KERCasts

Making care fit through shared decision making

October 20, 2020 KER Unit Season 1 Episode 3
KERCasts
Making care fit through shared decision making
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KERCasts
Making care fit through shared decision making
Oct 20, 2020 Season 1 Episode 3
KER Unit

In this edition of KERCasts, join Victor Montori in conversation with Dr. Marleen Kunneman, a clinical linguist and PhD in Medicine with dual appointments as a Research Associate at Leiden University Medical Center in the Netherlands and as Assistant Professor of Medicine at Mayo Clinic. Drs. Montori and Kunneman contemplate the dream of a common language between patients and clinicians, the importance of gratitude in life and in work, the challenges of measuring “care that fits,” and more!


Show Notes Transcript

In this edition of KERCasts, join Victor Montori in conversation with Dr. Marleen Kunneman, a clinical linguist and PhD in Medicine with dual appointments as a Research Associate at Leiden University Medical Center in the Netherlands and as Assistant Professor of Medicine at Mayo Clinic. Drs. Montori and Kunneman contemplate the dream of a common language between patients and clinicians, the importance of gratitude in life and in work, the challenges of measuring “care that fits,” and more!


Victor Montori:

Good morning, it's time to start our KERcast, brought to you by the Knowledge and Evaluation Research unit at Mayo Clinic. I'm Victor Montori your host today and today is a wonderful day. We have an extraordinary guest joining us today for the KERcast. Marleen Kunneman is a doctor in medicine with background in linguistics, who is an assistant professor at Mayo Clinic, and works as a researcher at the Leiden University Medical Center in the Netherlands. Marleen is a world expert in care that fits through shared decision making. And it is a wonderful, wonderful pleasure to have you today on the KERCast. Welcome, Marleen.

Marleen Kunneman:

Thank you. Thanks for inviting me.

Victor Montori:

Delighted. Um, as with all of these I love to start by by asking you how this How does one end up being Marleen Kunneman?

Marleen Kunneman:

Yeah, I was afraid you were gonna ask that? I don't know. So the short answer is I don't know. I guess most of most of the things that happened in the past I've been on I think most of that was I wouldn't say luck or chance. But it just happened. I think looking back, there definitely are some some themes and some some interests that I had when I was younger that I still have and that may have shaped you know why I chose to take a certain path, but I don't know, I guess I you get to be Marleen Kunneman, if you're flexible enough to to just take chances and to just walk a path if you see it.

Victor Montori:

Is this is a path that is is it a values path? Is it a path of of what's simply what's offered, what's in front of you? Or is it, is there something deliberate about selecting the particular road?

Marleen Kunneman:

Obviously, there is some I have a say in it, it's not that I just take every chance that I get its, I think I've always had an interest in, in people and in people's health, or unhealth, if you can say that in English. I have an interest in in how people interact, how they are when they're together. And I've definitely had an interest in, in perspectives. So you know, if you read a book, if I read a book, why do we not read the same? Why do we not feel the same? You know, if, if you watch a conversation between a patient and the clinician, why do you judge that differently from from what I see? So I guess that that's always been been there. Those are topics that are that have always, you know, been there and in the past that I've walked. So there definitely is some some say and, you know, what I do.

Victor Montori:

is is is is the path towards linguistics oriented or informed by that as well? Or how do you end up in linguistics.

Marleen Kunneman:

There was trial and error actually. I've had an interest in language, I wasn't really good at it, you know, but but I had an interest in it. I was even in secondary school I started writing quite a lot. So it definitely was something that I was interested in. So I started studying Dutch culture and Dutch language. And then I soon found out that you know, the linguistics part was the part that I was interested in most. And then during that study, I found out that health could be brought back into my studies if I focus more on psycholinguistics and neuro linguistics and clinical linguistics, so that's where I started to do my minors and started to graduate.

Victor Montori:

Phenomenal. The you know, you're the only doctor in medicine that is not a physician that I know and and I was reflecting on that and it's fascinating because it is, a you know, you have a PhD in in medicine itself. You know, in the, in this in this mysterious ways in which two people come together with a sole purpose of care, right. And that's, that's a it's a very unique area of study, versus, you know, the biology and pathophysiology and the treatments and the pharmacology and the epidemiology and the treatment, that will be medicine, you you, you are looking at that caring interaction, and that is the focus of your study. That's why you're one of the preeminent and people studying care, you know, the process of making care fit. Did I get it? Right?

Marleen Kunneman:

Definitely, when I did my PhD, I focused on on how patients and clinicians can work together in making decisions. So that interest in shared decision making started quite early in my research career. And it's almost like, you know, patients and clinicians need to find a common language need to need to find words that we both understand. And then and if we use words, they should have the same meaning for both of us. So it's almost like you're, when two worlds work together, that you need sort of a pidgin language to bridge that and language needs to develop, when people are working together. And that that has really caught my interest. How can you do that? And how can you still care while doing that? Can you even care if you don't do it?

