And, as with any job, a person’s ability to do the work required of their chronic condition (or, more likely, their two or more chronic conditions) fluctuates. University of Minnesota researcher Nathan Shippee is creating tools that can help providers understand and navigate patient complexity. “How we deliver health care can really either make it a little easier for a person to manage things or a little harder,” said Shippee, an associate professor of health policy and management in the university’s school of public health.
Using a scientific approach, he and his colleagues are trying to understand the lived experience of patients — and not just in the physical therapist’s suite or dialysis clinic. STAT spoke with Shippee about his project to document what happens to patients outside the health care system and link it to their outcomes. This interview has been edited for clarity and brevity.
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How do you explain what you do to someone at a dinner party or to a stranger in line at the supermarket?
Well, most of my work, practically speaking, is focused on how we organize and deliver services for people who have physical health, behavioral health—that is, mental or substance use disorder—needs. A lot of times, my work also falls into the realm of, “Well, you have these things,” but in addition, you often have people who have social factors that also complicate their care. So, quite often, things like unstable housing and homelessness, for example. Actually, we organize and provide the services.
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How did you come up with this project?
When my wife and I moved to Minnesota, I started as a fellow at the Mayo Clinic, working with a doctor named Victor Montori, who is well known in the field of patient-centered care for people with chronic illnesses, especially. And then as I continued to work beyond the fellowship at the Mayo Clinic, that was just one area that I started to focus on.
There’s a thing we talk about in chronic care called “patient complexity.” And complexity is more than just being complicated. there is a whole theory around complexity. …So what I and some other scientists have done is really try to say, okay, what happens if you actually get complexity right and apply it [to patient care]?
And then you start to realize that actually, patients’ lives are complicated by all kinds of systems around them: their family, their work life, their work history, their lived history, and health care as well. The way we deliver health care can really either make it a little easier for a person to manage things or a little harder. Health care can be accessible and it can be well planned or it can be less so. And to the extent that it’s less, it means that even if a person really wants to take care of their health, health care just adds more uncertainty to that person’s life.
Do you feel frustrated knowing that there are so many overlapping factors that are so much bigger than what you can address in one patient encounter?
I’m a PhD, so I have the advantage of not having to really worry about someone’s life and how I’m helping to manage it as if I were a provider. But I work with many providers. And one of the things that I think is scientifically interesting but also really daunting is that things don’t always complicate someone’s life and their care in ways that you would expect from a simple perspective. Some of the things we hear about people experiencing homelessness: they don’t have a place to store their medications.
But if you use the shelter system, usually, you can’t stay there all day, and so you have hours to fill and also, you have to handle your meals. If someone is dealing with chronic diseases, like diabetes, for example, where diet can make a big difference in how well you control your diabetes, and at the same time, you have little to no income, it’s really hard to eat well. People with diabetes experiencing homelessness are not stupid. They’ve taken all the patient education material and they know there are a lot of things that are not good about their diet, so you’re adding stress to that person’s life.
Why did you decide to focus part of your work on chronic disease?
Chronic disease, basically by definition, is something you can’t cure. He will not leave. And that means it can be quite exhausting, quite tiring. …If you think about all the people who have chronic conditions, and I mean the most common chronic conditions, multiple chronic conditions — the largest number of people actually have more than one — and how long people live with those conditions, to me that represents a really big challenge.
What interests you about end-of-life care?
The end of life is the culmination of long-term chronic conditions. There has been work done that talks about people living with chronic illness in a ‘disease career’. It’s like retiring from this career. And now we have to say, “Well, right now they’re on 15 medications, and we think in the next 2 to 5 years, at most, this person is probably going to die. And so some of these things that we’ve been asking them to do, when can we tone them down a little bit?” And this is a very complicated dance.
And if there’s a way that, as a scientist, I can say, “This is a model that we tried and it seemed to help, in terms of how people experience their care or how their loved ones felt that the quality of death their process was better’, then this is worth doing.
Can you explain a little bit? Your cumulative complexity model?
It started when I was working with colleagues at the University of Minnesota at the time who had some interesting data on people using different public insurance programs—typically, low-income people on Medicaid and other state programs in Minnesota. …And at the same time, I was looking at what I would call typical Mayo Clinic patients, that is, people who had a lot of health problems, but not necessarily as many of the kinds of social problems and social service needs that people in those public insurance programs require.
They are two really different populations, so what is the common thread? And I was looking at both groups and I realized, if you step back a little bit and go a little bit more abstractly, they’re both facing these challenges. The challenge comes from the fact that there is a lot of potential work to do, both as a patient and in your life.
On the other hand, there are people who can handle a lot of work and it’s okay, they don’t stress, they’re fine. They don’t fail. They don’t forget. They are able to do it. So there is another factor. Everyone has a finite ability to accomplish. If work, in general, can be summed up as anything that requires time, energy, or attention, then skill is anything that affects your readiness, motivation, and ability to accomplish tasks or do work.
How does this translate to health care?
A classic example of disrupting the balance between work and ability would be a missed appointment. Now, maybe that’s because you forgot and you don’t have enough layoffs or someone around to remind you. maybe you missed it because you were really, really depressed that day and just couldn’t move to do much. Or you didn’t take a medicine when you were supposed to. There is a mission for you and, for whatever reason, you haven’t had the readiness, motivation, or ability to do it.
This reminds me of Christine Miserandino’sspoon theory,” this idea that people living with chronic illness have a set number of “spoonfuls” (energy, capacity) per day and must be judicious in how they use them.
I do not know if [the spoon theory] he was there when we did this. he was quite young. They’re really kind of complementary ideas. It’s funny because for people who know the model, we would even use the language of the model just to say how we’re doing.
One of the things to keep in mind is that there were models or approaches to patient complexity before. And what I wanted to do with that was make a working model. So it’s a continuous thing, more like living – where that interaction between those things then affects how you access and use care and how you do your own self-care, and then this in turn will affect your results.
We hear so much about how people’s experiences within a health care system vary so much based on their identity — race, gender, disability, etc. How does this item work on it? Do complexity models inherently recognize intersectionality?
I don’t think it’s ever physically incorporated. That is why we must always be intentional. Back in 1971, a Welsh general practitioner named Julian Tudor Hart came up with this thing he called the law of inverse care, which is that the availability of quality medical care is inversely proportional to the needs of the population it serves. So people who often need care the most have the hardest time getting it. [Cesar Gomes Victora and colleagues] Later came the reverse equity hypothesis, and it’s the idea that any new intervention, any new improvement, any new program we introduce, will benefit the most privileged first.
If you just develop a program and don’t think about it and build it…
