KERCasts

Patients and their commitment to care

October 26, 2020 KER Unit Season 1 Episode 4
KERCasts
Patients and their commitment to care
Show Notes Transcript

In this edition of KERCasts, Victor Montori interviews Dr. Eelco de Koning, a professor of diabetology at the Leiden University Medical Center and head of the Leiden Diabetes Center. Dr. de Koning walks Dr. Montori through his formative experiences as a budding clinician and researcher, how locals’ advice to “go slow” when climbing Mt. Kilimanjaro can inform how we support patients, and the value of blazing one’s own trail in life and in work.

Victor Montori:

It's time for the KERcast brought to you by the Knowledge and Evaluation Research unit. I'm your host, Victor Montori. And today, we have just luxurious guest Eelco de Koning is a professor of Diabetology at Leiden University Medical Center in the Netherlands. And he leads the Leiden Diabetes Center there. He's a leader internationally in two areas of work that are critically important for patients with diabetes. One is the understanding of the cells in the pancreas and the islets that produce insulin and how they they live, thrive, die, and can be replaced and regenerated. And also the work of, that patients have to do to participate in their own care and, and, and flourish. Eelco, welcome to the KERcast. It is good to have you, it's good to have you with us. Eelco one of the things that we, that we try to do here is to try to understand how is it that people get to be who they are? And how is it that people get to be in a position of, that you are leading an important research group and making an important impact in the lives of people through your work. So how does one become Eelco de Koning?

Eelco de Koning:

Wow, do you want the long, the short version?

Victor Montori:

The long one and I will take the opportunity to interrupt as needed.

Eelco de Koning:

So, yeah, so it's also always nature/nurture part, you know, and perhaps there's there's a lot of luck to which parents you're born, perhaps that's what it all starts with and opportunities that you get and the role model that they are and I think when I, when I look back upon this, this basically first part is perhaps the part of how did the general Eelco become who he is then, you know, and when I look back, then I see a kind of shy, insecure, introvert boy during actually my entire youth living with flowerpower parents that were completely the opposite of what I was, and, you know, I was somebody who needed structure. And I thought they were unstructured. They were always late. I wanted to be on time. They were outspoken and spoke their mind. And I was rather to seat back basically. And I think, well, perhaps that's what happens. But, but I think there's one thing that that I took from my parents, in that they were curious about the life around them. They were both psychologists, they are both psychologists, psychotherapists, and actually, my brother and sister are both psychiatrists so, actually the entire family is psychology or psychiatry. And actually, I'm the only one who kind of went more into the biomedical field, although that change, probably also but, the part that I thought was, has shaped me in a way, perhaps, were the holidays that we undertook as a family. So my parents, you know, we we drove everything by car, and we were behind the Iron Curtain at the time in the 70s, driving to Greece, going to North Africa and sleeping with nomads in caves, you know, it was it was this outreach and, and I just, I think, you know, when I look back, I was like a sponge of all the experiences. And I was curious, and I sometimes feel that the way I connected with the people on holidays was actually different, like when I was at home. So there's this kind of curiosity and connection, I think, you know, stems from that time period. And then I think when it comes to becoming a doctor or at the end of high school, there is one thing that I still do not understand why I undertook that, but in that time in the 80s, to going to medical school in the Netherlands was like a lottery, it didn't depend upon your grade so much. Because, you know, in the Dutch system, they wanted to have, give everyone the possibility to study medicine, whether you had good grades or lesser grades. But if you did, like, if you finished a high school or specific high school, you could go in. And I had a, I had basically had a ticket to go into medical school, but I, I threw it away. And I said, I want to go to the USA to study for one year I got a bursary in the State College in Pennsylvania, I've never flown before. But it was if I look back on myself, and then to make that decision, it was kind of an out of my comfort zone decision. And I think these kind of aspects of, of curiosity, connection to people and doing things out of my comfort zone are perhaps what, what then led me to, to lead the life after that, and to slowly evolve in becoming, you know, entrenched in, in medicine, but still always this kind of go out of my comfort zone. And yeah, I think that's, that's always been a thing in my life.

Victor Montori:

It's interesting how, as we grow old, the craziness that our parents, sometimes ends up being an asset, as we think about how we ended up where we are.

