{"id":18091,"date":"2019-01-10T14:38:20","date_gmt":"2019-01-10T19:38:20","guid":{"rendered":"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcasts\/celeste-lee-on-the-power-of-patient-engagement\/"},"modified":"2023-08-04T13:53:38","modified_gmt":"2023-08-04T17:53:38","slug":"celeste-lee","status":"publish","type":"episode","link":"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/","title":{"rendered":"Celeste Lee on the Power of Patient Engagement"},"content":{"rendered":"<p class=\"lead\">Dr. Falk interviews Celeste Lee in this special episode on patient engagement. Celeste is described by Dr. Falk as an &#8220;astonishing leader and ferocious advocate for patient engagement,&#8221; 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&#8217;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.<\/p>\n<!--[if lt IE 9]><script>document.createElement('audio');<\/script><![endif]-->\n\t<div class=\"wp-playlist wp-audio-playlist wp-playlist-light\">\n\t\t\t<div class=\"wp-playlist-current-item\"><\/div>\n\t\t<audio controls=\"controls\" preload=\"none\" width=\"1118\"\n\t\t\t><\/audio>\n\t<div class=\"wp-playlist-next\"><\/div>\n\t<div class=\"wp-playlist-prev\"><\/div>\n\t<noscript>\n\t<ol>\n\t\t<li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/03\/celeste-lee.mp3'>Full-Length Track<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-whatitmeans.mp3'>What is patient engagement, and what it means to Celeste Lee<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-patientadvice.mp3'>Advice to patients to become advocates for themselves<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-passengers.mp3'>If the patient is the driver how to help physicians know that they are passengers<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-advice.mp3'>Advice Celeste would have given her 17-year-old self<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-caregivers.mp3'>The ups and downs of being a caregiver<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-physicians.mp3'>Educating providers in this engagement approach<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-patientpeers.mp3'>How to convince patients to want to be peer advisors<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-healthsystem.mp3'>How to design a health system that includes patient engagement<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-meaning.mp3'>How Celeste's work has helped her in life<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/celeste-bonus.mp3'>*Bonus track: A promise from Drs. Falk and Lee?<\/a><\/li>\t<\/ol>\n\t<\/noscript>\n\t<script type=\"application\/json\" class=\"wp-playlist-script\">{\"type\":\"audio\",\"tracklist\":true,\"tracknumbers\":true,\"images\":true,\"artists\":true,\"tracks\":[{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/03\\\/celeste-lee.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Full-Length Track\",\"caption\":\"\",\"description\":\"\\\"celeste-lee\\\" from Celeste Lee &amp; Patient Engagement by UNC Department of Medicine: Dr. Ron Falk. Released: 2016.\",\"meta\":{\"artist\":\"UNC Department of Medicine: Dr. Ron Falk\",\"album\":\"Celeste Lee &amp; Patient Engagement\",\"year\":\"2016\",\"length_formatted\":\"41:15\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-whatitmeans.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"What is patient engagement, and what it means to Celeste Lee\",\"caption\":\"\",\"description\":\"\\\"celeste-whatitmeans\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"2:15\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-patientadvice.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Advice to patients to become advocates for themselves\",\"caption\":\"\",\"description\":\"\\\"celeste-patientadvice\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"2:33\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-passengers.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"If the patient is the driver how to help physicians know that they are passengers\",\"caption\":\"\",\"description\":\"\\\"celeste-passengers\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"3:27\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-advice.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Advice Celeste would have given her 17-year-old self\",\"caption\":\"\",\"description\":\"\\\"celeste-advice\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"4:18\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-caregivers.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"The ups and downs of being a caregiver\",\"caption\":\"\",\"description\":\"\\\"celeste-caregivers\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"7:15\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-physicians.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Educating providers in this engagement approach\",\"caption\":\"\",\"description\":\"\\\"celeste-physicians\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"9:47\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-patientpeers.