation of different kinds of clinical interventions, then to fail to look at their impact on the people who they are intended to benefit, I think, is, is negligent. Actually, I think everybody wants to believe that whatever new machine or decision making tool or whatever that we introduce, actually really does improve the lives of its users. But very often, it's just more work that is difficult to fit in. And I had in 2011, I had a period of very acute and nearly fatal illness that meant that I was not well, for a couple of years. And I really began to think about all of the work that I was having to do for different doctors, and the immense amount of work that my wife had to do to, to sort of keep me tracking back and forth to, to hospital and to different clinics and things like this, and plugging me into whatever tube people felt like plugging me into that day. And, and I began to track this, and at the same time, my mother-in-law was sort of entering her decline. And one day as a, as a sort of experiment, as a thought experiment. Christina and I, my wife and I plotted out a map of all of the people who were actually contributing to keeping her out of an assisted living facility, and sort of mapped what they were doing. And it came to, there were about 30 people involved. And I thought an enormous amount of work is going on here. And actually much, much more work than would ever have happened if if she had gone into an assisted living facility where, you know, she would have been looked after a bit and, and I, and I sort of began to do that for myself as well. And we kept time diary of my mother's hospitalizations, and things like this. And I just suddenly became aware of the enormous workload of ordinary health care, not anything that's innovation. But just if you're, if you are involved, as a patient, or a caregiver, in the management, the self care of chronic multimorbid disease, it's a huge body of work and time that that involves, and the way in which that stretches out across networks. And so we wrote this, and you were a co author, and so we're members of your group, Kasey and Nathan Shippee, and David Eaton and people like that, we wrote a series of papers, the cumulative complexity model, the burden of treatment theory model, Kasey's BREWS model. And that sort of brought up to date, the the sociological interest that had been very long standing in what people need to do, the work that had come out of, Anselm Strauss' research group in San Francisco, you know, which I go back to again and again now for all kinds of reasons but and his PhD students, Juliet Corbin and Kathy Charmaz, who died this last year, Adele Clark, those kinds of people who were doing these fabulous studies of patient life and patient work, and I think what we did was to ask ourselves, not about what's the work that you have to do to be a patient. But what is the delegated work that comes from a healthcare system. And this is, I think, where your interests in sort of industrialized medicine and mine in wireless patients coincides, because it is about this, that there has been a qualitative change in the notion, the nature of patienthood, over the past three decades, where now it's not simply just about reformulating one's identity in relation to the physical, physically involved...
Victor Montori:Getting a new passport for the country of the
Carl May:Especially about becoming an unpaid member of the sick so to say... healthcare workforce. And, you know, I, you quite often see this, the patient is part of the team, well the patient is only the part of the part of the team to the extent that they conform to what the team wants them to do. And the patient is only part of the team, to the extent in which they're able to summon the cognitive resources, the the material equipment, the financial wherewithal, and actually the social networks that are needed to support that activity. And that I find, I, I feel very strongly that that's something that needs to be thought about. And that innovations are great for healthcare systems. But actually, they're not always great for the people who are intended to benefit from them. And so there is this, the Janus faced nature of healthcare innovations, on the one hand, you know, we all, we're all benefiting from things that will keep us alive longer, and polish our pancreases and all of the other stuff. But at the same time, we're having to give up more and more of our cognitive and informational and material capacity to, to actually work with that.
Victor Montori:So the the, it's, again, there's a unity to this, which is that then the burden of treatment theory, one of the contributions, I think it makes is it brings up a lot of attention to the fact that the success of the implementation of treatment plans not only involves the mobilization, personal resources, but the mobilization of people around you that can collaborate and work with you to try to make that work. Right. I mean, once again, the notion of self management kind of challenged by by the notion that in fact, it takes a village, to be a good patient.
Carl May:Well, actually, it takes a corporation. I think that that you see, I think informal workgroups with a with a clear division of labor, a clear allocation or self allocation of resources. And sometimes those work groups, bridge, informal networks of friends and acquaintances. They are sort of Venn diagrammed into different bits of the healthcare system. So throughout, throughout my process of illness that I was talking about just now, without a doubt, the most significant worker was my consultants' secretary. Who, who was the font of all knowledge, who rearranged appointments, who made it possible to do one thing or the other. Because I was desperate to not stop working. And so I needed the system to make some concessions to me about when I could see doctors and things like this. And I think, you know, being a professor in a medical faculty helps you with that, but not not as much as you'd think.