Eelco de Koning:

Yes, and probably I ended up being more like my parents that I ever was, you know, that's how he things went. That's how he things went. So I think it is, it is for a large part, luck. And then, you know, but at some stage, this kind of luck. Well, also kind of becomes more planning. So when it comes to you're getting into the field of diabetes, I remember that I got a bursary from the British Council to go to Oxford, to do a research internship for three months. And actually, it was research in general, and I could choose the topic, myself, and I knew somebody here and he said, Well, I have a supervisor at Oxford, and he can help you with a study or you can help him with the study on growth hormone. And I said, Okay, that will do. I go to Oxford, I wanted to go to kind of the scientific part of Europe. And so I arrived in Oxford, and there, my intended supervisor said, he said, Eelco, I'm sorry, but I don't have time for you. But I have a colleague, and she's a very nice lady. And she works on insulin producing islets of langerhans. And would you like to do a research trip with her? And I said, Sure, you know, I want to I want to learn about....

Victor Montori:

and that was it. There was no one no one knows, but Anne Clark wasn't it

Eelco de Koning:

And it was Anne Clark and suddenly, and this is where I ended up, perhaps otherwise, it would have been growth hormone or something else. So I think after that, perhaps, and I wanted to know to learn more about diabetes, but not only diabetes, the biomedical kind of islets of langerhans. But I also wanted to know, as a student, I want to know about diabetes care. So I went to Sweden to the Malmo Diabetes Center. And to do like a one month clerkship as a medical student there. And, of course, I learned during medical school during the first years, and I sat, I sat in on outpatient clinics. But what they had there, what was really interesting is that they have had a separate center. And this was a center with a kitchen and the living room, and some outpatient rooms as well. But what they did there is that they saw patients who just had diabetes with a lot of trouble with diabetes. They arrived in the morning, they cooked with the, with the dietician, they talked to the diabetes specialist nurses and the doctors in the room, and they interacted and they connected and that's how they did diabetes care. And that was so different from what I had learned in this kind of Germanic, Dutch, you know, medical system. So after having a flavor of this kind of biomedical cellular parts and diabetes care, I felt this is an area that I really enjoy. Because diabetes has such an impact on the life of so many people in all different walks of life at different ages, with complication, no complications, I was just really interested and fascinated about it.

Victor Montori:

You know, so there is there are several I still am, by the way... things that you've discussed. One is, of course, curiosity. The other one is this notion that although it is luck, it does indicate that there was something in you that was ready to go beyond the limits of your own disposition. You said, y u were introvert, and so forth. nd although your parents .. Well, it's it's a, it increases my gratitude of you being here. The, but it's interesting that your parents sought for you and a large number of opportunities to interact with strangers in what appears to be fairly intimate settings like caves. And so then when it was time to, you know, take care of your own preparation. You did go out of your way to travel and to visit other people. It was interesting in looking at your biography that in that same stay at Oxford, you also interacted with Robert Turner. So for people who are listening, that, you know, I don't know, didn't know, Robert Turner, but I've actually, I'll tell this story, I had a brief interaction as an audience member in a very famous occasion. But, Robert Turner is one of these, you know, giants in diabetes, in that he was a bit of a renaissance man, as I understand it from a database perspective, and that he could go from the basic science and he developed models to understand the insulin resistance and so forth, all the way to clinical care and clinical trials. So you had an opportunity to work with him as well.

Eelco de Koning:

Yes. Because so when I did this, well research internship in Oxford during my medical studies, I mean, it went so well. And then and Robert said, Why don't you come back and do your PhD, your work for your thesis here. So after my medical studies, I went back and I spent three years in Robert's lab, under the direct supervision of Anne, in the lab. And what I remember from Robert, you know, there's always all these mentors, where, where you have like, different messages, and there can be so many, but the one that comes to the top of, the top of my mind, is when I wrote my first paper, and I had a draft, and I sent a draft to him. And, you know, it's like you, when you when you write something, when you were a younger doctor, researcher, you went to your mentor, and you got some comments back, right. And when I got the comments back, it was completely red. It was like red pen all over. It was not only horizontally, but also vertically. And then on the on the front page, he had written in large letters KISS, keep it simple, stupid. And, and I've always tried to keep things simple after that.

Victor Montori:

It's it's amazing how old traumatic experiences are the same for everyone? You know, we've all had this. And then of course, we've made sure to, to help our mentees with similar massive amounts of red ink, hopefully with a little bit more love.

Eelco de Koning:

There was very little compassion...