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"How to convince patients to want to be peer advisors\",\"caption\":\"\",\"description\":\"\\\"celeste-patientpeers\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"2:38\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-healthsystem.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"How to design a health system that includes patient engagement\",\"caption\":\"\",\"description\":\"\\\"celeste-healthsystem\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"5:08\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-meaning.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"How Celeste's work has helped her in life\",\"caption\":\"\",\"description\":\"\\\"celeste-meaning\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"1:41\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/celeste-bonus.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"*Bonus track: A promise from Drs. Falk and Lee?\",\"caption\":\"\",\"description\":\"\\\"celeste-bonus\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"0:40\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}}]}<\/script>\n<\/div>\n\t\n<div class=\"image-section\">\n<figure class=\"thumbnail wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium\" src=\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/celeste-lee-image2.jpeg\" alt=\"image2\" width=\"300\" height=\"200\" \/><figcaption class=\"caption wp-caption-text\">Celeste and Daniel Lee, PhD \/ Photo by Rochelle Moser<\/figcaption><\/figure>\n<\/div>\n<h4>&#8220;The hardest part about any of these illnesses is the isolation and the loneliness. No matter what disease you\u2019re being diagnosed with, I would say that is the largest obstacle.<\/h4>\n<h4>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&#8230; That\u2019s what I would tell my 17-year-old self. I\u2019d say:<i> 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.&#8221;<\/i><\/h4>\n<h4>&#8211; Celeste Lee<\/h4>\n<p><b>Ron Falk:<\/b> Hello, this is Ron Falk for the Department of Medicine at the University of North Carolina. Welcome to the Chair\u2019s Corner.<\/p>\n<p>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 &#8211; 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\u2019s also been a patient with vasculitis and is seen by Dr. Jenny Flythe who is a nephrologist at the UNC Kidney Center.<\/p>\n<p>Joining Celeste today is another interesting human, Dr. Daniel Lee, who is Celeste\u2019s 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\u2019s care. Welcome, Celeste and Daniel.<\/p>\n<p><b>Celeste Lee:<\/b> Thank you so much for having us here.<\/p>\n<p><b>Daniel Lee:<\/b> Thank you.<\/p>\n<p><b>Falk:<\/b> 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 \u201cpatient engagement\u201d mean?<\/p>\n<p><b>Celeste:<\/b> Thank you so much. Nowadays people are throwing around the words patient engagement, patient activation, patient-centered care. There&#8217;s a lot of funding that&#8217;s available for these types of efforts but they get interchanged in a lot of different ways.<\/p>\n<p>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&#8217;s a way that patients can be personally engaged. And that means what is it mean for me as Celeste, a patient with vasculitis&#8211;and I&#8217;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&#8217;s a level of personal engagement in patient engagement.<\/p>\n<p>The next level is what I would call public form of patient engagement. That means someone like me, who&#8217;s worked really hard to be as engaged and activated in my care as I could be, to make sure I truly understand I&#8217;m the expert of my own health. And then how do I take those skills that I&#8217;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&#8217;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&#8217;s almost like advocacy: teaching people how to become better advocates for other patients like themselves.<\/p>\n<p>&#8230;<\/p>\n<p><i> Transcript continues below. See individual tabs to jump to specific topics.<\/i><\/p>\n<div id=\"accordion2\" class=\"accordion\">\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseTwo\" data-toggle=\"collapse\" data-parent=\"#accordion2\"> Advice to patients to become advocates for themselves<\/a><\/div>\n<div id=\"collapseTwo\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> 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?<\/p>\n<p><b>Celeste:<\/b> This is so perfect\u2014just this last week: I\u2019m 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 \u2013 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\u2019t have access to health care. And she said, <i>\u201cCeleste, I know you\u2019ve 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\u2019t know what to do.