 Good morning, everybody. This is Donna Prosser, Chief Clinical Officer at the Patient Safety Movement Foundation, and welcome to our webinar today. We're gonna talk about patient advocacy, what it is, why it's important, and how it can help clinicians to provide better care. We are very excited to be able to offer CE credit for nurses, pharmacists, and physicians for this through our accrediting body MedStar Health. I apologize, we are not yet able to provide CE credit for patient advocates because MedStar Health doesn't, it doesn't provide that level just yet. So the CE is only available for those who attend this live webinar today, but as always, this will be available for viewing on our website after the event. And as you can see here, none of the speakers or the planning committee has any relevant financial relationships to report. So we're gonna go ahead and before, actually before we get started this morning, we were gonna try out a little bit, a little bit of a new function on Zoom. And so Kaylee is going to put up here a question for everybody, a little poll for everybody to answer. We just are interested in who may be on in our audience today. So Kaylee, if you could put that up there and everybody just answer if you would, what your role is so that we can kind of get an idea of our audience. Excellent, wonderful. A lot of nurses in the audience today, this is great. Great, okay. And so while we, while folks are answering that question, I'd like to go ahead and get started in introducing our panel. So we are so excited to be joined today by Dr. Daria Terral, who's an orthopedic surgeon, Vanda Bates, who is the CEO of Tentstop, Marilyn Whitley, who is a professional patient advocate. We are also hoping that Dr. Hanje Jung will be joining us very shortly here. So, but while we're waiting for Hanje, I'd like for the panelists to tell us a bit about yourself. So let's start with Daria. Dr. Terral, please tell us about yourself. Good morning, everyone. My name, as Donna said, is Daria Terral. I'm an orthopedic surgeon. I practice in a community hospital in Chicago. My hospital's considered a safety net hospital, which means that we take care of a large portion of Medicaid and underinsured patients. So a lot of times my focus tends to kind of go in that direction. And so a lot of what I'll be talking today is largely from the viewpoint of those who have more challenges in navigating our healthcare system. Thank you, and welcome back. We've always loved having you on our webinar. Thank you so much. Vanda, I think you're muted, Vanda. There you go. Sorry about that. Good morning, everyone. And thank you for having me, Donna, and the team. I am CEO of Tentstop, and that's an organization that I inherited after my husband's death in 2012 from a preventable hospital-associated venous thromboembolism, which is blood clots in the lungs. And I have since been an advocate for myself as a patient for others who are patients and clinicians and healthcare workers who go to the front lines every day to help patients. Welcome, Vanda. Sorry, I'm also having trouble with my mute button this morning, so. No problem. All right, Marilyn, Marilyn, welcome. Thank you, good morning, everybody. My name is Marilyn Whitley, and I am the CEO of Whitley Patient Advocates. And as Donna said, I'm a professional independent patient advocate. However, I've been a nurse for over 25 years, been in the healthcare system, and I have worked closely in leadership roles and health executive roles with patient safety, quality of care. So this is my love, my passion, and we're here to talk about the patient advocacy, which is what we do on the independent basis every day. Excellent, excellent. Welcome, Marilyn. So glad to have you. And it looks like Dr. Hangeh has joined us. I'm told that he is here. Hangeh, are you there? Looks like he's on mute. Hangeh, are you there? Can you hear me? We can, yes, yes. Thank you so much. Yeah, can you see me? We cannot see you. Yeah, I am trying to find a way to show myself to you guys. But yeah, stick to this self mode right now. I see. Well, yeah. Just give us a little bit about your background then, and then while we're getting started with the questions, you can, maybe we can figure out your video. Okay, so somebody said good morning and I should say good evening. It's 11 p.m. here in Korea. I'm a physician working in South Korea right now and I used to work at Johns Hopkins in the U.S. for a few years. And then working at WHO as a patient safety scholar in my area is quality and safety definitely. And these days I'm working closely with the countries in Asia on quality and safety. Yeah, that's it as of now. Well, welcome. Thank you so much for joining the panel this morning. Okay. All right, well, I am going to stop sharing my screen now because we really don't have any slides for everybody today. I'll be sharing the slide deck just so that everybody can get the information about the continuing education credits. But for the rest of the day, the rest of the morning, we're gonna just have a great conversation. I'd like to start first with Vonda. Vonda, can you tell me as a patient and advocate yourself and a family member, what are your thoughts on what a patient advocate is? What's that definition to you? To me, and it's certainly not a book or official definition, but to me, a patient advocate is helping set the agenda for the patient. Our nurses and care providers often have agendas for multiple patients, but when we're a patient, our agenda is our life, our health, our wellbeing. And any advocate that we put in our field is also presumably has one