Victor Montori:

That's fascinating, because it brings a new dimension to making care fit, in that there is almost like a preliminary step in which we, we learn what you mean, when you say that you have this concern or that ailment or that situation. And if I'm trying to offer explanation, or respond to your concern, as a clinician, I have to do it in a way that does at least two jobs. One is to reflect back to you that I that I understood what it is that you're going through, and that I am ready and able to respond competently and with compassion towards you. And there's a whole lot of language that needs to be common for that communication to occur. How do people negotiate that? How do people get to? I mean, I, you know, I, in your papers, you talk a lot about dancing, and I suspect that there's a lot of stepping on toes that happens as people are trying to figure out a common language, right?

Marleen Kunneman:

Yeah, I think so. And I think that one of the worst things we can do is that when people step on each other's toes that we judge, and that, that we, we blame them that it's not good or not good enough. Because people won't learn if we do that, people won't grow there, they won't be open to trying a new language to developing that new language, if we, you know, keep blaming them for what they're doing wrong. What was interesting, while you were talking, I was thinking about how we are talking about how to make care fit, and you need the patient that you need the language for that if you don't have it, you're making medicine fit, or you're trying to make medicine fit, but it's not caring, it's not something that you know, has the patient's best interest.

Victor Montori:

Industrial healthcare does that a lot, right, where you look at the mission and vision statements of hospitals and and oftentimes the word patient is just not there. It is almost like the organization's could exist in the abstract without having to respond to anyone, right. So, the fact that you have to develop a common language implies that, it requires the other to be there in order to have that exchange. The other thing that it does is it actually creates a new justification for insisting on continuity of care, because all that effort in developing a common language, and now you have to do it again with the next condition and again, with the next clinician right. So if you had a if you had a if you have continuity of care, this also continuity of language of care that that is born from that, isn't it?

Marleen Kunneman:

I think so. And some of the common themes that we hear are, you should trust your clinician, do you feel trusted by your clinician? And I'm not sure it's really about trust. I'm also not sure whether it's about you know, becoming friends with your clinician or it's, it's that sense of feeling comfortable. Not having to be afraid that when I say this, how will this land? If I expressed some anxiety, you know, will the clinician act inappropriate to that. So there is a sense of developing a relationship. And I think that happens through language.

Victor Montori:

And there's, there's the safety, that is created in that, yeah, we might get it wrong, but we will forgive each other if we get it wrong. And then there is a certain language of comfort that can be developed where you feel you feel cared just just in the language that is used and the language that is not used, for instance, language of judgment, like you were talking about it. So maybe you can see the direct line between this interest in language and care care that that fits. As you've gone through this journey, I'm interested what what's been your primary value, what what has been the driving the driving idea, that you've you've noticed, seems to seems to explain the choices you make.

Marleen Kunneman:

I think it's so I don't know if it's, if it's something I need before I make a choice, but I think to stay grateful is something that sticks with everything I do, or at least I try. So even if there's a chance, you're not going to take it and be grateful that you had it. In my research be be just be grateful for any chance that you get, be grateful for, for your colleagues and for what they can do. Again, it's not about trust, it's not about how I trust a colleague to do something because that kind of implies that I I don't know whether he's or he or she's going to do a good job, but I trust you will. Being grateful is really about having a team and and acknowledging, you know what others can do what, what they're good at, and what they like to do. Also, in talking about my research, be grateful for what patients and clinicians do, it's very intimate that they let themselves being audio taped or videotaped during an encounter and having these personal conversations about, oftentimes, life changing events, and I get to watch those. So I am extremely grateful for those hundreds and hundreds of patients that let me watch, they're these these little stories, these little pieces of their lives, the time they invest in my study, you know, without this, all of my work would not be possible.

Victor Montori:

It's a huge privilege, isn't it? So as clinicians, when I think of a of a clinician, I always start by saying, as someone with the privilege of the bedside, right its someone who has been given access to this, this incredibly intimate and difficult moments of patient's life, and yet you as a researcher, have the, you know, are granted that same privilege by the participants in your research to video record or be present in their visits, which is a way in which you determine the extent to which they develop a common language, and they did that shared decision making, right, so gratitude.

Marleen Kunneman:

Definitely, yeah.

Victor Montori:

The, it's gratitude for the, for the big opportunities, I would think, you know, like the patient seeing, seeing, letting you see their visits and participate in your studies and complete your surveys and, and these sorts of things. And I presume its gratitude also for the opportunity to work with nice colleagues and people that you like, and so forth, and be able to present in conferences, and I think the, the chain of gratitude, I mean, seems like it's essential to conduct this kind of research.

