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Dr. Falk interviews Celeste Lee in this special episode on patient engagement. Celeste is described by Dr. Falk as an “astonishing leader and ferocious advocate for patient engagement,” and discusses the process of getting patients to become advocates for their health. She is also joined by her husband Daniel Lee, PhD on a discussion about being a caregiver and including patient engagement in the health system. Celeste’s work in patient engagement spans the University of Michigan, the Kidney Health Initiative, and the Patient Centered Outcomes Research Institute (PCORI), and she draws on her own experience as a patient with vasculitis, which she also relates here. Dr. Daniel Lee is a Professor and Chair of Health Policy and Management for the Gillings School of Global Public Health.

Celeste and Daniel Lee, PhD / Photo by Rochelle Moser

“The hardest part about any of these illnesses is the isolation and the loneliness. No matter what disease you’re being diagnosed with, I would say that is the largest obstacle.

The only way we can really work with that isolation and loneliness is to partner with our doctors, with our health care team, and more importantly to learn how to manage and know our disease and help others learn how to manage it… That’s what I would tell my 17-year-old self. I’d say: Learn, do as much as you can, talk with your doctors, and do as much as you can to reach out to help other people.”

– Celeste Lee

Ron Falk: Hello, this is Ron Falk for the Department of Medicine at the University of North Carolina. Welcome to the Chair’s Corner.

Today we welcome Celeste Lee, who has done tremendous work in the genera field of patient engagement. She is a member of the Kidney Health Initiative, which is a public-private partnership between the Food and Drug Administration – the FDA, and the American Society of Nephrology, and is on the Board of Directors, and with the Patient Centered Outcomes Research Institute or PCORI. She has played a role there as well. What is very interesting about Celeste Lee is that she has been a professional in academic environments, but she’s also been a patient with vasculitis and is seen by Dr. Jenny Flythe who is a nephrologist at the UNC Kidney Center.

Joining Celeste today is another interesting human, Dr. Daniel Lee, who is Celeste’s caregiver, but Daniel Lee has in his other life is the Chair of a major department in the UNC School of Public Health. So our conversation today is going to focus on patient engagement, what it means and how patients can become active participants in their care, and also what it means to be a caregiver and the importance of a caregiver in a patient’s care. Welcome, Celeste and Daniel.

Celeste Lee: Thank you so much for having us here.

Daniel Lee: Thank you.

Falk: Celeste, you and I have known each other for a while, and during that period of time I have come to know you as an astonishing leader and a ferocious advocate, for the process that is known as patient engagement. What does that word actually mean to you, what does “patient engagement” mean?

Celeste: Thank you so much. Nowadays people are throwing around the words patient engagement, patient activation, patient-centered care. There’s a lot of funding that’s available for these types of efforts but they get interchanged in a lot of different ways.

So the way that I like to really acknowledge or to set the stage for the true definition for patient engagement is two parts. One is that there’s a way that patients can be personally engaged. And that means what is it mean for me as Celeste, a patient with vasculitis–and I’m also on dialysis: What does it mean to me to be actually be engaged my health care, to actually understand what is my illness, and how do I care for myself? To be engaged and partner with my doctors, with care providers, with nurses, with patient care techs. How do I do that? That’s a level of personal engagement in patient engagement.

The next level is what I would call public form of patient engagement. That means someone like me, who’s worked really hard to be as engaged and activated in my care as I could be, to make sure I truly understand I’m the expert of my own health. And then how do I take those skills that I’ve learned in self-management, the self-efficacy skills, and how do I help others and other patients learn how to adopt them themselves. That’s my public advocacy or public patient engagement arm. How do we get other patients to be engaged in helping physicians and researchers and everyone learn how to develop, design questions, and ask the right questions that are really meaningful to patients. It’s almost like advocacy: teaching people how to become better advocates for other patients like themselves.

Transcript continues below. See individual tabs to jump to specific topics.

Falk: What advice would you give to a patient, an individual patient, to become an advocate for themselves, to eventually be engaged in the physician-patient relationship?

