Alan Pitt: Good morning, this is Alan Pitt. Today, I have Dr. Kasey Boehmer. She’s at the Mayo Clinic. Kasey and I had the good fortune to come together at a recent health leaders event. I’ve gone to health leaders events for many years, and they have a lot of smart people from many healthcare systems come together to talk about problems they see and potential solutions. I was really intrigued by Dr. Boehmer’s presentation, and I thought I’d have her on. Welcome, Kasey, and thank you so much for coming on Healthcare PittStop.
KB: Thank you so much for having me. I’m really looking forward to this discussion.
AP: Before we start, can you tell me a little bit about you and your personal story? I know you work with chronic illness and how people perceive dealing with chronic illness.
KB: Yes, so my background—professionally, I’m an Assistant Professor of Health Services Research here at Mayo Clinic. I lead a program in a research unit called the Knowledge and Evaluation Research Unit. Broadly, our unit focuses on creating care that fits patients across all spectrums of conditions and situations. But the program that I lead and that I focus most closely on is called Minimally Disruptive Medicine, which really focuses on care of patients living with chronic illness. We’ll get more into the details about what that all entails. From a personal side of the story, I had been conducting this work for about five years, since I was diagnosed with a particularly intrusive chronic illness called interstitial cystitis. It’s a chronic inflammatory bladder condition that causes both noticeably ongoing chronic pelvic pain as well as other symptoms such as urgency and frequency, which is like the seed of the pelvic pain.
KB: The period around my diagnosis was an interesting time for me, because I had grown up and wrestled with recurring illnesses my whole life, but they were very much just kind of the normal day-to-day problems. I also had asthma. I had severe and life threatening and allergies that I’ve dealt with my whole life, and I’ve had a chronic heart condition my whole life. But these problems were just my normal everyday reality. But when I had that diagnosis of interstitial cystitis, I started to think, “Wow, now I am living the work that I’ve been doing. I am part of the population that I am so passionate about serving.” That realization really made me pause and reflect, and think about how I can serve this part of the population through not only the academic skills that I’ve gained over years, but also through my personal experience. How could I create a meaningful bridge between patients and patients’ lives, and the work of research in the healthcare systems?
AP: What really caught my attention at the meeting was how your presentation was framed against the person just before you. The person just before you did a very standard presentation from a healthcare system, talking about how to increase patient compliance with taking their drugs, right? We as physicians think about compliance, “How do I get them to take their drugs?” It’s actually interesting—the word patient has always intrigued me. This idea that you are a patient, that you are patient with your provider, that you’re there to kind of just listen to what they have to say and do those things. You kind of presented it in a much different light, which is, “How do we encapsulate the effort people need to put out to do the things that we as providers are asking of them?” Can you talk a little bit about that mismatch? How we as providers look at it, and how the patient looks at it?
KB: Yes. From a patient’s perspective, and in our research, we’ve studied this starting from a theoretical place. So, we studied the work of being a patient. What it actually takes to, as you say, have the effort put forth, to actually do the things that patients are asked to do. But I think it also starts from a meeting and understanding of priorities as well. So patient work is the things that we ask them to do. For example, taking their medication, coming to a doctor’s appointment, testing of blood sugar, adhering to an exercise regimen, dietary modifications. Those are all pieces of patient work, and they compete with the work of everyday life. So I think the example that I used in that presentation is, as a patient, I don’t get separate Outlook calendars for my patient work and my real life work—whether that’s my career or my family and the things I have to kind of do to take care of everybody. So it starts from recognizing that being a patient is work, and that it competes with other life work. How do we make sure that we’re on the same page and that the work that you’re being asked to do is actually in alignment with your goals, values, preferences, and context? Then, once we have that fit, how do we say, “Okay, well, how do we make sure that you actually have the capacity to take on the work that we are in agreement is fitting for your life and your situation?”
AP: I’m always a one to look for technology solutions to help us in our getting things done. I would imagine that measuring patient work and all of the ramifications for the patient in terms of how it affects their life, that that is hard to measure. How do you get at all of those things that if I ask you to take these drugs, and do this thing, how do you get it done?
KB: I think it’s important for this question to distinguish between patient work and what we call the patient treatment burden. So “patient work” includes the objective things that you’re talking about measuring: The medications, number of appointments, hours spent taking care of health, et cetera. “Treatment burden,” on the other hand, is the subjective experience of that work and its impact on people’s quality of life. So when it comes to measurement, there actually is quite a bit of work in the space and measured treatment burden. There are at least three measures of treatment burden out there now that are not disease-specific, so they can be used across conditions. Then there are additional measures that maybe are disease-specific measures of treatment burden. For example, there might be a diabetes-specific measure, but they are now these measures that can be used across conditions.
AP: Interesting. So I guess, I’m thinking in an ideal world, as a physician I might choose two different treatment pathways, and at the bottom was a score in terms of what I’m asking that patient to do. These are how many hours a week the patient would have to put out, or this is the burden on them, so that it bubbles up to the top of mind for me before I go to them and say that. Is that kind of what you’re envisioning, something to that effect?
KB: First we focus on user-centered design. We look at conversations as they are actually happening and try to understand how to support that. So we actually do have a discussion aid that’s specifically designed to support conversations about patients’ capacity and treatment burden. But we really have to look at the patient context and we have to look at the things that are being asked of that person and say, “Do these things make sense in that context?” Because, for example, if you take the scoring approach, you’re not necessarily taking into account what that means for that person in terms of the benefits. I can give you a really good example of my own story. The clinician I’m working with for my bladder condition is obviously here at Mayo. He is very familiar with our work about treatment burden, and we had a really important conversation about how concerned he was with a number of the pills I was taking. Some of these pills have kind of a complicated regimen. So I have to take them three times a day without food, so I’m having to time it two hours after each meal.
