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Interviewer: I think it might surprise a lot of people that if you have a surgical procedure, that sometimes the coordination of care before and after the procedure can be a bit challenging. But out to solve the problem is Dr. Benjamin Brooke. He's an Assistant Professor of Surgery at the Division of Vascular Surgery at the University of Utah School of Medicine.
This story is interesting for a couple of reasons. Reason number one is the coordination of care issue, which really kind of surprises me that it's not better. And second of all, this research study that you're doing is a little unique in the fact that it's actually involving patients. That's kind of a novel idea. Tell me about your research.

Dr. Benjamin Brooke: As a surgeon I've had a lot of experience where many times patients aren't well informed with their diagnosis, what they're coming to see a surgeon for. Then after they have an operation their transitioning back to their medical providers they've seen for a long time, but there's not great communication between the surgical team and the medical team. So I wanted to look at this a little more carefully and try to find out why some of these patients aren't getting the right coordination of care as they transition to the surgical team and then follow-up care after surgery.

Interviewer: Other than maybe inconvenience and confusion, are there other detriments to this lack of good coordination?

Dr. Benjamin Brooke: There is a potential for harm or for errors to occur when patients don't understand exactly what they are seeking treatment for, or while they're undergoing treatment, making sure they are on the right medications, they are following the right treatment plans. If they're not actually engaged in their care plan, that can lead to poor medical outcomes, or medical errors.
The second thing is that if patients aren't engaged in the process, I think they are also less apt to follow-up with the recommended treatment plans and that's clearly related to their outcomes.
The third thing, I should say, is that we feel that patients are going to have better experiences and have better patient reported outcomes if they feel like they are more engaged in the process and that's what we're also trying to look at. Just because the patient receives an operation and we feel like everything goes smoothly, sometimes the patients might feel from their perspective that things actually didn't go very smoothly and they had a very poor experience while they were in the hospital, or when they were trying to have follow-up care arranged.

Interviewer: What are some common problems when it comes to coordination of care that you've seen so far?

Dr. Benjamin Brooke: Sometimes when we're trying to explain to patients what they are going to be undergoing before surgery, there is a lot of times poor communication between the providers and the patients, and perhaps they might not understand fully what they are in for. Then after receiving an operation, they might not receive the right coordination to understand what they should be doing after surgery.
Should they be doing certain things when they go home? Should they be seeing their primary care provider within a short time after leaving the hospital? When should they follow up with their surgical team? There are a lot of things that we do when we're discharging a patient in that discharge planning process that I think needs some improvement and that's why we sought to look at this a little more carefully.

Interviewer: I have a hard time believing that a patient could come in for a major procedure like surgery and be that confused. Is it the patients just not paying attention, or are we not doing a good enough job of explaining, or both?

Dr. Benjamin Brooke: Well, it's a little bit of both. You could imagine a patient comes in for a major operation, and you're giving them a lot of information. They're trying to process it as much as they can, but clearly patients are stressed. They have a lot of things that they're thinking about. They might be worried about, "Am I going to die from this operation? Am I going to have a major complication?"
So a lot of what you tell them, I don't know if they actually walk away with. So I think we can do a better job with trying to focus on how to educate patients in environments where perhaps they're going to retain more information.

Interviewer: Now tell me about your research project in terms of using actual patients to be part of the research. You were explaining to me that they are actually going to be involved in the research, not just asked questions per se, but participants.

Dr. Benjamin Brooke: Correct. We received funding through an organization called PCORI, which is the Patient-Centered Outcomes Research Institute. It's a non-profit organization funded by the Affordable Care Act of 2010. It's funded by government money, but it's not tied to government funds.
The goal of this organization is to fund patient-centered research whereby patients are actually involved with designing the studies, and they are part of the research team. We're trying to form communities of patients that want to be part of our research team and what we're trying to do is to find patients who have had an experience with surgery, either as a caregiver or as a patient. Again, these are patients who are being worked up for an operation, or maybe they've already had an operation.
We want to find out what they're experience was. Did they feel like they had good access to care, or did they have a hard time finding a doctor to do an operation? And then after an operation, did they have good follow-up care? Did they have care coordinated between their team in the hospital and their outpatient care provider, such as a family doctor or an intern who might have been following them for the last 20 years?

Interviewer: So how could somebody who has fit the qualifications you said, somebody who has gone through surgery or is preparing to, if they've never done a research project, how can they design a research project?

Dr. Benjamin Brooke: Well, that's kind of the beauty of this. Patients can be as experienced or have very little experience with a research process, but what they can bring to the table is just their own experience. And what we're trying to do is to get enough patients that say, "This is a problem that happened to me," and develop common themes among different patients; and then design interventions to try to target those problems that they've identified. If we don't have the patients, we don't really have the ability to design the research.

Interviewer: I was being a little flip, I guess, earlier when I said is it the patient that doesn't get it, or are we not doing a good enough job explaining it. But there's not a lot of research that even tells you if either one of those is the case. You might find something else entirely.

Dr. Benjamin Brooke: I think this is the future of research, in that we are trying to look at things that are very important to patients, and things that are going to be affecting patients in a way that may be as physicians, providers, or even researchers, that we're not recognizing.

Interviewer: I think anybody who has been in any other sort of industry would kind of chuckle at that notion a little bit. But that's been a problem with healthcare, not involving the patient. Am I correct on that?

Dr. Benjamin Brooke: Right, I think it's this ivy tower mentality that we have all the solutions and we're the smartest people to address these problems. Well, in actuality there's a lot of problems that are just not being addressed, and patients are walking away not satisfied with the level of care they're receiving.

Interviewer: Yes, the customer would be another way of putting it as well. So if somebody is interested in participating are you actively looking right now?

Dr. Benjamin Brooke: Yes, we're having focus groups around the valley. We've had a couple so far, and again, we're trying to basically engage patients in this process. We have a website that we can provide a link to. We're just trying to get a good spectrum of patients from around the valley.
We are also looking at engaging patients up in surrounding areas, such as Evanston, Pocatello, Rock Springs, Vernal. We really want to get a nice broad representative patient population from around the state and around the region.
The other thing I should just point out is that Utah is very unique in that the University of Utah services almost four surrounding intermountain states. We are a tertiary medical that really gets a lot of patients that come from 200 to 500 miles away to receive care. And so, a lot of these problems that I brought up are really sort of exacerbated by these patients that might have to travel 300 miles to come down from Idaho to receive care but then they go back and it's hard to maintain that continuity of care.

Interviewer: Are you pretty excited about all this?

Dr. Benjamin Brooke: Yeah. I think it's a great project, and I think there are a lot of things that we can do to hopefully improve this care coordination problem.

Interviewer: Thank you very much for taking time and explaining your research, and good luck.

Dr. Benjamin Brooke: Thank you.

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