Marleen Kunneman:

To me, it is. I'm not, I'm not one of those types that looks at a dot at the horizons, like, that's the place where I want to be I, I just want to be in nice places have, you know, be surrounded by people that I like, and wherever the path will take me, I, you know, I will at least consider going there. So I really don't know what the dot at the horizon is, but looking back, I am extremely grateful for everything that I've been able to do. You know, how do you become me? I never expected that I would do all this would meet all these people and, and and hear all these stories and, and really do what I what I love to do. I'm extremely grateful. So even if everything would end tomorrow, you know, I really hope that I can stay grateful for for what happened already.

Victor Montori:

Yeah. And it's interesting, as you've mentioned that I mean, some of the best work I've done, I've had an opportunity to do it with you. And I'm incredibly grateful, also for having had the opportunity to this point of doing some, some phenomenal work with you. That is very good. And it does seem does seem to me that there is also a gratefulness for the little things, isn't it?

Marleen Kunneman:

Oh, definitely, definitely. And it's not that you don't value the big things. And you definitely also need, you know, some big, big steps or big compliments, or I don't know, whatever makes you feel good about what you do. But to be honest, there was this one project that I, I received an award for, and I was very, very happy about that. And at the same time, I received an email from someone I never met before, a researcher from from the country that I've never been in saying, Oh, I just came across this article, I just wanted to send you a note that I really find inspirational. And I have an interest in this area. And you know, I actually I save the email. I still have the award, but the email, it's such a small gesture, someone taking the effort of not only reading what I do, but actually reading it to the end, and then sending me an email, probably having to look up my email address to that, yeah, that that really warms my heart, that that's really special.

Victor Montori:

Well, and I made the comment about writing. And I think the kind of response that you got that email probably speaks also to the kind of choices you make in your writing. Right? I mean, many scientists feel the need to use rigorous language and to communicate the rigor of their own science. But I've noticed that you're not afraid of using not only rigorous language and being very rigorous about your research, but communicating that research with language that would, it's inspiring and inspires not only transmits your gratitude, but also transmits beauty. Do you endorse that idea?

Marleen Kunneman:

Well, it sounds really superficial. But if you're able to make something pretty, that's not pretty, then why not do that? Why not try and make it, you know, a piece that that has nice sentences and beautiful words and thoughts, and it's just it's way more fun to read in that way. So what why not, why not? Add that joy to the paper? If you can,

Victor Montori:

usually, because some editor is going to come in and take it out. Right?

Marleen Kunneman:

Yeah, but they usually push back and really try second second time to get it in again.

Victor Montori:

Yeah, well,

Marleen Kunneman:

doesn't work always. But

Victor Montori:

it works enough that you can see it in your, in your published publications, right, I mean thats

Marleen Kunneman:

You don't want to know what they took out.

Victor Montori:

True, true. You know, the KER unit, we have these principles, right? We we like to think of ourselves adhering to these principles of patient centeredness, integrity, and generosity, you know, we've heard how gratitude is a big, big driver to you, but which of these three principles resonates the strongest with you?

Marleen Kunneman:

Um, so if I have to choose I think I would have I would go with generosity. I think that overlaps with the gratitude as well. But then it has to be sincere. You know, there's there's no point of being generous if it's not sincere, there's no point of being generous if you if it doesn't have integrity, as well. So you need it, you need the integrity, I really, really value the integrity as well. And, yeah, I don't think I can choose the last you know, it's all about the patient. Without the patient, we wouldn't have this job. So I cannot say that that patient centered is not important as well. It is centered around the patient.

Victor Montori:

Centered around the patient with high integrity and generosity. So are we missing a value?

Marleen Kunneman:

The gratitude?

Victor Montori:

So this, this seems this seems to be means that he will be a corollary of the generosity is that when others are generous with us that we feel and express significant substantial gratitude, genuine, gratitude, sincere gratitude.

Marleen Kunneman:

Yeah. Well, and perhaps even if, if you're grateful for what, what, what is happening, perhaps it makes it easier to be generous. So I am already grateful, for what there is.

Victor Montori:

So you have an international perspective on researchers and that you have been very active in mentoring junior researchers in a number of ways. I wonder about this role of values in research? I mean, we, for us, it's, you know, we've put them in from the start, and we kept it, but but how frequently do you see people make their values explicit?How important is it in research? And when you talk to junior people, do you, do you bring that up? And when you talk to senior people, do you see them doing so? How, how, what's going on in the world in research in relation to principles and values?