agenda and that's our health and our wellbeing. So that's the simplest version. Sure, I didn't think we could say about, but at a very basic level, that's what a patient advocate is doing. Thanks, Vonda. Marilyn, I wonder if you could tell us, what other kinds of patient advocates are out there? Tell us a little bit about what a professional advocate would do. So we are independent patient advocates. That means that we independently have a practice where when we come in to work with a patient or a family, or even an institution, it just depends, we are working on behalf of that individual person with no influence from any other area. And then there are other advocates that are out there that work for institutions, like there may be some that work for health insurance companies. Some of them have patient advocates that will be assigned to your case and can work with you if you have some complicated medical bills and stuff. And then there are some hospitals that do a really good job. And they have their systems, their health systems. They have individual patient advocates that you can access that if you're there and you have some, again, complex issues or need, they will assign you a patient advocate. The only difference in the big picture is that these individuals work ultimately for the company itself, whether it be a health system or an insurance agent, like an agency or a company. However, myself and our company, just like Vanda said, we are independent, so we work wholly and solely for the patient or the family, and that's what we do. Excellent. And so then, you mentioned that hospitals very often have patient advocates that work for that organization. How do they differ from a professional patient advocate or, as Vanda mentioned, a family member who might be your patient advocate? Ultimately, they are there to help you go through your current situation, your problems, your issue, whatever it would be, if it's helping you plan or organize maybe some of your care. However, when it comes to the end of the day, they can only go so far because there are organizational policies or a job description that holds them within a realm as opposed to an independent, which would be like myself or Vanda, where there's no barriers for us. We can go as far as we need to go and we can ask the questions or push in whatever direction that we feel the patient and the family need or want us to go. So there's no barriers for us. Great. Vanda, I know that- Oh, go ahead. Sorry. Yeah, no, no, please. Go ahead. Well, I was just going to add that, as Marilyn spoke to, often that patient member's family or loved one or the patient advocating for themselves, they know them better than the professionals around them. So they know them, they know their history, they know what normal looks like, they know what deterioration looks like, which is more of a clinical term, but it's a term that I think everyday average householders need to understand and learn because if you know what deterioration looks like and conversely, what improvement looks like, you can be a part of that care team. And so it's not so much about, I think the way I put it, it sounded like if I wasn't only for the patient, then that's the only, that's the 10 scale of one of 10. Those advocates, those care advocates who are working for other companies, for a hospital, for example, are certainly doing their best to have your interest in mind, but they simply don't have all of the information that a person has for themselves or a loved one has for them. That's a great point, thanks Fonda. And now I know that you are very active on patient and family advisory councils. What's the difference between a patient and family advisor and a patient advocate? Are you asking that question of me? Yes, ma'am. Would you repeat the question? And I wanna be clear, I actually don't sit on an actual PAC, although I sit on several committees, statewide committees, organizational committees and things of that nature. So repeat the question and I'll be sure to answer it. Yeah, a lot of organizations have patient and family advisory councils like you were mentioning, right? So, and there are folks that sit on those committees for those hospitals. How do they differ from a patient advocate? Got it, thank you. So they're really looking at the design of CARES, the way I think of it. They're way upstream. They're looking at, like, that their actor, they're looking for it. If there's new technology in the system, that it has a patient lens before it actually gets into the hospital and is used on patients. Those, that upstream, and important, ask questions that the clinicians and healthcare workers haven't thought of yet. And that's why they bring me to the table. That's why they want the patient there because we think about things differently. And as Marilyn will probably point to, even if it's a paid professional advocate, that is a perspective that you're not necessarily going to get from the paid professional staff that's in that hospital or that clinic or at that statewide level who are influencing very strongly how that care goes for a patient. Thank you. And Bonda, you were freezing up just a couple of times during that, but I think we got the gist of what you were saying. So, thank you very much. And so, Marilyn, if patients and families are interested in advocating for themselves, what does that look like? Well, I think there's different levels in advocating for themselves, Donna. We talk about there's lots of barriers that potentially will bring a person to needing an advocate or advocating for themselves. And it just depends on what type of barrier