\u201d<\/i> And she\u2019s very smart. And so we had a conversation and I said, \u201c<i>This is what you need to do<\/i>:<\/p>\n<p><i>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\u2019re suggesting are not necessarily what you\u2019re going to do right now. What you really want to do is you want to learn and treat this as an adventure. You\u2019ll 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\u2019t 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.<\/i><\/p>\n<p>When I was diagnosed, I had a wonderful young physician. He literally was just starting his practice. He said to me, \u201c<i>Celeste, you\u2019re going to have a really long journey in your health care. We\u2019re diagnosing you with Wegener\u2019s (or GPA vasculitis) \u2013 it\u2019s 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\u2019s seat.<\/i> <i>Because you\u2019re the one who\u2019s 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\u2019s really the driver.\u201d<\/i> That\u2019s kind of how I\u2019ve led my life and that\u2019s why I help other people, is to try to get the driver\u2019s mentality.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseThree\" data-toggle=\"collapse\" data-parent=\"#accordion2\">How to help physicians know they are passengers<\/a><\/div>\n<div id=\"collapseThree\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> If you\u2019re the driver, how do you help physicians know that they are passengers?<\/p>\n<p><b>Celeste:<\/b> The way that we help physicians, I talk about partnership. So let\u2019s just say, I just went to clinic with you and you\u2019re doing a second opinion for me from somewhere around the country. What I would say to the physician: You\u2019re the expert of what\u2019s 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\u2019m the expert of myself: I know who Celeste is, I know my experience. What I\u2019d like to be able to do when I first meet with a physician is say <i>I\u2019d 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\u2019s 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\u2019m willing to take for me and you helping me make the right choice.<\/i><\/p>\n<p><b>Falk:<\/b> How do physicians usually respond?<\/p>\n<p><b>Celeste:<\/b> They respond so wonderfully. They\u2019re 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\u2019s office, and instead of saying, <i>\u201cWhat do you think about this?\u201d<\/i> they\u2019ll say <i>\u201cWhy didn\u2019t you tell me about this? You missed this.\u201d<\/i> In kind of a hostile way. That\u2019s 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\u2019ve always had very positive responses from my health care team.<\/p>\n<p><b>Falk:<\/b> How do you get patients to be willing to say all the things that you\u2019ve just said? It\u2019s hard to say those things at opening stance at the beginning of care.<\/p>\n<p><b>Celeste:<\/b> It is, it\u2019s 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\u2019s where the health care provider initiates that relationship saying, <i>\u201cI\u2019m 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.\u201d<\/i><\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseFour\" data-toggle=\"collapse\" data-parent=\"#accordion2\">Advice Celeste would have given her 17-year-old self<\/a><\/div>\n<div id=\"collapseFour\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> 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?<\/p>\n<p><b>Celeste:<\/b> That\u2019s an excellent question, because quite honestly, that\u2019s 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\u2019t 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\u2019s the one who said <i>Celeste, you\u2019re young, you\u2019re smart. Health care is going all these different ways. I highly suggest that you read this book called <span style=\"text-decoration: underline\">Anatomy of an Illness<\/span> by Norman Cousins. <\/i>He\u2019s a wonderful writer. He basically said, and this is what I\u2019d say to her: <i>This is your life. It\u2019s your life to learn and to not give up on, and to treat it as an adventure.<\/i> And help others do what you do, connect with them.<\/p>\n<p>The hardest part about any of these illnesses is the isolation and the loneliness. No matter what disease you\u2019re 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\u2019s what happens when you get disease. That\u2019s what I would tell my 17-year-old self. I\u2019d say:<i> 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.<\/i><\/p>\n<p><b>Falk:<\/b> 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\u2019s 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?