Marleen Kunneman:

Yeah, I think that's, I think that's a very difficult question. I don't, I don't think that we talk about our values, or what drives us enough, I think we can definitely do that more. I think, working as a researcher, still, you know, like, sort of a young researcher, or at least on the younger half of the research field, it is so tempting to just get on the train and get going, and you need more publications, and I want to have more papers and more presentations, and I need to have more money, and I need to have awards, I need to have, you know, stuff to put on my CV and, and make sure that people notice me, and I cannot deny the importance of that I cannot because, you know, my career would stop if if you don't care about those things. And at the same time, I really hope that I'm not getting noticed, because of those things. And I really hope that, you know, any, any colleague I help or supervise or work with, in whatever way doesn't have that as a primary goal as as the primary, you know, guidance through through what we do. But to be honest, if I look at, you know, 10-15 of my closest colleagues, I don't think we actually discuss our values often enough. I don't think we do that. Perhaps it's too vulnerable.

Victor Montori:

Yeah, it perhaps is too vulnerable. You want to go there? What do you mean by that?

Marleen Kunneman:

Um, well, it is, I think it is a profession, where you are by yourself a lot. And if you're really into the numbers, if you're really into getting more publications, and more money, and more grants more, then I sometimes get the feeling that you know, people think about themselves, and then if there's room then we can think about other people as well. So I think it's vulnerable to actually talk about what really drives me and what I do, which is not the number of publications. But I can't say that of course, because you know,

Victor Montori:

Yeah, it exposes it, expose it, that's what I mean by vulnerable, you can get hurt by doing that. Well, that's a pity,

Marleen Kunneman:

Maybe, maybe it is a pity. It is a pity and I don't know if it's specific to to our, you know, profession, our our field, or whether it's just, you know, how how the world can be sometimes.

Victor Montori:

Yeah, the and yet, it's such a social activity to the research, isn't it? That if we cannot create just like in the discussion you just had about patients and clinicians, if we do not create the common language, we do not open our hearts, to connect with each other, which requires us to make ourselves vulnerable. We cannot develop the kinds of collaborations that improve each other.

Marleen Kunneman:

Yeah, no, I agree. I definitely agree. I think that the best projects are the projects where, when you have an amazing team and you know people that you, you really look forward to spending more time with them that no one was, you know, happy that it's Monday and that you can start working on a project again. And the best collaborations are when, when you have an interesting novel topic to me, those topics need to be, you know, rather big steps. I really don't like the, the baby steps or the small little improvements, I like to take big, bigger steps. You need people that can build together, you need people that that can work on something together from from their own experience and their own capabilities. And we had conversations on this before that, what I like the most is when you don't, you don't sort of start working on the same project, and you build one tower, and I build another one. And then we kind of make a bridge in between. But I really like it when just you take one brick, and I take one brickand we start building, and it doesn't look good. So we start tearing it apart. And we start all over and and you really co-create something, it's it's something that that is a product of the team. And, you know, for example, the award that I got, I was the one standing on the stage, but it really didn't feel like my award, it felt like award we got for the work that we did. So yeah, those are the best.

Victor Montori:

Yeah, I agree. I agree. That's, that feels, that feels lovely. I'm going back to this idea of being gratitude about small things. I mean, we were taping this in the midst of this COVID pandemic, you are in Europe, Europe is looking at potentially closing things down again, in a second wave. You know, we're looking around wondering what is going on? And has it been a little thing that you're very grateful that has helped you get through is to this nightmarish time

Marleen Kunneman:

That yeah, nightmarish time. So there was I actually think I think I sent it around to some some colleagues as well. There was this podcast, I don't know if that's the right word, on YouTube. I'm where, Taika Waititi. So he's a director

Victor Montori:

The JoJo rabbit guy, right?

Marleen Kunneman:

Yeah, he is. Yeah, yeah. And he read one of Roald Dahl's books, and he flew in, not literally, but digitally, all these big shots. And it was, it was amazing. It was I was actually counting the hours until the next podcast would be online. So yeah, I really enjoyed that one.

Victor Montori:

These were these were famous actors that were reading parts of the story, and having a good time together.

Marleen Kunneman:

Yeah, yeah. And it wasn't just a story. It was Roald Dahl.

Victor Montori:

What is the big deal? What is the big deal about Roald Dahl?

Marleen Kunneman:

Um, he's just, he's just amazing. He's, he's, I'm a huge fan of Roald Dahl. I think I've read all his books, probably in English and in Dutch. Which is actually interesting, because the reason why I read it in English and in Dutch is because I love his language. I really, really love the words that he uses he, I read his children's books. So he has books for adults as well. But I like the children's books, the most. He writes for children, but it has so many layers. So it's very interesting for an adult as well. And I think he uses just the right amount of language that we already have to make clear what he wants to make clear and then he adds on it. So he makes up words he makes up you know, phrases or expressions. And then his thinking is so original. So I really love that when you read his books, you feel that you feel this. You know, you're not restricted in thinking or in language.