they approach. But again, I think it's situation specific. There's a lot of times when individuals can advocate for themselves and continue to advocate for themselves when the barriers are not too heavy or they're not too strong and they can keep going and they learn as much as they can about their current diagnosis or situation and they can ask questions and get answers and take notes and you can continue to advocate for yourself. I think when people want to pull in an advocate or get an individual, a care partner, whoever it is, their family to help them advocate for themselves is when they start to feel overwhelmed or when those barriers get too strong and they struggle trying to figure out, I always ask, what do I do next? Like that question seems to be the pivot or the elbow or whatever you wanna say. A lot of times when people start asking that question, what do I do next? I don't know what to do next. Then you know that they are struggling advocating for themselves. But for the most part, I think people can advocate for themselves somewhat. It's just when things get complex is when it gets very difficult. Excellent. We do have another poll question that Kayleigh is gonna put up there but while Kayleigh is putting that poll question up there, I'd like to move into talking more about the clinicians. So Dariah, I'd like to ask you, how do you advocate for your patients? So I think on a very basic level, physician advocacy really means how do you make sure that your patient gets the best care? So on a very basic level, making sure we're recommending that patients get appropriate screening, appropriate testing and the appropriate treatments, which in my belief are data-driven. And I think the majority of the medical community advocates for us facing our treatments based on what the literature has told us. So once we know a specific treatment might be the best for this particular patient in this particular instance, we wanna make sure our patients are getting that treatment. I think one of the other very basic ways of looking at it is making sure that we're referring patients to specialists. As a clinician, we have to understand sometimes what our limitations are and if it's something that we think is beyond what we're able to take care of, admitting that and then making sure we're getting our patients to the next level. Patient safety is also something that I think that comes under the realm of clinicians and making sure that we do our best at every level to make sure patients are getting the safest possible care. But then I think as physicians, there's a very granular level for patient advocacy as well. And that is that advocacy really means addressing root causes of some of the problems and some of the disparities. So for example, on the south side of Chicago, we've noticed that over the last, I would say about 20 years, we've had a number of hospitals closing. And this is also a geographic area that sees disproportionate health outcomes. So if you have less people taking care of patients who are already disadvantaged in terms of their health outcomes, then that poses a real problem. So there are a number of providers and systems that have come together to try to advocate on a state and local levels to try to improve access to care. Marilyn touched a little bit about how the scope of practices changes what advocacy means. So if you're in private practice, I can choose to advocate for patients who maybe don't have insurance or can't pay as much. And I can make that choice about who I see in my practice as opposed to if I work in a larger group or healthcare system, I may have to take something to a committee or the hospital has to vote on how we change things and maybe becoming a part of a committee that makes those decisions. Also looking at what our landscape is and do we need to change how we allocate resources? If I see a lot of patients coming in in later stages of breast cancer, then maybe I need to be the one to say, hey, in our community, we probably need to address more efforts towards screening so that we catch women a little earlier and we're not seeing patients coming in so late. And also I think trying to help direct patients to community resources that can help them with some of the social determinants of health, referring them to agencies that may help them with food insecurities or transportation, even employment at times, because all those things play into your overall health. And I think the last part, or actually maybe I shouldn't say last part, physicians are also involved in larger organizations, the American Medical Association, NMA, and then those organizations take positions that help. And as physicians, I think we also have to have a role in teaching the medical students and teaching those that are in training the importance of advocacy, because sometimes our medical system doesn't teach the importance of those things. That's a very great point. Yes, thank you. As many of you may have seen the poll, we asked how comfortable patients are in advocating for their loved ones in a healthcare organization. Most people said they were comfortable or very comfortable with this, which doesn't surprise me because our network has a lot of healthcare professionals and patient advocates. I don't know that we can say the same for the general public. I often hear folks tell me that they're not very comfortable in advocating for themselves and they don't know really what to do. So Hange, I wonder if you could weigh in on how do we empower patients to advocate for themselves or their family members? Well, first of all, my answer would be based