<\/p>\n<p><b>Celeste:<\/b> This is what I tell myself in the down times: they are down times. It\u2019s like the ocean: you know the ocean\u2019s going to come in, but you know it\u2019s also going to go out. When you have any chronic illness, there\u2019s going to be times that you\u2019re lonely, you\u2019re depressed, you\u2019re isolated. You let yourself feel bad because you know that the water\u2019s actually going to go back out again and you\u2019re going to feel a little bit better. But I can tell you this: no matter how ill I\u2019ve 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\u2019s a distraction \u2013 you get away from yourself and you\u2019re not navel gazing any longer. You go through these ups and downs in your journey.<\/p>\n<p>This is what\u2019s missing: We don\u2019t give patients opportunity enough, we don\u2019t ask them enough to help. Because when you ask them to help, to talk to another patient, when you ask them to say, <i>\u201cWe\u2019re going to be changing the way we\u2019re setting up our clinic and we want to make sure that we\u2019re doing it right. Would you mind being on this work group with us?\u201d<\/i> By asking that patient, you are giving them a reason not to be isolated and alone.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseSix\" data-toggle=\"collapse\" data-parent=\"#accordion2\">The ups and downs of being a caregiver<\/a><\/div>\n<div id=\"collapseSix\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Daniel:<\/b> Well, Celeste has always been very independent. You used the word ferocious, that\u2019s the way she is. So I didn\u2019t 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\u2019t 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\u2014even 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.<\/p>\n<p>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\u2019ve hoped that Celeste could\u2026like 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 \u2013 yes, I do, every day.<\/p>\n<p>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\u2019m on, I will learn something. I will be able to grow. So when I\u2019m down, when I\u2019m feeling what I wish was experiencing, I stop and ask myself, <i>am I learning anything? Is this an opportunity for me to learn?<\/i> If the answer is yes, then I say, <i>Okay, this is good<\/i>. 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\u2019m sort of her extender in a way, to help her make a difference, and that\u2019s meaningful.<\/p>\n<p><b>Falk:<\/b> When somebody is on dialysis, the whole family ends up being involved with that process. It\u2019s 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\u2019s somebody else in the room with the physician and the patient so that visit is maximized.<\/p>\n<p><b>Daniel:<\/b> 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\u2019s 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\u2019s sort of my strength. I like to ask questions, and some of the questions are stupid, but when I don\u2019t understand I like asking questions. In a way I allow Celeste to be who she is, to do the best she can do. It\u2019s really pairing up with the patient.<\/p>\n<p><b>Celeste:<\/b> Yes, I also think that Daniel and I are very good partners. It\u2019s 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\u2019s relationship, it can be challenging. As Daniel said, you\u2019ve now changed the dynamic. You\u2019ve entered this level of illness into our relationship. Even though I\u2019ve had this going on a long time, I was able to do it all on my own, I didn\u2019t really need Daniel to be there. But I now need Daniel to be a part of what I do because I\u2019m functionally disabled, which I\u2019ve never been before. That\u2019s 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\u2019s all about being open and honest and having real conversations about how we can support each other in this relationship.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseSeven\" data-toggle=\"collapse\" data-parent=\"#accordion2\">How to educate providers in this engagement approach<\/a><\/div>\n<div id=\"collapseSeven\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> 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?<\/p>\n<p><b>Celeste:<\/b> We just relocated here from Ann Arbor last year and we were there about five years \u2013 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\u2019s 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?<\/p>\n<p>Instead of having a health care system system-centric or provider-centric, where we just kind of plugged the patients in to what we\u2019re 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 \u2013 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\u2019t hanging out outside while the patient\u2019s trying to listen really hard on what you\u2019re 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\u2019re also marrying young doctors-to-be how to actually do this work. It\u2019s 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?<\/p>\n<p>\u201cI don\u2019t have time\u201d \u2013 that\u2019s the biggest barrier. I absolutely understand that. One thing I can tell you, is that if you\u2019ve got 10-15 minutes, it can feel like 30, or you can make it feel like 2. It\u2019s 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.