Victor Montori:

So Dr. Turner, in the mid 70s, organized the, what was supposed to be the definitive trial of glycemic control in patients with type two diabetes. And it was a massive undertaking, requiring funding from government agencies from many countries, Japan, the US, the MRC in the UK, and then included pharmaceutical funding and so forth. And it was, it took forever. I mean, so he started in the mid 70s. He presented the findings in a basketball stadium in Barcelona in 1998. I was in that basketball stadium. Yeah, I was I was an internal medicine resident. And the first slide Dr. Turner put up was a slide of himself as a young man, this is this is how I look when I started this trial. And you know, you could see the man that was presenting the result now and he had aged, you know, yeah, 20 years, right. I mean, that's, that's what it took. He unfortunately, died on tour, right. He was still talking about the UKPDS and I think he, he passed away way if I'm not wrong in a New York hotel room. It is one of those nightmare scenarios that before COVID all traveling academics have that they might never see their their family again after this talk. He had that, he had that. Eelco so, we've heard about this, this journey you've had, and I've picked up a few of those themes, but what would you say is your, the primary principle primary value that has been, you know, driving you through your life?

Eelco de Koning:

I think it is connection, to connect to people, I think I can only mean something for my patients and for, you know, the team members and for other people, if I can really, truly connect to them. I think it is by connection, you know, we have insight in their life. And, if we connect, they patients also let us give them insight in their life, and especially in diabetes care, where a lot of aspects that happen at home, in fact, are so important for how well people do, how comfortable they feel, you know, dealing with with their disease, the barriers that they encounter. I think it is very important to connect.

Victor Montori:

Yeah, because there's not that many people, at least that I've encountered, where, that can go from the cellular level, and then zoom back and see the whole person, isn't it? I mean, that is, there's an exercise in in both connection, as you say, but also in perspective taking that, that seems quite remarkable.

Eelco de Koning:

Yeah, well, I don't know. It's just something that, you know, that I feel comfortable with that, that I also get a lot of energy from that, you know, I think that's also important, you know, what energy do you get yourself from your interactions with people it is, in a way it's reciprocal, right. That if you feel that you connect. Yeah, I think that that's, that is really important for, you know, how I do my work with energy. So I think it goes both ways. Yeah.

Victor Montori:

How much of your clinical care now is through telemedicine through zoom in these days?

Eelco de Koning:

Yeah. So now, it's most of the time its telemedicine, in fact. And, you know, I was now that you mentioned, this, you know, I think connection, connection has many different parts, right, it is language connection, but it's, it's also body language, and it's also eye contact. And, for example, what I find very difficult with with telemedicine is that, you know, I think the camera is not right in the middle, I think you, you think probably that you are somewhere at the lower part of my computer. Instead of that, you know, whenever I have this telemedicine consultation with my patients, you know, it's, I think what, what is important is that, that you have attention, you connect, your eyes connect, and I miss that in telemedicine. I miss that. And, yeah,

Victor Montori:

Yeah, it's interesting, I was reflecting on a previous episode of this KERcast that, that I, on a day where it's in person, I feel energized very much like you're, I mean, it's actually you know, you and I basically became diabetologists at the same time, and I'm resonating quite a bit with the way, and I also got rejected by my first mentor. So I'm resonating quite a bit with the story that you're telling, although I don't think I've ever been in some cave with nomads, but so that there's a little bit of a FOMO there, but the I'm resonating quite a bit with this issue of energizing with connection. I mean, and I was reflecting that in this era of telemedicine on a full afternoon of teleconsultations I actually feel exhausted rather than energized, has that been your experience as well.

Eelco de Koning:

Yeah, absolutely.

Victor Montori:

Do you have an explanation for it?

Eelco de Koning:

These aspects, you know, they play a role as I said, you know, I get energy from interactions and even though I really enjoy, you know, talking to you, I think the ene gy it gives me is still in gen ral less. But I think eve yone it's not only, I mean I hink, you know, probably everyon has the same feeling.

Victor Montori:

Yeah, no, it's a very strange situation. So, you know, like you, we have a research group here, this is the the KERunit, the Knowledge and Evaluation Research unit. And, and one, one of the things that, you know, one of the ways in which we refer to each other is that we are a family that was not brought together by DNA, but brought together by principles. And we talk about three principles that we make it explicit that sort of help us guide, what we decide to do and so forth. And those are patient-centeredness, integrity, and generosity. And I like to ask our guests, you know, if any of these three principles, patient-centeredness, integrity, or generosity, strike them as more, or relate to more strongly than others. Is there one, that's your favorite?

Eelco de Koning:

Yes, and I think I perhaps referred to it already a little bit, just before and but I think it is generosity. And, because I think that actually, generosity, is actually important. And probably, when I think of it, it's it's important in, in two main aspects. So you know, it's like giving is receiving what I just said, right? So if you if you if you give, if you give your full attention, and that has an effect in the person, you're talking within the patients you're talking with, there's something that comes back, that also energizes me, you know, so, so it's giving is getting, giving is receiving, I don't know what the what the right word would be. So I think generosity, and I think it can be generosity. And it's not only generosity in material things, you know, it's generosity and openness in generosity, of that you show sincere interest in what the other person moves. And, and I think when it when it comes to, and yeah, and I think when it comes to patient, it's important, and I think we all feel good if the other person gives full attention, right? It's like when you're sitting talking to another person, and this person gives you full attention, and well you feel energized. And I think we all experience when this other person suddenly looks at his or her smartphone, this magic moment disappears, right?