mainly on the current MSP of Asian region. So please understand that. So I will give some international perspectives. And the following is my personal experience. So unlike you guys, so in my country, the answer would be non-war, not at all. Okay, for the poll. Interesting. Yeah. And when I first began to try to empower patients to advocate for themselves, I found that they were not aware of what they need to demand. In such a situation, advocacy could not exist. We all know that. So the strategy that I took was to write a very patient-friendly, easy-to-read book called Hospital User's Manual, which became a national bestseller. In the book, I described the counter error measures such as checking patient ID. So here's the tricky part. From my experience, I knew healthcare professionals at End List in Korea best keep the rules such as washing their hands before seeing patients. When healthcare professionals believe patients know the rules that the care professionals need to do. So by providing information to patients, not the professionals, the compliance of safety rules by healthcare professionals increased a lot and patients became more vocal, recognizing that they had the rights to advocate themselves. So in some, although I did not use the terminology advocacy in my country, actually I brought the concept of advocacy to the Korean healthcare environment by providing information to patients. That's how I empowered Korean patients. And so your book then is Hospital User's Manual. And we will definitely put a link to that in our description of this video. So thank you so much. And so then- Oh, thank you. And so, Hange, I'm curious, in Korea, do you have professional patient advocates? Nope. Definitely not. Interesting. Is that an area- In the next question. No, no, no, no, actually there's no such area like patient advocate. Probably in the next question, I'm gonna answer for that question. Yes. Well, let's go ahead then. When do you think, when should patients seek professional help then? Well, it's simple. It's simple, I think. Complex and expensive are the two key words, I think. First, I believe the advocacy in the US came into being because the US healthcare became too complicated. So naturally, a patient needed and sought help to navigate through such complex healthcare. And this is how I understand the genesis of patient advocacy in the early days. Second, from post-effectiveness perspective, if healthcare service is too expensive so that getting help from patient advocate can lessen the economic burden of patients, it's logical to seek for professional help. The reason why I mentioned such patient advocacy 101 is that here I see the future needs of patient advocacy in nations other than the US including Asian countries like Korea. Healthcare in most countries is getting more complex and expensive. Medical tourism breaks the borders among countries adding more complexity. Such changes in the healthcare environment to ignite and accelerate patient advocacy in many countries in Korea. And I believe most countries need to adopt the concept of patient advocacy soon. That's my answer. Well, that's very good, thank you. Marilyn, I wonder if you could address that for countries that do have professional patient advocates like the United States. At what point should patients seek professional help from a professional advocate? Well, from a professional, I mean, I can attest to the two things that he just said are exactly the most popular ones that we get referrals for. As an independent patient advocate are because of the complexity of care and then the expense either wondering where the money is gonna come from or what is the expense going to look like. And then the other barrier I think that we frequently see is communication. Patients and families get very overwhelmed and very confused because they don't understand what's happening. And that's a popular one and it's probably one of the most easiest ones to fix as an independent patient advocate because a lot of times it's just the medical jargon, you know, the medical terminology, the words understand the education piece. So those we can step in and help patients and families understand what that's actually happening to them and then where they can go or resources they can get to and that kind of thing. And then there's two other barriers that we see a lot of that patients come to us and families for help is if they have other personal things going on, excuse me, in their life and being able to take care of a loved one along with some of the other personal issues which may be an illness of themselves or having a large family or distance like the children of elderly not living close to their parents and then they want an advocate to bridge and then the actual stress of the illness. You can have some very well-educated individuals but once they hear that cancer diagnosis they're so overwhelmed that they just don't know what to do next or and they just need an advocate with them to help them get, you know, set up on their path, their journey, support them, educate them and help them figure out which way they wanna go. And then that is as they progress then they become more comfortable typically and can take over their care themselves. So that's as a professional advocate that's a lot of what we see which I'm sure that is the same from working in the hospital and I'm sure everybody else in the panel those are typically the barriers that everyone sees. You know, I worked in Canada for a while and grew up in Canada and we sell the same things. You know, those that the systems are very similar when it comes to