<\/p>\n<p><b>Falk:<\/b> Let\u2019s take a moment and list some of those approaches. You\u2019ve 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\u2019t hear it, and then they emerge as if by magic through an otherwise closed door. It must be infuriating.<\/p>\n<p><b>Celeste:<\/b> You know what it is? It\u2019s the isolation again. It\u2019s almost like, this is about you, and you\u2019ve got all of these brilliant minds coming together to talk about you and you\u2019re not a part of it. The one person who\u2019s missing in that conversation is the patient and the patient\u2019s family.<\/p>\n<p><b>Falk:<\/b> So you\u2019d have rounds right there.<\/p>\n<p><b>Celeste:<\/b> Right there at the bedside.<\/p>\n<p><b>Falk:<\/b> What else would you do?<\/p>\n<p><b>Celeste:<\/b> With those rounds, I\u2019d 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 \u2013 a lot of things happen. One is you\u2019ve got the family and the patient there. So as the team is talking about what they\u2019re going to do that day, they may be able to chime in and say, \u201cYou know, I did that yesterday already\u201d \u2013 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, <i>\u201cWhat\u2019s happening today? When am I going to get to go home? Nobody\u2019s told me. I don\u2019t know what\u2019s happening.\u201d<\/i> But by listening and being a part of this conversation, they actually understand what\u2019s happening today. They\u2019re part of the plan, they hear it and know it. And I think that\u2019s really important. You\u2019re 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<\/p>\n<p>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 \u201chand off\u201d the patients, but to me it\u2019s \u201chand over\u201d a patient because when you hand something off, you\u2019re shaking your hands and you\u2019re done. When you hand over, it means I\u2019m entrusting you with the care of my patient. I\u2019m 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\u2019t 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\u2019s another way of engaging the patient in the inpatient setting.<\/p>\n<p>In the outpatient setting: I\u2019m 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\u2019ve brought on, patients with type 1 diabetes who are really engaged, they understand about advocacy, we\u2019ve trained them in peer mentoring and they come on to our clinic and they have a card. It\u2019s 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.<\/p>\n<p>So when you have a new patient who is being diagnosed with type 1 diabetes, a peer can knock on their door and say <i>\u201cHey, my name is Celeste, I\u2019m also a type 1 diabetic, I\u2019ve been one for five years now. Here\u2019s my card. It\u2019s got my email, my phone number \u2013 please feel free to reach out and call me after you\u2019ve gotten your diagnosis and talked with your doctor. I\u2019d love to help you at the beginning of your journey because I know it can be really hard.<\/i>\u201d What does that do? It helps fill the time as the patient\u2019s waiting in the room, talking to someone that\u2019s meaningful for them. It also helps them feel they\u2019ve got the same \u201cfist pump,\u201d same handshake. That way when they\u2019re 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.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseTen\" data-toggle=\"collapse\" data-parent=\"#accordion2\">How to convince patients to want to be peer advisors<\/a><\/div>\n<div id=\"collapseTen\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> 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?<\/p>\n<p><b>Celeste: You know what it is? You ask them. Nobody asks them. If we ask them, they\u2019re 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\u2019re noncompliant for a reason. If they get matched up with a peer program, that person\u2019s going to start to learn how to be a peer.<\/b><\/p>\n<p>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.<\/p>\n<p>Let\u2019s say we have somebody who\u2019s identified: we just ask. And say would you be interested in doing this? They say \u201cYeah, tell me a little more about it.\u201d So they share what it\u2019s like to be able to help somebody else, you talk about the isolation and loneliness, the tools and techniques you\u2019ve 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?<\/p>\n<p>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\u2019re a physician and you\u2019re 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 \u2013 without setting expectation, without training them and teaching them about the language. It\u2019s 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.