Victor Montori:So this has been a wonderful conversation Carl and we're coming to the end I normally ask you know, what are the next steps, but I'm going to make an exception here because there's a question that has come through that relates to advice that you will give to somebody starting a PhD in implementation science. And I was just wondering, you know, as we talked about collaborative groups and how success comes from collaboration and working together, that we still judge scientists and students individually for their individual accomplishments. You know, people don't, don't do dissertations as a collaborative endeavor, and we don't, we don't evaluate them collaborative, you know, in their ability to actually bring a team together to execute things, we tend to evaluate the individual, test the individual. So can you, can you bring this together? What advice would you give to somebody that's starting and does it...
Carl May:A sociological critique is, we value people who conform to a set of norms and conventions, but we think that valuable work is what sits outside of those. There's a difference between what we value and what we think is valuable. My advice to anybody beginning a PhD, in any topic is, under no circumstances, work on a PhD that doesn't interest you. There is no good reason to spend five years of your life dragging away at a topic that you don't enjoy. If you don't enjoy that sort of work, don't do it. Pick a, pick a, pick a question that is fundamental. Never do a PhD about evaluating something. Who cares whether it works or not, the really important question is why. So fundamental questions are much more important than pragmatic, pragmatic ones, even when the money is for a pragmatic thing, find a fundamental question to ask, you know, I was very fortunate that I could absolutely choose the topic of my own PhD, nobody tried to control it. Nobody could be bothered actually, to try and control it as far as I could see, but those were very different times. And I was able to read and study what I wanted. So I say if you're going to do a PhD in implementation science, find, find in it, what you believe you are going to love. Because otherwise, it's a hard journey.
Victor Montori:And how do you deal with fear? Because it seems like you know, if you pursue what you love, sometimes you're gonna find yourself in pretty dark places where people who may not have been, where others may not understand why you're doing it, and, and you you'll be completely consumed by imposter syndrome. And so how do you, how do you handle it?
Carl May:Well, there are two ways that you can do that. There's some people become entirely narcissistic, which is a very successful strategy, I have to say in those circumstances, that you know, we all have to the really important thing to know about any research career, all research careers, end in failure, all of them because at the end of the day, the problems are still there to be solved, we can only make an incremental contribution to getting there. And so, imposter syndrome is often founded on a view that we should all in some way, be outstanding and perfect examples of the research enterprise none of us can be you know, failure is the single most important thing that we can do, because that tells us what we need to learn what we, how we need to grow. You know, I'm not suggesting that people should fail their PhDs but I am suggesting that people, that imposter syndrome is something that is foisted upon us. None of us, none of us need to be imposters we, we do need to have a sense of proportion. And we do need to care less about what some people think of us.
Victor Montori:Well, Carl, the, the, the answer to my question as to why the heck work on theory. I think you've explained this as about the value of fundamentally asking questions of why, and and you said in the preparation meeting that we had something that stuck with me, which is that the most practical work that you've done is your work on theory.
Carl May:Well it is, I mean, without a doubt, and I provided and other people, very close collaborators who have worked with me on those projects, Tracy and Tim, and you and Jane Gunn and Francis Mair and many others have made all of that possible. I feel that, you know, in lots of ways I've been blessed, and I, we all suffer from imposter syndrome. There's nobody who's never been anxious about themselves. And believe you me, there are a few things that in that, that call upon more hubris down upon an author, than calling a paper towards a general theory of anything. That that's the point where you discover the true, the true meaning of imposter syndrome.
Victor Montori:Carl, I can't imagine a better way of finishing the first season of the KERcast than this conversation with you. It's been a lovely, lovely, lovely moment. And I want to thank you very much for your time. And thanks, everyone for joining us, at the KERcast and I hope we'll see you on season two.
Carl May:Yeah, thanks very much for having me. I've enjoyed it too. It's always such a pleasure. Always a pleasure to talk with you. And so I don't actually know who's out there. But Hello, everybody and I hope I haven't bored you.
Victor Montori:The only question that has been left unanswered Carl is why there is a T rex behind you.
Carl May:Well, that's Terry, and he is, he is a monster. We should all have a monster. You know. I think it's very important to keep having toys.
Victor Montori:I think this is the best way to finish this conversation. Take care Carl. Thanks everyone. Bye bye.