Victor Montori:

Yeah, it is. It I can't avoid making the parallel between what you're describing Roald Dahl does for language and lack of restrictions and using the language that is used and expanding on it, and how we a few minutes ago, describe your papers.

Marleen Kunneman:

I hope so I, he's definitely a huge inspiration. And I think it all kind of links, you know, even that I I rather take bigger steps than small steps, and I rather fall while taking a bigger step than having to take a safe small step. I think that all links with, with this feeling of I really hope to not be restricted in how I think or how I write, when I write in the language I use.

Victor Montori:

The if you look at your work, what do you say the meaning the meaning of your work? What does it mean so far? Well, maybe we should start with, you know, what has been your work? Or what's your what's your most exciting work right now? And then maybe think about what what does he mean?

Marleen Kunneman:

Yeah. Um, so I'm going to reverse it I so what what my work means is that there's not enough care. That's what it means, if there were enough care, then or wasn't care, then then you know, I would be out of a job, and that would be perfectly fine. So the fact that I'm still working on this means that there, there's improvement to be made. And, and it's worth making, you know, I'm not talking about about the little steps or about small adjustments, I think there are systematic things that we can do to make care better. So then, if I, if I link it to the work that I do, currently, I, the the main interest I have is in how patients and clinicians can work together in making care of fit. So you know, actually the theme of, of today's talk, I'm especially focused on how we can do that in, in a human way, in a humanistic way. So how can we not lose sight of I'm a person and I'm talking to a person. While I'm caring. And we've we've done some research on that, and we've, we've looked at how often this is addressed in current research in shared decision making research when patients and clinicians work together, and it actually is almost never addressed. So we're very much focused on on trying to take the right steps in the right sequence at the right time. And we're forgetting that while we're doing that, while we're learning to dance, and while I'm learning to take those steps, okay, I still, you know, be looking at my dance partner and seeing Who is it? Who is this person? So I think that's, that's very important. And what kind of links to that is, is, is the work that we're asking patients and clinicians to do? So what is the work of collaborating in different levels, so cognitive, but also emotional, practical, especially now that limitations in in medium to talk? So what is the work or the burden of participating in shared decision making? And then I think the last theme that I'm really interested in is is, you know, that perspective kind of side. So how do we measure this? And how can we measure this in a way that actually makes sense? That doesn't just give us a number, but that gives us information about what is actually happening? Because I really feel that oftentimes we we measure and we quantify what perhaps cannot be quantified. And it loses its meaning as soon as you you know, stick a number to it. It's it's certain things just cannot be quantified.

Victor Montori:

Yeah, I think that one of your most cited or retweeted papers has been measurement with a wink that makes that, that that case in a very eloquent fashion, but the other aspect of burden, you're a researcher, and so and you talked about being, grateful to patients and clinicians for, but there's also a burden of participating in research, that you've been at the forefront of trying to develop this notion of minimally disruptive research, right?

Marleen Kunneman:

Yeah, definitely. So there's some colleagues that we're working with to try and get a sense of what that burden actually is, and, and I've noticed in the past, especially when I was starting my career, that is very tempting to think, oh, let's just add this. And let's add that. And oh, perhaps we can look at this as well. And I think, you know, even though it's tempting, we're asking patients and clinicians to participate in this. So we're asking their time, we're asking their efforts. Often these questions are actually quite heavy, you know, it's not, what did you have for breakfast this morning? It's about you know, are you feeling depressed right now? Do you have any anxieties at this point? Do you feel you trust your clinician, these are heavy topics. So just adding a few more questionnaires, I, you know, it really has to have a meaning to it, if you want to do that. So minimally disruptive research, I think is, is really important. If you measure it, you should publish it, if you're not gonna publish it then don't measure it. You know, don't measure it for a secondary analysis that you may want to do in 10 years, because you're not going...

Victor Montori:

It would be nice to have it right?

Marleen Kunneman:

So we have too much nice to have measures, nice to have data. And we actually, you know, we need to be careful that we we we don't get stuck in this nice to have or nice to know kind of atmosphere, it's it's about more than that. If there's something you should know then you should do something with that knowledge, if you're not going to do to knowledge, then you should kind of reconsider if it's really worth doing. If it's worth asking people for the time and effort.

Victor Montori:

It is interesting, because it configures a notion that you want to you want for care to be in this way. And the research to get you to that point should also manifest the same values if I may that you would like to see when care translates your research into practice. Am I getting that? Right?

Marleen Kunneman:

Yeah, I think so. What I said, I think it's just really important to minimize the burden of the research, for patients, for clinicians and for researchers. So yeah, I really think that, you know, doing the research is, it has to be respectful. And you know, even if they don't complete the whole questionnaire they tried, they did, they took the effort of starting, and then there was a reason to stop.