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseEleven\" data-toggle=\"collapse\" data-parent=\"#accordion2\">How to design a health system that includes patient engagement<\/a><\/div>\n<div id=\"collapseEleven\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> Daniel, you\u2019re 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?<\/p>\n<p><b>Daniel:<\/b> Yes, I\u2019m 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.<\/p>\n<p><b>Falk:<\/b> Yes, I don\u2019t think we do a good job with our residents in the Department of Medicine, teaching them these skills either. I think it\u2019s a whole part of the educational process that has escaped enough attention as it needs. You\u2019re right Celeste, I\u2019ve used the word patient-focused or patient-centered a lot, but it\u2019s not clear to me that we\u2019re really achieving that. Everybody worries about patient satisfaction, but it\u2019s not clear to me that patient satisfaction scores actually equate to what you\u2019ve just described. How do we change our environment?<\/p>\n<p><b>Celeste:<\/b> You\u2019re absolutely correct \u2013 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\u2019s 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 \u2013 they\u2019re trying to figure out the tools to evaluate how these things work. But what I tell people is that\u2019s not what we\u2019re doing. When you\u2019re talking about customer service, patient satisfaction, especially with value-based purchasing, it\u2019s incentives. For me, it\u2019s what\u2019s the carrot to get people to do this work? Right now it is value-based incentives. You\u2019re doing things to the patient, and you\u2019re doing things for the patient. That\u2019s how we set up our practice. You\u2019re talking about, how\u2019s 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.<\/p>\n<p>What I\u2019m talking about is something completely different. I\u2019m talking about what can we do <i>with<\/i> the patient, and the caregiver, to not only improve outcomes, but to truly make the health care experience and what it is that we\u2019re 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\u2019s a very systematic way of doing it. It\u2019s bringing on a whole group of people and training them to be your team members.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<div class=\"accordion-group\">\n<div class=\"accordion-heading\"><a class=\"accordion-toggle\" href=\"#collapseTwelve\" data-toggle=\"collapse\" data-parent=\"#accordion2\">How Celeste&#8217;s work has helped her in life<\/a><\/div>\n<div id=\"collapseTwelve\" class=\"accordion-body collapse\">\n<div class=\"accordion-inner\">\n<p><b>Falk:<\/b> Celeste, how has your work helped you as a patient, and as a person?<\/p>\n<p><b>Celeste:<\/b> It\u2019s given me an absolute meaning and value to my life. I don\u2019t know what my life would have been like &#8211; this happened to me when was 17. But it gave me a purpose, it\u2019s given me meaning, and I have to tell you it\u2019s given me such glorious benefit of living.<\/p>\n<p>I feel like I have met incredible people in my journey, and I feel like we\u2019ve 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.<\/p>\n<p>I was handed a gift at 17 to say, yes there\u2019s going to be some suffering. Yes, there\u2019s going to be some struggles, but we\u2019re going to give you a direction, we\u2019re going to give you a map, and you\u2019re going to go for it and you\u2019re going to have an incredible life.<\/p>\n<p>For me, it\u2019s meant a real meaningful life. I\u2019m 51, I don\u2019t know how much longer I have because I have a lot of complications going on. I don\u2019t say that in a dramatic type of way, it\u2019s 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\u2014I just don\u2019t know when I\u2019m going to slow down and it\u2019s going to speed up. That\u2019s the only difference is I see it and I know its existence.<\/p>\n<p>I\u2019ve been so fortunate to have had the opportunity and the career that I\u2019ve had to intertwine my personal and my professional.<\/p>\n<p><b>Falk:<\/b> What an inspirational thought. Celeste and Daniel, thank you so much for spending time with me today.<\/p>\n<p><b>Daniel:<\/b> Thank you.<\/p>\n<p><b>Celeste:<\/b> 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.<\/p>\n<p><b>Falk:<\/b> Solved.<\/p>\n<\/div>\n<\/div>\n<\/div>\n<\/div>\n<p class=\"MsoNormal\"><span style=\"line-height: 1.43em\">*<\/span><\/p>\n<div class=\"alert alert-blue width:100% \">\n<p><strong>Visit these sites for information referenced in the podcast conversation.