Victor Montori:

Yeah

Eelco de Koning:

Just very shortly, but it disappears, or when somebody is looking at the clock or. And so I think when you are generous in your interest, in your openness to the patient, this patient will feel special, and will also be more open about his or her own life and in diabetes care that is so important. You know, because I always say, with diabetes, diabetes care is that, let's say you have 16 hours, you're awake, right, during the day. So and let's say eight hours, you're asleep. So 16 times 365. You know, it's 8540 hours, you're awake in a year. So how many hours do you see your patient? Or does the care team sees patients, you know at the consultation, perhaps four hours a year, you know, on average, so that means four hours a year, so 5836 hours, patients have to treat themselves, you know, and they do that in the home situation, something that you as a, as a nurse, as a doctor as a diabetes team know so little about. So it's so important to have insight in that, in this 99.94% of the time, that patients through self care behavior actually, you know, deal with their disease and experience the burden of their disease. And you know, that to identify the barriers that they have.

Victor Montori:

So this openness that you talk about, where you open yourself up to attention and I presume some degree of disclosure invites the other person to mimic you and so they also open up and offer disclosure which for you, not only does it, it brings connection which you value tremendously and gives you energy But also gives you insight as to what might be ways in which you can help the patient, you know, live, thrive with their diabetes. Did I get that? Right?

Eelco de Koning:

It's so interesting that you say that, you know, and there's this one patient that right away, comes to mind. And it's this patient on who we performed an islet transplantation. And he was a, he was an older, older person living on a farm had all kinds of lambs, a lot of sheep and, and he had severe, he couldn't feel hypoglycemia. So he was unconscious several times in a month, on the farmlands and, and it was a real difficult, difficult problem. And so we did an islet transplantation on him. And I, I followed him up several years. And suddenly he said to me, just during consultation, he said, Dr. Koning, you know, everything about me, and I know nothing about you. Do you have children? You know, and, I mean, this was already some time ago, but I thought it's true, right. I mean, sometimes we know so much about the other people, but the same reciprocity that we get from them when we are really interested in them. But of course, they get very little from us as a person.

Victor Montori:

Isn't interesting that there's a group in the world that thinks that healthcare is a simple service in which people interact with clinicians in a very transactional way. And yet, you know, we have this experience, you and I have this experience, where, where people, the process that you get into, and this is not kind of a weird Freudian , transaction, you know, countertransference sort of thing, but it is, there's real, there's real appetite, that to say we I'm disclosing all of this, I'm getting close to you, we are partnering in this, I want to know who I'm partnering with.

Eelco de Koning:

Exactly. Yeah. So I think it's not only with patients, right, it's also with it's also with with colleagues, with teams, with your residents, you know, with with the other diabetes team members that, that when when they feel special when they get when you give them your full attention. You know, I think that's how you get better team efforts. Now, and the second thing, what did I want to say about... Oh, yeah, the second thing about generosity is, is I think it's that the generosity of praise. I'm also supervising the diabetes and pregnancy clinic and this was already a long time ago, we had this interview session, in which women with Type One Diabetes, who were pregnant, were actually sitting with their back towards an audience of a lot of caregivers in this diabetes and pregnancy clinic and there was an interviewer. So basically, they talk to the interviewer, but we were there, and we could hear everything. And there were really two important lessons that I learned from from this kind of interview. And the first one was that they said, our pregnancy was not joyful. You know, when I talk to my friends, they talk to their midwives, about the color of the baby room. And whenever we had interactions, it was always about the diabetes in our life. And the second thing is that, you know, they, they were doing their, their utmost, an incredible effort to have very stable glucose control during the pregnancy so that they would not affect their child. And, and then they would come to what to a doctor or somebody of the team, and they had like, perfect glucose values, but there was one value, which was a little bit too high. And, and they said, you know, we did our best and the one thing that we did, that was perhaps a little bit high, was pointed at so after that, we we said we have to be be generous with praise. We have to praise our patients for what they do and the enormous effort they do within their capabilities. And a lot of, you know, what I hear is that around me sometimes is that, you know, that the caregivers are dissatisfied with something with a higher HbA1c, or glucose values.

Victor Montori:

Well we judge people based on their on their glucose control. We judge them as in their characters.