KB: So he was thinking, “That’s really high burden.” And we had this conversation where I said, “Actually, the dietary restrictions of trying to manage not eating or drinking acidic food is far more burdensome in my life. I have to travel the world and I can’t really always be guaranteed exactly what’s going to be available. I actually would prefer to take this more complex medication regimen and not have to deal with the diet on the road.” So what may be burdensome to one person, who has a completely different life circumstance than I do, may not be burdensome to me. That’s why we really believe in supporting this from a conversation aspect, rather than either side doing this on their own, the clinician scoring it themselves or the patient scoring it themselves. It really is important to think about these things at a meta-level and also support those conversations during visits, so people can walk away with what’s practical for them specifically.
AP: That’s super interesting. We talk about the idea of personalized care and we’re willing to spend tens of thousands of dollars for a personalized drug, but we’re not willing to spend the money to deliver a personalized treatment plan that may take minutes to talk through. And there may be actually lower-cost drugs or a lower-cost treatment plan!
KB: I would 100% support that. For example, the discussion aid I referred to, we’ve designed it, and it’s freely available on an internet so anybody can download it. There’s actually a toolkit now on how to use it in conversations, also freely available on the Internet.
AP: Do you have a website you want to refer to that people could find that?
KB: It’s www.minimallydisruptivemedicine.org, and you can look there. There is a lot of support there for these kinds of conversations and thinking pieces.
AP: Oh, perfect.
KB: So that would be available to people as well, through the www.minimallydisruptivemedicine.org link.
AP: Now, I can imagine that providers listening to this conversation may say, “Look, I don’t have time to have this conversation with my patient. I’ve got 15 minutes. How do I get this personalized care thing going with the time that I’ve been given?” Do you have a comment for them? What do you tell them?
KB: Yes. I think that’s a challenge everywhere we go. And it’s something I’m very cognizant of when we’re training people in these concepts and these tools. What I would say is that, in our pilot for the study, we were able to video record visits and compare conversations with the tool versus without the tool. And because of those video recordings, patients are able to look at these, and adding this tools made no difference on the time of the encounter.
KB: What is also interesting is, I can say that’s not from the design process as well. That what I noticed in observing conversations of clinicians having these conversations with the tool and sort of personalizing care. It gets information out at the beginning of the visit that is important for tailoring the plan.
KB: That helps both parties in the visit land on that information, oftentimes this information almost appears in what seems like an interrupting way in the visit. For example, a patient might say that she’s retiring and that’s all they say about it. But then as the conversation goes on, it’s “I’m retiring so I can take care of my grandkids, so now I’m going to have less time for exercise.” Another aspect comes up three more minutes into the conversation, whereas this tool really is the center of the conversation on, “Okay, what’s going on in your life? What’s going on in your healthcare? Are they working together or are they not? And let’s make sure that’s the playing field that we design your treatment plan for.”
AP: Interesting! Do you look to extend the conversation to the rest of the patient’s ecosystem? By that, I mean some of the financial burden, how that affects the way they look at it, maybe the family members who are affected by the treatment plan. Or is it really focused on the patient and their treatment plan as opposed to these other things that maybe influence the overall outcome?
KB: Sure. We definitely think that cost is an important component. Our research team has a group of individuals really focused on exploring cost conversations. How do they happen, when do they happen, and how do we support them happening? That work is led by Dr. Juan Pablo Brito Campana here, and you can find information about him on the Knowledge and Evaluation and Research website at the Mayo Clinic. What we’re hoping to do in that area is, there’s really not a lot of work being done just yet on exactly how to support those cost conversations. People are realizing they’re important and we need to support them, but the tools don’t always exist to do that. We definitely have a cost component, but we’re not necessarily thinking about cost in every single aspect of the patient’s care. And so we’re definitely looking at those opportunities. Our research unit has a video repository of over 2,000 videos from our past studies. So we’re looking at those videos right now to see what we can learn about cost conversations when they do happen, so that we can then create something that can better support them going forward.
AP: Yeah, I’ve become very focused on price transparency as something that is really lacking. The Australian Medical Association focuses on whenever they consent people or ask them about something risks, benefits options, and costs—I think we need to get into that. And the family, do you go and measure how this treatment plan will impact the family as well as the patient? I think they’re the untapped resource, really.
KB: Yeah, I think there’s absolutely a need to consider what works gets delegated to the family members as well. It hasn’t been as big a focus of study, but I have written a paper where we did look at videos related to caregiver participation and encounters. And the bottom line in that paper is that they really are not involved in the conversation to the extent that maybe could be helpful to understand how the treatment plan impacts them as well. So it’s definitely an area where more work can be done in understanding the caregiver’s workload and capacity as well.
AP: I really appreciate the time. I’ll definitely repost the website for patients and providers who are interested in using some of the newer techniques you have to get at some of these really important pieces of information in the care cycle. Any final thoughts for people who may be listening to or reading this interview?
KB: I think I would just tell people to be curious. So whether you’re a clinician who’s in front of a patient or a patient who’s going to see your clinician, be curious with each other about the underlying work that’s being talked about here in these spaces. And if you’re on the clinician side, be curious and dig deeper and try to use these tools—or just be cognizant of that work of being a patient. If you’re on the patient side, don’t be afraid to speak up, and just as I shared in my own conversations with my clinicians, don’t be scared to speak up about your viewpoint on the work that’s being asked of you and whether there are other options on the table to maybe make things simpler.
AP: Thank you so much for your time today, I very much appreciate it.
KB: Yeah, and thank you. It was a great pleasure.