Celeste: This is so perfect—just this last week: I’m from Boston, and when I was in Boston, I used to be an actress for fun and did regional theater. It was a wonderful place to be and I met a wonderful woman, good friend for about 25 years. She just emailed me – or actually did a message to me on Face Book and was just diagnosed with Stage IV breast cancer and she had been healthy her whole life, but didn’t have access to health care. And she said, “Celeste, I know you’ve been doing this for a long time. I know you were on dialysis when you were here and I really admired that. Can you help me figure out what to do because right now, I am stifled. I don’t know what to do.” And she’s very smart. And so we had a conversation and I said, “This is what you need to do:

One is you need to take a breath, you need to breathe. And you need to understand what your diagnosis was. And understand that that diagnosis is not who you are. What the treatment they’re suggesting are not necessarily what you’re going to do right now. What you really want to do is you want to learn and treat this as an adventure. You’ll want to start to partner with your physician. Ask questions. Bring a notebook. If you can, bring someone with you, because when you hear someone talking to you, a physician, you hear wah wah wah vasculitis wah wah wah rituximab. But you don’t hear all these other things, and you need someone to be there with you. But to take the tools that you have, to help capture the information that you might miss at first.

When I was diagnosed, I had a wonderful young physician. He literally was just starting his practice. He said to me, “Celeste, you’re going to have a really long journey in your health care. We’re diagnosing you with Wegener’s (or GPA vasculitis) – it’s also affected your kidneys. What I think you need to do is you have a choice to either be in the passenger seat, or to be in the driver’s seat. Because you’re the one who’s always going to be driving, and we the health care providers, people are going to be coming in and out of the car all the time. You are the one who’s really the driver.” That’s kind of how I’ve led my life and that’s why I help other people, is to try to get the driver’s mentality.

Falk: If you’re the driver, how do you help physicians know that they are passengers?

Celeste: The way that we help physicians, I talk about partnership. So let’s just say, I just went to clinic with you and you’re doing a second opinion for me from somewhere around the country. What I would say to the physician: You’re the expert of what’s in your toolbox to help me. You have all these wonderful tools. You know how to use them and when to use them. Now I’m the expert of myself: I know who Celeste is, I know my experience. What I’d like to be able to do when I first meet with a physician is say I’d like to create a partnership with you, because what I really need is for someone to partner with me, to help me know what are the tools that are available, what are the best ones for me, given what’s going on, and then I can tell you about who Celeste is, where she is in her life, and in my own way have assessed the risks and benefits I’m willing to take for me and you helping me make the right choice.

Falk: How do physicians usually respond?

Celeste: They respond so wonderfully. They’re so happy to have that happen. They want to be with someone as a partner. As you know, patient-centered care is really starting to come into the lexicon of health care. There are a lot of patients who are starting to understand it and learn about it. What they kind of end up doing is being a little bit disrespectful and a little hostile towards physicians in health care. If they find something on the web, they might bring it to the doctor’s office, and instead of saying, “What do you think about this?” they’ll say “Why didn’t you tell me about this? You missed this.” In kind of a hostile way. That’s not what this is about. This is about you and I being partners and engaging with each other because together, with this partnership, the unique partnership that it is, we should be able to make the best decision for me, which physicians want to do. So I’ve always had very positive responses from my health care team.

Falk: How do you get patients to be willing to say all the things that you’ve just said? It’s hard to say those things at opening stance at the beginning of care.

Celeste: It is, it’s really hard to say it. What you want to do is you want to have the physicians and the health care team to be open to understand that they want to partner with them. It might not be the patient who initiates that type of relationship. It’s where the health care provider initiates that relationship saying, “I’m very interested in what your thoughts are, how you feel, and how I can provide information for you that makes it helpful for you to understand that the disease process you have is complicated. The words are complicated, but we want to make them as accessible to you as possible so that we can work as a team.”

Falk: What would you have told your 17-year-old self? You were diagnosed with this disease when you were 17. And now many, many moons later, what advice do you give to yourself?