Eelco de Koning:

So I think generosity with praise. And you know, I think it's it's very important. And again, it's not only generosity with praise, in patients, how they use their self care behavior capabilities in order to do as well as they can. But again, as well as the residents and other team members. So that's why I think generosity really resonates generosity of openness and generosity of praise.

Victor Montori:

I hear you, that's, that's phenomenal. Well, so with that notion, one of the things that I've noticed about you is that you're, you're a collaborator, so you know, perhaps another manifestation of your pursuit of connection. What's been your, what's been your best collaboration, what's been your most favorite collaboration?

Eelco de Koning:

Yeah.I think collaborations, you know, should be inspiring. To be a team effort, and a team with, with people that have expertise that I know very little about. To, to do out of the box things. We have this, European consortium that I'm in, it's called Power2DM and it's basically to stimulate self care behavior, in people with diabetes, and, you know, and also using technology. So there's all these people that know everything about app development, about data integration, about data processing, I don't know anything about it, but there is this gap in e-technology that is there, and there is this European group from all over the place that we built together in order to address this issue, because a lot of the apps that you see in diabetes, it's, you know, patients actually have to do a lot of input. So they have to write, or type in the glucose values, type in insulin type, type in food, and then you get some graphs, and then the message is you took too much food, or you did too much insulin. Well they know, you know, but that has nothing to do with with feedback on behavior. And that's what we what we try to do in this, European horizon project. And, and I think, yeah, the team collaboration, where you really want to do, to address specific aspects that are not there, and that can really can improve, and that can help patients that reflect on behavior. I think that is, that is very important. That's what I that's what I really enjoy.

Victor Montori:

Yeah. You mentioned to me a particular collaborator that taught you in an unusual setting, you know, in the, midst of going to substantial biomedical conferences.

Eelco de Koning:

Yes, so this is just kind of the Eelco, you know, experiencing moments in the life that you want to take along with you. And just like my mentor, just like Robert Turner mentored in a specific way, but he was very, you know, he was very focused on biomedicine. And sometimes, it is people who make you think about how important other aspects in life are that you can also take along in your, your work as a caregiver. And yeah, so my mentor he and I went to a conference together and here is this guy who was was really deeply into lipids and diabetes. And I was a young researcher, and I wanted to, to know all the science that was there in this huge hall, with all, where the conference was held. And suddenly I met him in in a corridor, and there he was sitting, and he was reading French poetry. And I thought, I mean, how great is this actually you know, first you think this is strange, and then you think how great is this, you know, here is this scientist who goes to this conference who is also interested in science and he reads French poetry. And I always, you know, just to get my feet back on Earth, I think about him reading French poetry and then I'm back on Earth again, basically.

Victor Montori:

When you're deeply interested in the human experience, literature is quite helpful in giving you a range, because there's no way in our lives that we're going to be able to, you know, experience the whole range of the human experience. So sometimes, literature can help you get there. But sounds like he was also quite, looking for beauty as well, which is also an important part of our lives, isn't it?

Eelco de Koning:

It is. And we take that along.

Victor Montori:

How did you, how did you make that transition from biomedical aspects of diabetes, to be deeply concerned about the ability of patients, particularly patients with type one diabetes, to, to lead a great life? How did that happen?

Eelco de Koning:

Yeah, so I, you know, it's a little bit, there's this, that you started with, you know, there's this Eelco, perhaps by luck, and then there's this Eelco that went into the, into the biomedical Eelco basically, and then there is this Eelco, transforming perhaps into more the care, you know, the diabetes care, the care for the patient. And, one thing that that has really been a defining moment in my life, and I told you before, that I think how important it is to, you know, to really connect to people, connect to your patients, is when I was asked to join an expedition that was organized by a foundation to climb Kilimanjaro. So it is 19,000 feet mountain in Tanzania. And the guy who organized this was, Bas van de Goor, a really great guy who was a volleyball player, and who won the Olympic gold medal with the Dutch volleyball team in 1996, in Atlanta, and a couple of years later, and he was diagnosed with Type One Diabetes and at the end of his professional career he said, Okay, what what do I, what do I want to do with my life, and actually, he said, I want to, to stimulate sports and exercise in patients with Type One Diabetes, because they are often they're often held back because of their diabetes, you know, already from early on in their life. And he said, I want to show that even if you have type one diabetes, you can accomplish all your ambitions in life. And there, there should not be any, any barriers. And he wants to show that with his foundation, by this group of 8 patients with Type One Diabetes that should reach the summit of Kilimanjaro. And so, so I was asked, and the funny thing is that I was not asked by him, I didn't know him by the time but he had asked two other consultant physicians, internal medicine physicians that he knew. And, one of those physicians came to me and they were about 10 years older than, than I am. And they came to me and he said, they said, Eelco, you know, we're going to the Kilimanjaro. But the two of us, we are not sure we're going to make it to the summit, and we think you're still young. Doesn't look like now but you're still young, we think you will make it for sure. And so that's, so that's when I joined them. And this was really a, well, such, such an experience and why, because I just talked to you about this four hours per perhaps per year that we see our patients, you know, in a consultation room in an artificial situation, completely artificial situation. And now, you know, you can say, well, Kilimanjaro is not a standard situation, either. But at least you know, during these, I think it was 16 days that we were there. You know you could experience how people dealt with their disease, the impact of the disease, the fact that they sometimes the unpredictability and the fact that they some sometimes felt unwell for some time after a hypo that we had to stop that we were sleeping in tents, that we were sleeping in tents and during the night i heard all these alarms, you know, apart from the sounds of the mountainside of Kilimanjaro, I heard all these, sounds everywhere, so, so it was the experience of the impact of diabetes in this setting, you know, which was like one of the lessons, one of the lessons that I learned and as well, the power of, well, what I said before, you know, the power of connection, because I had all this time to connect to them. So, and because I could do that, the questions that I got, and the advice that I could give were so much better, you know, because I knew what was going on. And I, you know, I was in the same situation as these as all these people, you know, during this during this time. So, um, yeah, so I think that what, so that was also a lesson. And the third lesson I got is that wherever you, when you go to Tanzania, and you do this mountain climb, and especially in the beginning, when there are also other people, you know, passing by, and you have the local Tanzanians. And they're very friendly, and they say, Jambo. And then they say, polepole: Go slow, go slow. And I think, also in diabetes care, you know, it is important to sometimes go slow, you don't, you cannot say, Okay, well, we need to improve your blood pressure and your weight and your, your HbA1c, you know, it's, it's impossible, you have to, you have to face it. And there must be, there must be goals for individual patients and to go slow and to interact with the patient and to connect and to see what are the goals that the patient can can really work on. I think that's, you know, that that's another that's another important lesson.

Victor Montori:

So it was it was polepole, is that right?

Eelco de Koning:

Polepole. Yeah. Go slow, go slow polepole.

Victor Montori:

It is interesting, because that connects, you know, as you know, we, one of the, one of the areas of our work has been the idea of making care fit in the lives of patients. That's the topic of the whole series, in fact, and it seems like one of the, one of the areas that we are interested in, of course, is the burden of treatment, all those alarms that you talk about, they're not caused by diabetes, they're caused by our treatments of it, essentially driving the sugar to a low enough level that that there's an alarm that needs to come on, so that patients can recover. So there's a substantial element of accumulated complexity that we introduce, in addition to you know, people's lives, I presume there's substantial complexity as introduced simply with the intent of climbing and reaching, reaching the summit, you know of Kilimanjaro, but in addition, there's an issue that you're bringing up here, which is that in order to make care fit, one has to go slow. There's a certain tempo a certain time a certain rhythm of the intensification...

Eelco de Koning:

Victor, can you repeat the question, there was a small hiccup?

Victor Montori:

I was just wondering, I was just wondering, this this notion of going slow, again, the tempo of the care, how did you bring that into the clinic?

Eelco de Koning:

Yeah. So, so we, so a couple of years ago, we decided with the team that, that we should transform our the way we, Yeah, the way we do our care for patients, and it was an exercise where were all the team members were, were involved. And also our medical psychologist had very important say in this, and actually what we, what we did is that we we said you know, it's no use to focus on HbA1c, what is HBA1c? It's an abstract concept. You know, if I tell somebody you have to change your HbA1c and say, okay, but HbA1c, I mean but how, you know,there's nothing achievable. There is nothing concrete, you don't get feedback right away on an HbA1c during the time you know, perhaps that is measured again in six months time or three months time, but there's no immediate feedback and in fact, the same count for weight so we use weight hardly any time anymore. Weight also has such a burden for a lot of people, and or even blood, and blood pressure, blood pressure is also an abstract kind of abstract concept that you don't get immediate feedback on. So we said in our care is that what we do with the patients, we want to have achievable goals, and achievable goals, it means that they are concrete goals until the next consultation and whether next consultation is by the diabetes specialist nurse or the dietician or the medical psychologist or the, or the doctor, you know, but it is achievable goals and so that, that is one. And the second thing is what we have always in the conclusion or in the, in the outlook in our, until the next consultation is: what is the commitment of the patient in this? So what will he or she do in order to, to make that goal and and that is what we what we discuss together. You know, what, what is the goal? And and when they sometimes patients also have very high goal, you know, they have been raised with HbA1c. This is, they will say, Okay, I want to improve HbA1c? And then then we say okay, but what, how do you want to do that? And what is concrete? And how can you get like feedback every week, or every other week or with glucose or sensors? How can you do that? And, and this we have really and it and to have concrete goals is, also makes within the team, it's very easy to talk about it because you always talk about the same thing. If you talk, if you say we have to improve HbA1c, the medical psychologist could have a very different way of achieving that then a diabetes specialist nurse or a dietitian, but now it is the same. It is it's a concrete goal. Then the third, and then the third one is what is the long term goal. And so what does the patient want to reach? And that could be you know, basically like for elderly patients, you know, being able to play with their grandchildren. Basically, this could be an important goal in their life for for that patient and with other people. It could be you know, they want to have like, no hypoglycemia anymore. Well, it's people have different long term goals. And this is, this is a way that that we have now, yeah, we've been implementing this for some time, and we're very happy with it, how that works out. So this is how we do care, try to have care that fits.