Victor Montori:

So there's a certain kindness in this approach, isn't it?

Marleen Kunneman:

Well, there should be I think there should be.

Victor Montori:

There in research today, there's a strong emphasis on bringing patients and caregivers as partners in the research. And as you were talking about being vulnerable, and speaking of one's own values and dreams. There's a there's there's also a vulnerability at stake when we partner with patients and caregivers, which is we do expect them to speak of their own experiences, and of their own challenges and difficulties. And yet, we as researchers remain, you know, we have a distance and we have a we protect ourselves, you know, behind our positions, but we do expect our partners who are patients and caregivers to give, right. So there's an there's an extension of your idea of vulnerability, particularly pertinent perhaps, when we involve caregivers and patients as partners.

Marleen Kunneman:

Yeah, I think so. And I think a way to kind of, you know, going back to measurement with a wink, we ask patients to participate, but we do it at a point where we really actually know what we're going to do. And what we want to find. And so it is kind of a measurement with a wink. Yeah, there was a patient involved, but no, really, there wasn't. And that's that's disrespectful to their time and to our work, frankly.

Victor Montori:

We are having a wonderful, wonderful conversation with Dr. Marleen Kunneman today, and I welcome participants' questions as we move into the last bit of this conversation. Marleen, one of the, you've been talking about care that fits and I'm curious to know, what do you what do you mean by fit? And then perhaps, what are the features of those conversations that achieve that goal? What, how do we help people have those those those those careful interactions that then lead into care that fits what what do you mean by that?

Marleen Kunneman:

Yeah. So I I think care fits when it's it's medically at least reasonable or sensible. And when it doesn't disrupt patients life too much, you know, any disease and any healthcare intervention disrupts to some extent. But there's no point of, of curing a disease or getting better if if it's not possible to live during or afterwards. So I think that's the most important, important thing about care that fits. How do we get there? I, I think we, we do need a conversation, I'm, perhaps I'm a little bit old fashioned, but I don't really believe in all new technologies, and that we're there yet I really believe that this is something that we create, while bringing different perspectives together, different expertise, perhaps on, you know, the medical side and the personal side, on the context of the patient. So yeah, how to exactly do it? I'm not sure yet I, I'm working on a project to find out more about, you know, what is care that fits? What do we believe care that fits? Is and? And when is it relevant? Is it always relevant? Or are there certain circumstances where it's more or less relevant? You know, who decides that care fits? Is it is it up to me to decide as a researcher, can I observe the fitting of care or the fitness of care? I don't even know if I can. So in this project, we're trying to combine different areas, we have a partnership meeting where we invite clinicians and patients and researchers to talk about these topics, and, and also to form a research agenda for the coming years. We're looking at the literature, what is already there, what kind of, you know, words are used, what kind of things are measured when they talk about making care fits, either using those words or not? And then, you know, go into practice, going to, to the clinic, and, and observing, videotaping patients and clinicians and, and having them look at their own videos and say, you know, where did you get the sense that there was fitting going on? And where did you get the sense that there was a mis-fit that that the other one was going in the other direction that you didn't expect? Or that you thought was further away from you? So there are definitely different aspects that we're working on. To get a more scientific feeling or idea of what fit is, you know other than the feeling that you have.

Victor Montori:

Scientific feeling, seeing the...

Marleen Kunneman:

scientific feeling

Victor Montori:

Yeah, it seems like a interesting combination its almost like you, you sort of know, you, you, you recognize it when you see it sort of thing isn't it, but then you're trying to wrap around some rigor so that it can be a reproducible finding, video recording, you've mentioned that several times. Seems seems I mean, right now, we let essentially, every tech company, video record almost everything that we do, and there's a there's this, an anxiety about not being able to hide into someone's private life because private life is, you know, a threatened and then if not, you know, very hard to have. And here's this very private instance, patient clinician interaction about a medical issue. How do you get to video record? Is it essential and to what extent do you prevent care from happening because there's this intruder in the room that might be interfering with the process that you're trying to measure?

Marleen Kunneman:

So I think if you really want to look at the language and what is happening I think observing just gives you the best information the most reliable information we can look at what people recall or what people thought but those are already colored by by their feelings and and perhaps previous experiences, what they heard before so if you really want to know what's happening, then I do think that is very valuable to observe and then you're talking about an intruder in the in the conversation, but you know, the GoPro is way smaller than I am so it's easier to get a GoPro in the room and have people forget it then you know, have me in the room and observe the conversation. Another advantage when I have a GoPro or an audio machine is that you know I can have someone else look at it. So it's not just my judgment. It's it's more you can try and make more objective by having other people look at it with, you know, I like to work with people from different backgrounds. So if you have a researcher You know, I'm, I have a background in linguistics, you have a clinician, you have a designer, a philosopher, you know, looking at these encounters, we will all see different things. And this is the perspective that I, that I've mentioned in the beginning. It's the same encounter, but we won't see the same.