Celeste: That’s an excellent question, because quite honestly, that’s what motivates me to keep doing the work that I do. When I was that 17-year-old girl in upstate New York, I was isolated, I was alone, I didn’t have anybody who knew about what was going on with me. What I would say to her, is what my physician said to me. He was the most instrumental person in my life. It was Dr. Riccardi, a young rheumatologist who came from UCLA and he’s the one who said Celeste, you’re young, you’re smart. Health care is going all these different ways. I highly suggest that you read this book called Anatomy of an Illness by Norman Cousins. He’s a wonderful writer. He basically said, and this is what I’d say to her: This is your life. It’s your life to learn and to not give up on, and to treat it as an adventure. And help others do what you do, connect with them.

The hardest part about any of these illnesses is the isolation and the loneliness. No matter what disease you’re being diagnosed with. I would say that is the largest obstacle. And sadness that comes into chronic illness. The only way we can really work with that isolation and loneliness is to partner with our doctors, with our health care team, and more importantly to learn how to manage and know our disease and help others learn how to manage it. To create value and meaning in our lives. That’s what happens when you get disease. That’s what I would tell my 17-year-old self. I’d say: Learn, do as much as you can, talk with your doctors and do as much as you can to reach out to help other people.

Falk: As you grew from a 17-year-old with a new diagnosis to treatment, eventual kidney failure. What would you have told yourself along the way, all the ups and downs, that you could remain as engaged in your care as you have been? That’s the remarkable part of your journey is that instead of becoming isolated, you have done exactly the opposite. That phenomenon is unusual, because as illness waxes and wanes, patient engagement can wax and wane as well. What do you tell yourself in the down times?

Celeste: This is what I tell myself in the down times: they are down times. It’s like the ocean: you know the ocean’s going to come in, but you know it’s also going to go out. When you have any chronic illness, there’s going to be times that you’re lonely, you’re depressed, you’re isolated. You let yourself feel bad because you know that the water’s actually going to go back out again and you’re going to feel a little bit better. But I can tell you this: no matter how ill I’ve been, or how I felt not very good, the thing that has always given me reason for living, for choosing to keep going, has been my interaction with my other, fellow patients. To not make it all about myself. Even when you want to do that, by interacting with other people, it’s a distraction – you get away from yourself and you’re not navel gazing any longer. You go through these ups and downs in your journey.

This is what’s missing: We don’t give patients opportunity enough, we don’t ask them enough to help. Because when you ask them to help, to talk to another patient, when you ask them to say, “We’re going to be changing the way we’re setting up our clinic and we want to make sure that we’re doing it right. Would you mind being on this work group with us?” By asking that patient, you are giving them a reason not to be isolated and alone.

Daniel: Well, Celeste has always been very independent. You used the word ferocious, that’s the way she is. So I didn’t become a true caregiver in terms of the time I spend on helping her daily activities until about a year ago, when she fell in November. I don’t have any magic. I think I was blessed. When I was growing up, my parents trained me to be independent. I remember when I was in junior high school, when I ripped my pants, I fixed it myself. When my parents were busy with their restaurant business, I cooked my own dinner. I learned to do many things myself. I spend a lot of time taking care of Celeste, helping her with daily activities—even before this I was a cook in the family, I did a lot of cleaning, I enjoyed it. So those skills came naturally to me.

The most difficult part about caregiving is really the psychological state of your mind. When I wished that Celeste had not fallen and broken her bones, when I wished that we were able to take a walk, holding hands in the neighborhood instead of me pushing her in the wheelchair. What I’ve hoped that Celeste could…like what we did before, going to the mountains, to park the car and hike on the Blue Ridge Parkway, enjoy the scenery and fresh air, talk about our lives – yes, I do, every day.

As Celeste has told you, what has driven her forward is her relationship with patients, her strong will to want to give. What drives me forward is my understanding that whatever journey I’m on, I will learn something. I will be able to grow. So when I’m down, when I’m feeling what I wish was experiencing, I stop and ask myself, am I learning anything? Is this an opportunity for me to learn? If the answer is yes, then I say, Okay, this is good. Working with Celeste and being a caregiver, in a way because of who she is, and what she wants to do, makes my caregiver role easier. She wants to make a difference and I can see the value of her work. I think we share that desire to make a difference. I’m sort of her extender in a way, to help her make a difference, and that’s meaningful.

Falk: When somebody is on dialysis, the whole family ends up being involved with that process. It’s true for so many illnesses. What do you think is the best way for a caregiver to really maximize the things that Celeste was describing earlier? That there’s somebody else in the room with the physician and the patient so that visit is maximized.