Victor Montori:

Yeah, we are we are chatting with Professor Eelco de Koning from the Netherlands here at the KERcast. And we've gotten some questions from folks who are listening to our conversation, Eelco and one of the issues is related to what you're describing, a tremendous amount of empathy, generosity and disposition, careful listening, prioritizing care, according to people's priorities, rather than some, you know, construct, an artificial measure of something that perhaps doesn't resonate with the challenges of life. How does that manifest in the guidelines and policies that clinicians appear, they have to follow and the timing and the timelines that are available to care for people, it seems like we are accelerated, and the guidelines really focus back our attention on those biomedical parameters, how do you handle that?

Eelco de Koning:

Yeah. So So, this is, this is a difficult issue. I mean, you know, guidelines, and especially also, guidelines by insurance companies, they, they focus on process indicators, you know, rather than on, yeah, patient's related evaluation measures or outcome measures that are relevant for the patients, that are relevant, you know, that are truly relevant. And, and this is I think, this is one of the the challenges and I think when you when you ask me, you know, what should that be in the future then that is something that I really want to put my shoulders onto, to, to change that, I think diabetes care you know, needs to change from a kind of way where we like regularly see every three months a patient at an outpatient ward, I mean, you know, yeah, sure, I can shake hands but if there is, in fact, if there's a lot of issues, if there is not that many issues why should the patient come every three months? Is it to satisfy the insurance company, or to satisfy the financial department of your hospital, or, you know, of the salary of the, of the physicians, I, you know, so. So I think we should really change that into a way where where diabetes care is something where, you know, as as caregivers, you, you want to make sure that patients have enough knowledge and skills in order to do the self behavior that is so important in diabetes care, you know, at home, and once that is present, and it is, it is actually up to the patient, if you're easily accessible, to say, well, now, I need you. And now there is a period that that I'm doing fine. And I actually don't want to come every three months just to say hello, and saying that I'm doing fine. And I think this is the challenge in diabetes care. And this is in my way yeah, care that fits. Yeah, but the fact that guidelines don't help in this we need, we need people in centers like yourself, Victor, and to, to change that, and also with good research, because that's what's needed to convince them.

Victor Montori:

Yeah, I think there's an international group of like minded folks that would like to see diabetes be quite different from these very disease oriented, biomedically, focused mandatory steps that really assume that make sense, essentially, all patients live to be well controlled, rather than they live and want to make sure that diabetes doesn't get in the way diabetes or diabetes treatment doesn't get in the way of their life. And I suspect people understand that, but for some reason, when it comes time to, to either write the guidelines or implement them, something gets lost in that process. And what gets lost is, that, is what you described so, so eloquently. I'm still, I'm still in the caves with the nomads. I don't know why I'm stuck in that part of your story. But it reminds me, it makes me think about home, you know, house calls, home visits, that does your team ever go to patients' homes to, I mean, you spent time in the Kilimanjaro with folks, and that gave you new insight, we should we be thinking about working with our patients to be more in their space, rather than having them come into our space?