Victor Montori:

Mm hmm. And are you afraid that the the presence of the recording device changes the nature of the phenomena you're trying to capture? Are you are you afraid that you might be interfering with care?

Marleen Kunneman:

Um, yeah, afraid? Yes. Do I think it will? I don't know. I think it's good to be afraid of it. And, you know, it shows that you care. Yeah. So I think in general research may interfere, you know, if I asked you questions prior to the encounter, and then you're gonna walk into the encounter, then perhaps you're going to have a different conversation than when I didn't ask the questions. So yeah, there are some, there is some interference, probably. But I think that we still have enough to learn to not be bothered by that, you know.

Victor Montori:

So it seems to me that you're talking about at least two people interacting, and you've mentioned something about maybe feeling a little old fashioned that you know, the technology doesn't seem to be doing the same job yet. Again, this pandemic has opened the floodgates for telemedicine, many places are talking about remote consultations being the default, you know, and then maybe if you qualify in, you know, because of how sick you are, or then, you might qualify for an in person visit, almost making the in-person interactions going the way of maybe house calls have gone away in benefit of office calls because it's more convenient for the system. Yet telemedicine has opened up access to people who are very afraid of exposing themselves to getting infected or going to the medical center, and has turned out to be very convenient for people in terms of being minimally disruptive, they don't have to interrupt their lives, they can just pick up their phone, and they have a consultation. Where do you fall on this remote consultations and the possibility of making care of it.

Marleen Kunneman:

It's different, it's it's just a different approach. And I don't think it's it's better or worse, but it's just different. And you shouldn't be trying, you know, to do the same trick in person as you do online or the other way around. It's just a different style. And you know, even if we have to go there for research, it's going to be different, we're going there for teaching as well, and it has some definitely has some advantages. And some things are a bit harder. So you know, body language is a bit harder to to noticenon the camera. So these are things that we would miss, but it definitely opens doors.

Victor Montori:

Yeah, the, I've noticed, so I've done now, quite a bit, you know, with the when I take care of my patients with diabetes I, I have had now substantial, more experience than before with video visits and and I've noticed an emotional effect on me. So when I have my in person visits with my patients with diabetes, at the end of a full calendar, I feel energized by the by the interactions. There's a qualification I want to put in there because I've noticed that the personal protective equipment and the requirement for the distance in the consultation, in the physical consultation takes I think one of the sources that I drew for feeling better about myself at the end of a visit which has to do with touch, that there is restriction on touch that it had to be, that it has to only be done when absolutely necessary. Like when I examine the feet of patients with diabetes means that when I want to express emotional connection, I I'm only left with my muffled words, you know, behind the mask and maybe the expression of my eyes, but I cannot accompany that with a physical expression, which I recognize as part of my repertoire. But when I finish an afternoon say of of consultations on video, I'm exhausted. I'm completely depleted. I have a metaphysical explanation as to why that is, but I'm curious to know why why do you think that might, I mean, first of all, is that just me and I need to get help? Or is that you think this a generic general issue? And if so do you have an explanation as to why that would be?

Marleen Kunneman:

Oh, that is a difficult one. Because I recognize what you're saying, I don't I don't see patients in person. But I see people in person and I see people online, and it's definitely more exhausting online than it is offline. So no, I don't have an explanation for that. I do think that, you know, coming back to the issue of language, that language is more important. If you're online, that you know, you have to compensate because you cannot touch the patient, because you cannot express empathy in a physical way. Your words count. So how can your words heal? How can your words comfort, that patiernt, if you're online, and perhaps making that translation of not being able to use all all your qualities, but having to focus and limit to one and having to expand that one? That probably that just costs energy to do so.

Victor Montori:

It takes more effort. There is this notion of one of the arguments for shared decision making is this notion that we network our brains that we make decisions together, that we can take different positions in argument and through argumentation arrive at a defensible way forward that seems to respond to the person's situation, this idea of networking our brains, we assume it's done through language, you know, either verbal language or nonverbal language. My metaphysical paranormal explanation as a rigorous scientist is that perhaps there are other ways in which we network that may involve for instance, smell, or the transmission of chemical that, that there are some chemical signals that we might be emitting, that might convey our sense of care, our sense of love, and that, we, we scan it, and my phone, when my phone is in between Wi Fi signals, it runs, it depletes its battery very quickly, because it's constantly looking to see what to tune to. And there is nothing there. And I wonder if the reason why one gets exhausted is one is reaching out to make connection with that human. And it's, it's really hard, really hard to me. So that's my, that, you know, once this zoom technology begins to transmit smells, we might be able to connect better, although that may be profoundly undesirable. So we'll have we'll have to see is the task then more difficult if the patients are of a different culture, I mean, one of the things that I've noticed is with the advent of income inequality, and segregation by class or, or educational levels, that patients and clinicians no longer share the same communities often times, particularly, for instance, specialist consultation, so perhaps more than some of the GPs or primary care consultations. And so there's a bigger job at developing that common language that you talk about, because there's no not necessarily a common experience from which to draw that language. How do you, have you ever looked? Or are you interested in looking at the issue of care that fits when clinician and patient come from different backgrounds, different cultures, perhaps more obviously, speak different languages.