Daniel: You are a pair with the patient, as a family accompanying Celeste on physician visits. Celeste has grown a lot. She has a tremendous amount of medical knowledge. It’s amazing her understanding of medications, procedures, test results. I think her medical knowledge is probably comparable to a physician who just came out of medical school. So I actually play a very little role in understanding and communicating with physicians. What I see the role I can play is to listen first, observe the back and forth between her and the physician, and then ask questions that they have missed. That’s sort of my strength. I like to ask questions, and some of the questions are stupid, but when I don’t understand I like asking questions. In a way I allow Celeste to be who she is, to do the best she can do. It’s really pairing up with the patient.

Celeste: Yes, I also think that Daniel and I are very good partners. It’s the same thing as a partnership with your physicians. My goal is always to put the humanity back in health care. But when you look at the caregiver and the patient’s relationship, it can be challenging. As Daniel said, you’ve now changed the dynamic. You’ve entered this level of illness into our relationship. Even though I’ve had this going on a long time, I was able to do it all on my own, I didn’t really need Daniel to be there. But I now need Daniel to be a part of what I do because I’m functionally disabled, which I’ve never been before. That’s something that is so new to me, and new to him, so when you have a care partner and the patient, they have to redefine the relationship. How a physician interacts with the caregiver and the patient is also different and new. It’s all about being open and honest and having real conversations about how we can support each other in this relationship.

Falk: Celeste, you do know far about your disease in general, about dialysis as well, than a lot of the physicians who you may run into. Certainly in an emergency room, many primary care folks, sometimes specialists in rheumatology and nephrology. How do you help the physician, the nurse, or the pharmacist, how do you help educate them in this engagement approach?

Celeste: We just relocated here from Ann Arbor last year and we were there about five years – before that we had been in North Carolina. I went to the University of Michigan and I was able to lead and develop a patient-centered care program for adult services for the entire health system. That was specifically for the point of clinical care, it was for research and also for education. It’s absolutely asking that question, as a health system, how do we actually get our physicians, our care providers, our nurses, to understand about patient-centered care?

Instead of having a health care system system-centric or provider-centric, where we just kind of plugged the patients in to what we’re going to do, we actually started patient-centered. To get true patient engagement, you as health care providers if we want to improve outcomes, and we want patients to become more engaged, how do we reflect back on ourselves and look at the way that we bring them in and talk to them in the clinic? How are you making it a much more open environment for the patient to be engaged with you? How do we set up our clinic – do we embed peers in that clinic so they really start to understand their illness and care? How do we as an inpatient floor, how do we do our rounds, so that all of your aren’t hanging out outside while the patient’s trying to listen really hard on what you’re saying out there. But you have that conversation with the patient as opposed to bringing everybody into the room and actually engage the family and the patient in that rounding process. So not only are you marrying to the patient, but you’re also marrying young doctors-to-be how to actually do this work. It’s really up to the attendings, the senior physicians to start to mirror what it is you need to do. When I tried to train, I did a lot of inservices for physicians to talk about: how do you operationalize this?

“I don’t have time” – that’s the biggest barrier. I absolutely understand that. One thing I can tell you, is that if you’ve got 10-15 minutes, it can feel like 30, or you can make it feel like 2. It’s all about your interaction with the patient. There are tools that we can use to help physicians, nurses, and a system understand how to actually change the way we do our business in a way that encourages patient engagement.

Falk: Let’s take a moment and list some of those approaches. You’ve already named one, which is the reality that on the inpatient service, in teaching hospitals, the physician is with a gaggle of other physicians, talks extensively about you, you can’t hear it, and then they emerge as if by magic through an otherwise closed door. It must be infuriating.

Celeste: You know what it is? It’s the isolation again. It’s almost like, this is about you, and you’ve got all of these brilliant minds coming together to talk about you and you’re not a part of it. The one person who’s missing in that conversation is the patient and the patient’s family.

Falk: So you’d have rounds right there.

Celeste: Right there at the bedside.

Falk: What else would you do?