Eelco de Koning:

Yeah. So I don't know how we would organize it. But I think to, for example, to involve families and partners in a different way, for example, is also a way of, and perhaps that, well, it could also be in the home. I mean, but of course, there are logistic challenges in that. And yeah, more into group session, we we had a, we have such good experience of group sessions, with regard to, for example, glucose monitoring, which is a kind of technical issue. But it actually not only led to people helping each other, you know, from a technical issue point of view, but also with how do you know, in these group sessions, they interacted with each other. And you saw that, something, people feeling that, I am not alone with this problem. You know, there's other people who also have this problem, which is not only problem with technology, but perhaps also some other diabetes related issue or barriers that they have. So I think also issues like group sessions, but again, the group sessions, you know, there's no the financial aspects of this. So that's why I said that also the, you know, the financial departments don't know how to administrate, this when you do group sessions, but also this could be, it could be very valuable. So it's not only the connection that we have ourselves, perhaps also centers, we should connect people well, in a different way than we've been doing, that we've been doing up to now. And I think this connection is also very important, and that suddenly becomes one thing. One, also one patient to mind. And he is a university, well educated patient, and I see him for type one diabetes, middle age, and he says, and I know for the last 10 years, but he has had diabetes for about 30 years and he says Eelco and he calls me Eelco. So I think we, you know, we have, we have a good connection. And he says, Eelco I cannot help it. But every time I come to the unit, I come to your center, I feel like I have to pass my HbA1c exam. You know, and I'm nervous about it. And when the HbA1c is higher, I feel like I have not passed, you know, as, as if we, he wants to please us with, you know, HbA1c, and, and I think, you know, we have to work on this, because it's not only him, but it's many more patients who probably think like that, and probably unspoken. And I think by, by better connection by, by being more involved in the impact of diabetes and how people deal with it, you know, we can take away these, yeah, these things, these defaults, that should not be there, I think.

Victor Montori:

Eelco, what a what an extraordinary conversation it is. It is wonderful, wonderful to hear not only of your thoughts as a researcher, but also as a clinician, and not only as a clinician, that takes care of the islet but of the care, that takes care of the whole person. There's a question from the audience about, you know, they've, they've noticed that generosity, empathy and human connection are essential to your work, both as a clinician and as a researcher. And the question is, what would you recommend to young researchers, I presume in addition to reading French poetry, to incorporate these values of generosity, empathy, and human connection, particularly in a context of both research and healthcare that do not seem to indicate very clearly that, espousing those values, those principles, is valued, is recognized, is encouraged. How would you encourage those things in the next generation?

Eelco de Koning:

So in general, I think, you know, I've always followed my heart and what I wanted to do, and sometimes, you know, I was told by my, by my superiors, he said, Eelco, you're not publishing enough, you know, you know, if you want to make it in the, in the, in the ranks in the hierarchy, I said, Look, you know, this is what I think is important, this is what I want to do. And if that means that perhaps, you know, I don't publish then, then that's the way it is. And I think by following your heart, and by, and of course, you know, sometimes even following your heart, you can make strategic decisions. You know, that that, because it's topics that really are close to you. And that perhaps there are different topics that are close to you. But there are also topics that are close to you that, that perhaps have more impact than, than others. So of course, there's also choices and some planning. But I think, yeah, not to let you, you know, I think young people say sometimes you go, you know, take this path, but I always think that if there is a path, it has already been made by other people. So also, yeah, take other paths that perhaps outcome are more uncertain, but at least give you enormous gratification. Because you're doing something that is really close to your heart, even when you don't see your paths already going there. And....

Victor Montori:

What a privilege, right to be able to, to be able to have a career that you can look back and say I followed my heart. I mean, it's, and it's also been a phenomenal privilege to have you today in our, in the KERcast. And, as with other guests, I would like to finish our conversation by asking you what's next for Eelco de Koning?

Eelco de Koning:

Okay, so what's next? So there's perhaps the biomedical Eelco, Yeah, and the biomedical Eelco is, is also an Eelco, who sees his patients in a consultation room, and we talk about all these aspects that we've been talking about today. And then they walk to the door, and they want to open the door and they asked Eelco or Dr. de Koning is there already, are you already close to a cure? You know, and so there is this biomedical Eelco that that wants to work on, or the team Yeah, it's not me. I mean, all the work is done by the team. I'm just a minor pawn that tries to, that tries to clear the way for other people to succeed, but there's this, you know, to start making insulin producing cells from stem cells. So the next level of transportation, so there's that Eelco. But then there is the the care Eelco that's, you know, that wants to touch people's lives in such a way that, that I can make an, or that we, as a team, you know, can make an impact on the lives of patients that we can reduce the burden of disease. And I think that's, within collaborations, I think we can we can really achieve a lot Victor and just what you said, but people will want to change guidelines. Yeah, as I said, that's what I want to put my shoulders under to, to achieve these kind of things.

Victor Montori:

Phenomenal. We've been talking with Professor Eelco de Koning from Leiden University Medical Center. And this has been the KERcast, produced by the Knowledge and Evaluation Research unit. You can read more about our work and about this KERcast at carethatfits.org. Eelco thank you very much, and everyone that joined us, we'll see you next time. Please take care.