Marleen Kunneman:

So I haven't personally looked at it. Um, I know, some, some colleagues are looking into that. So it is a topic that's been picked up. And I, I think it's more, I think it really is more broad than, you know, a change, a difference in language or difference in, in culture. Because I think that, you know, even me, and my neighbor could be very different. And if I, if she's my doctor, and we're gonna have a conversation about what to do we both need to be aware that we're very different and what is our common ground and how can we still work together? And how can we develop this language to make it easier to work together? And I think one of the biggest pitfalls is that you you're trying to take care of, you know, someone like you. So you know, someone that you're almost projecting this person will probably value this because I do or because I know people who do and and I think that is that is one of the biggest pitfalls, that you can have in true shared decision making, and truly caring for this patient that is in front of me. And not for groups of patients or, you know, what would I recommend to my parents or, or to my partner or whatever? It's, it's about this patient in front of me and probably is, it's hard to work to develop that common language. But you know, it should be worth it.

Victor Montori:

Yeah, but you have 15 minutes, and the computer requires you to click on a few things here before you document your your visit. And then there's all the people waiting and please hurry up.

Marleen Kunneman:

Yeah, that's annoying. No, that's just, that's not the way it should be. That's not definitely not the way it should be. But, you know, how can you deal with that if a clinician takes the time and needs more time than the clinician is running late and misses dinner with the family and you know, doesn't get to see the kids before they go to bed? And so it's really you have to choose between different kind of bad scenarios. So how can we make this easier well, by by giving people guidelines or giving people tips on how to work together. And perhaps if, if they don't, if people don't see it as doing something, adding something to what they do, but if they see it as this is my way of having a conversation with someone, then perhaps it gets easier.

Victor Montori:

Do you have, do you have any sense that your work today has changed practice?

Marleen Kunneman:

I hope it has. It must have.

Victor Montori:

It better have. So do you have, do you have a, have you had a hint? Do you have sense? Or do you know? Do you have evidence that it has? Because I suspect you know, you get citations and so forth, so you at least know other scientists are taking a look? That's not that's not the job? Is it?

Marleen Kunneman:

No, definitely not. No, it's not being you know, if patients and clinicians don't don't use it, you know, through policies probably then, then there's no point I'm no, I'm not doing research for the sake of research. I think one of the one one thing that I can remember, and that was, you know, very, I was very grateful for was we, we did a study where we looked at the information that was shared between patients and clinicians, and especially information on benefits and harms of treatment. And we found tremendous variation in what was discussed. And then the clinicians actually came up to us and said, Can we do a consensus study? Because this is not what we this is not good. You know, we cannot justify that some patients don't get any information about harms of treatment and and others do. So, you know, what do patients need? What do they want to hear? And what do we think they should hear? And can we get to a consensus there? So that was definitely something you know, that showed me that it was read by clinicians and that they wanted to act after you know, after reading it after learning this.

Victor Montori:

Yeah, well, I think anybody listening to this conversation can, should express substantial gratitude to you Marleen for this hour, we spent together, we've learned quite a bit about not just you and what inspires you and what propels you and what worries you and what gives you pause, but also, how much you add to the task of caring and how much you add to the science of caring and and how when you do it, you do it in a way that also makes makes the world more fun, and, and more beautiful, like you're like Roald Dahl does when he writes I think we're all very, very grateful to you for that and, and I like to finish this this KERcast with a question I like to ask everyone which is what's next for Marleen Kunneman?

Marleen Kunneman:

I don't know. I don't know. I don't know i've you know, mentioned before that there's not a dot at the horizon that I'm working towards. You know, as long as I feel that, that I could potentially make a difference for care that I can add to care, as long as I'm surrounded by colleagues that that have the same feeling and the same value. I will just keep going. Take the chances that you get and just try, you know, the worst thing that can happen is that you, you fail and you, you can try something else.

Victor Montori:

And maybe when you do, you're surrounded by those friends and colleagues. Thank you, Marleen. Its been a wonderful, wonderful time. And thanks, everyone for coming to our KERcast brought to you by the Knowledge and Evaluation Research unit. I hope you join us next time as well and until then please be careful and take care.