Celeste: With those rounds, I’d also have opportunity to do multi-disciplinary team rounds, so that you have all of the team, not only physicians, but you would have nurses, respiratory therapy, OT, PT, care managers. Instead of doing that in the break room, to actually do that at the bedside. What that does – a lot of things happen. One is you’ve got the family and the patient there. So as the team is talking about what they’re going to do that day, they may be able to chime in and say, “You know, I did that yesterday already” – so they can help with safety and quality. And also the patient and the family hear what the plan is for the day. The most isolating thing in an inpatient bedroom is, “What’s happening today? When am I going to get to go home? Nobody’s told me. I don’t know what’s happening.” But by listening and being a part of this conversation, they actually understand what’s happening today. They’re part of the plan, they hear it and know it. And I think that’s really important. You’re going to see that the thread that goes through this is engaging the patient and family into a lot of the conversations that we have that we normally

Another opportunity in an inpatient setting is when nurses do their shift change. The nurses are coming off, others are coming on, they do their transitions. They say they “hand off” the patients, but to me it’s “hand over” a patient because when you hand something off, you’re shaking your hands and you’re done. When you hand over, it means I’m entrusting you with the care of my patient. I’m handing it over to you. You could also do that at the bedside. One nurse introduces the other, the one nurse invites the patient and the family to be part of that transition but ask them if they can keep all their questions until we transfer all of the information that we have so we don’t lose it. The patients and the family are listening. It helps in the quality and safety. But most importantly, it creates a relationship for the nurse and the patient and the family. That’s another way of engaging the patient in the inpatient setting.

In the outpatient setting: I’m a firm believer that we are missing the opportunity to embed peers in our clinical practice. We have so many patients who are type 1. So you have an endocrine clinic, you have a clinic day where a number of patients have just been diagnosed with type 1 diabetes. We have a number of patient advisors which we’ve brought on, patients with type 1 diabetes who are really engaged, they understand about advocacy, we’ve trained them in peer mentoring and they come on to our clinic and they have a card. It’s a card from the University of North Carolina Diabetes Clinic Peer Mentor. This is not a paid position, this is volunteer. These patients come in, one or two days a week in the clinic.

So when you have a new patient who is being diagnosed with type 1 diabetes, a peer can knock on their door and say “Hey, my name is Celeste, I’m also a type 1 diabetic, I’ve been one for five years now. Here’s my card. It’s got my email, my phone number – please feel free to reach out and call me after you’ve gotten your diagnosis and talked with your doctor. I’d love to help you at the beginning of your journey because I know it can be really hard.” What does that do? It helps fill the time as the patient’s waiting in the room, talking to someone that’s meaningful for them. It also helps them feel they’ve got the same “fist pump,” same handshake. That way when they’re listening to the doctor and might not catch everything, but now they have this card of someone who is going to help them get on the right journey for becoming an engaged patient who is type 1 diabetic, which we know could really help improve their outcomes.

Falk: When you are trying to get other patients to get involved, your advocacy role, how do you convince patients to want to be peer advisors?

Celeste: You know what it is? You ask them. Nobody asks them. If we ask them, they’re like I would really like that. The physician can help identify a patient who they think might be a good peer. Some of the best peers are the ones that are least compliant, quite honestly. They’re noncompliant for a reason. If they get matched up with a peer program, that person’s going to start to learn how to be a peer.

We get referrals, a couple patients we think would be good. Or maybe a standard practice is that in the paperwork that they get handed, one of the things that they get is on peer support and saying we have this program. So they can start off as receiving being a peer, but then they also have the option of becoming a peer.

Let’s say we have somebody who’s identified: we just ask. And say would you be interested in doing this? They say “Yeah, tell me a little more about it.” So they share what it’s like to be able to help somebody else, you talk about the isolation and loneliness, the tools and techniques you’ve learned to use to manage, what are some of the gifts that you bring to this experience of being a diabetic. How do you think you could help somebody else, and what do you think the challenges are?

The main thing is to ask and then to train. To teach them and have them understand what their expectations are. What cannot happen is if you’re a physician and you’re interested in changing something in your world, and you want to engage a patient, you cannot just take your patient that you know is a really good patient, and then ask them to come along and do something with you – without setting expectation, without training them and teaching them about the language. It’s really a process that, as an organization, you need to actually create a way in which to educate these patients, to be a part of a more systematic way of being public engaged patient.