<\/strong><\/p>\n<ul>\n<li><a class=\"external-link\" title=\"\" href=\"https:\/\/www.asn-online.org\/khi\" target=\"_blank\" rel=\"noopener\">Kidney Health Inititiative<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"https:\/\/www.asn-online.org\" target=\"_blank\" rel=\"noopener\">American Society of Nephrology<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/www.pcori.org\" target=\"_blank\" rel=\"noopener\">Patient-Centered Outcomes Research Institute (PCORI)<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/sph.unc.edu\" target=\"_blank\" rel=\"noopener\">Gillings School of Global Public Health<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/www.uofmhealth.org\" target=\"_blank\" rel=\"noopener\">University of Michigan Health System<\/a><\/li>\n<\/ul>\n<\/div>\n<p> var audio; var playlist; var tracks; var current; init(); function init(){ current = 0; audio = $(&#8216;audio&#8217;); playlist = $(&#8216;#playlist&#8217;); tracks = playlist.find(&#8216;li a&#8217;); len = tracks.length &#8211; 1; audio[0].volume = .50; playlist.find(&#8216;a&#8217;).click(function(e){ e.preventDefault(); link = $(this); current = link.parent().index(); run(link, audio[0]); }); audio[0].addEventListener(&#8216;ended&#8217;,function(e){ current++; if(current == len){ current = 0; link = playlist.find(&#8216;a&#8217;)[0]; }else{ link = playlist.find(&#8216;a&#8217;)[current]; } \/* run($(link),audio[0]); stops from going to next track *\/ }); } function run(link, player){ player.src = link.attr(&#8216;href&#8217;); par = link.parent(); par.addClass(&#8216;active&#8217;).siblings().removeClass(&#8216;active&#8217;); audio[0].load(); audio[0].play(); } <\/p>\n","protected":false},"excerpt":{"rendered":"<p><!-- description --> <\/p>\n<p class='lead'>Dr. Falk interviews Celeste Lee in this special episode on patient engagement. Celeste is described by Dr. Falk as an &#8220;astonishing leader and ferocious advocate for patient engagement,&#8221; 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&#8217;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.<\/p>\n","protected":false},"featured_media":0,"menu_order":0,"template":"","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","_links_to":"","_links_to_target":""},"podcast-category":[664,639],"class_list":["post-18091","episode","type-episode","status-publish","hentry","podcast-category-podcast-patient-stories","podcast-category-podcast","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Celeste Lee on the Power of Patient Engagement | Department of Medicine<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Celeste Lee on the Power of Patient Engagement | Department of Medicine\" \/>\n<meta property=\"og:description\" content=\"Dr. Falk interviews Celeste Lee in this special episode on patient engagement. Celeste is described by Dr. Falk as an &quot;astonishing leader and ferocious advocate for patient engagement,&quot; 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&#039;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.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/\" \/>\n<meta property=\"og:site_name\" content=\"Department of Medicine\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/UNCDeptMedicine\" \/>\n<meta property=\"article:modified_time\" content=\"2023-08-04T17:53:38+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/celeste-lee-image2.jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:site\" content=\"@uncdeptmedicine\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"32 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/\",\"url\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/\",\"name\":\"Celeste Lee on the Power of Patient Engagement | Department of Medicine\",\"isPartOf\":{\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/celeste-lee-image2.jpeg\",\"datePublished\":\"2019-01-10T19:38:20+00:00\",\"dateModified\":\"2023-08-04T17:53:38+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"en-US\",\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/#primaryimage\",\"url\":\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/celeste-lee-image2.jpeg\",\"contentUrl\":\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/celeste-lee-image2.jpeg\",\"width\":2005,\"height\":1504,\"caption\":\"Celeste and Daniel Lee, PhD \/ Photo by Rochelle Moser\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.med.unc.edu\/medicine\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Podcasts\",\"item\":\"https:\/\/www.med.unc.edu\/medicine\/news\/\/news\/chairs-corner\/podcast\/\"},{\"@type\":\"ListItem\",\"position\":3,\"name\":\"Celeste Lee on the Power of Patient Engagement\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.med.unc.edu\/medicine\/#website\",\"url\":\"https:\/\/www.med.unc.edu\/medicine\/\",\"name\":\"Department of Medicine\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.med.unc.edu\/medicine\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"Celeste Lee on the Power of Patient Engagement | Department of Medicine","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/celeste-lee\/","og_locale":"en_US","og_type":"article","og_title":"Celeste Lee on the Power of Patient Engagement | Department of Medicine","og_description":"Dr. Falk interviews Celeste Lee in this special episode on patient engagement. 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