Falk: Daniel, you’re a chair of a major department in the School of Public Health who trains young humans to become hospital administrators, or at least some of your trainees will. How are you teaching them to design a system where patient engagement is part of the deal?

Daniel: Yes, I’m the Chair of the Department of Health Policy and Management at the Gillings School of Global Public Health. I have to say that patient engagement should be a more important part of our curriculum. We teach a lot of hard skills, and I think we do a very good job of conveying these hard skills to our students. Hard skills are like financial analysis, statistical analysis, operational analysis. What Celeste has described I will classify as soft skills, understanding of human beings, human needs. The strategies to engage people, patients in this case, interactions with patients, as well as helping other patients to deal with their struggles and their illness journey. Programs like ours should pay more attention to soft skills, and we still have a long way to go to build patient engagement and people management skills into our curriculum.

Falk: Yes, I don’t think we do a good job with our residents in the Department of Medicine, teaching them these skills either. I think it’s a whole part of the educational process that has escaped enough attention as it needs. You’re right Celeste, I’ve used the word patient-focused or patient-centered a lot, but it’s not clear to me that we’re really achieving that. Everybody worries about patient satisfaction, but it’s not clear to me that patient satisfaction scores actually equate to what you’ve just described. How do we change our environment?

Celeste: You’re absolutely correct – what ends up happening is that when we talk about patient-centered care that that promotes patient engagement is a process that should sit in the office of clinical affairs, because nothing can happen unless we are walking hand in hand with the administrators on changing a system. It’s a system and a practice that are going to allow us to engage these patients, to improve our outcomes. People really think about it as customer service, patient satisfaction – they’re trying to figure out the tools to evaluate how these things work. But what I tell people is that’s not what we’re doing. When you’re talking about customer service, patient satisfaction, especially with value-based purchasing, it’s incentives. For me, it’s what’s the carrot to get people to do this work? Right now it is value-based incentives. You’re doing things to the patient, and you’re doing things for the patient. That’s how we set up our practice. You’re talking about, how’s our parking? The cafeteria? The quiet space. All those things are important, but as administrators and people who are running a business, which we are, what can we do to and for the patient to improve those things.

What I’m talking about is something completely different. I’m talking about what can we do with the patient, and the caregiver, to not only improve outcomes, but to truly make the health care experience and what it is that we’re doing as physicians and administrators better? To have our patients with diabetes improve and not end up on dialysis? How do we actually have that quality and that safety start to be improved, and by having these people get engaged and part of the team, it’s a very systematic way of doing it. It’s bringing on a whole group of people and training them to be your team members.

Falk: Celeste, how has your work helped you as a patient, and as a person?

Celeste: It’s given me an absolute meaning and value to my life. I don’t know what my life would have been like – this happened to me when was 17. But it gave me a purpose, it’s given me meaning, and I have to tell you it’s given me such glorious benefit of living.

I feel like I have met incredible people in my journey, and I feel like we’ve made a difference, meeting all the other physicians, nurses, and patients. All of us have made a difference. What is this life, really, other than trying to live it in a meaningful way.

I was handed a gift at 17 to say, yes there’s going to be some suffering. Yes, there’s going to be some struggles, but we’re going to give you a direction, we’re going to give you a map, and you’re going to go for it and you’re going to have an incredible life.

For me, it’s meant a real meaningful life. I’m 51, I don’t know how much longer I have because I have a lot of complications going on. I don’t say that in a dramatic type of way, it’s the reality. The reality is we all could get hit by a bus tomorrow. The only difference is I see the bus behind me, I see the lights—I just don’t know when I’m going to slow down and it’s going to speed up. That’s the only difference is I see it and I know its existence.

I’ve been so fortunate to have had the opportunity and the career that I’ve had to intertwine my personal and my professional.

Falk: What an inspirational thought. Celeste and Daniel, thank you so much for spending time with me today.

Daniel: Thank you.

Celeste: Thank you very much. And as I was going to say, I have these 2 chairs of 2 departments! I hope UNC is going to be the leader in patient engagement within the health system.

Falk: Solved.


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