complexities and barriers and the fragmentations in our medical systems that cause individuals to seek professional independent patient advocates. Absolutely. Daria, you know, I wonder if you could share your perspective as a clinician when patients advocate for themselves or have personal or professional patient advocates how does it help physicians? I think, you know, at the heart of medicine as a physician, you want your patient to do well. I mean, that's why most people go into healthcare. You want to see people get better. And so anything that will help foster that and bring effective treatment and effective communication is to our advantage and that's what we want. And I think patient advocacy is one of the best ways to do that. I think at the heart of that is empowering the patients as we talked about and a big part of that is education at a very basic level we have to make sure patients understand what their diagnosis is, what treatment we're recommending and why that treatment is the best for that patient. And to some extent we do some of that explanation and as Marilyn said, it can be kind of fostered by family members or other patient advocates within the healthcare system. But at the end of the day when you make that effort as a physician it shows your patient that you care and it shows them that you're trying to have them be a part of an effective relationship. And that's what's really needed to make the healthcare system work. If I trust my clinician, I'm more likely to be, I don't like the word compliant because sometimes that's sort of subjective but I think it fosters more collaboration. I like that better. I think collaboration is a bit more positive. So if there's a real relationship if I feel like this person is recommending this because they really understand me, they understand what's going on I'm more likely to be compliant. Conversely, if I trust the clinician I'm also more likely to be honest. So if I'm having blood pressure issues and I've been prescribed a medication but I'm not really taking the medication and I come back to the doctor and my blood pressure sky high the doctor's gonna say, oh well that one didn't work. Let me prescribe another one or let me prescribe two or three more. But if I say, hey doc you know I gotta be honest with you. I wasn't really taking the medicine then that helps me be a better clinician. So I think the communication and forming the relationship is essential. And then as physicians I think there's another side of what patient advocacy really means. So if we know that there are certain conditions or certain situations either that are prevalent in the community or within medicine in general and sometimes those conditions are not known to the general public. I think it is our duty as physicians and that's how we advocate for our patients in making sure that there are programs, there are protocols, there are things directed to that. Let me give you an example. We do a lot in our hospital around dental health and it took talking to the community to find out there was a staggering number of children who don't even have a toothbrush in the home. So once we know things like that then it helps say, okay, we're gonna have a campaign about dental health or like the National Medical Association has adopted prioritizing preventive medicine as an initiative. The American Academy of Orthopedic Surgeons adopted a policy on distracted driving aimed at teenagers. So sometimes they're subtle education messages that need to be put out. And I think that is another way that physicians advocate for patients. That is a very, very great point there, Daria. And I saw Vanda nodding and saying, yes, yes, yes. We need to, if patients do have that relationship with their physician and they can collaborate, coordinate together then obviously that helps our clinicians to do their job. Vanda, I wonder if you could weigh in on patients. How does that impact patients and families? Thank you. I appreciate that because as I listen, I think the patient advocacy, let's just focus in on the point of care and then the advisors, I'm seeing the chat here and there are sort of two areas and I think it's important to separate them where Dr. Terrell is speaking to is so important because there is this, when we look at general popular health, the only thing we can do is generalize. We can't really get to the very individual needs of that particular patient at that particular time with that particular diagnosis or what have you. And I think the advantage of a patient advocate is to help make that bridge. And I think Marilyn even used that word. It is really important. We have a grandson who from birth has had, his bar is going to be different than his brothers for example. So we have two grandchildren and their bars are very different. If I generalize and try to meet in the middle, both of them are going to have a difficult time with their care. However, if I generalize and I meet each one where they are, then I'm able to actually navigate what good healthcare looks like for each of them, which is a very, very different equation. And so I think it's really important for us when we're at the point of care to really get as much information as we can about what a person's, what they see as good. And I'll just take the example that Dr. Terrell just mentioned about taking medications. If a medication is prescribed and that medication is not taken, there could be another question in there about, well, let's talk about taking medications. Tell me what your experience is of that. And that is the role I think of a patient advocate is to really be right in there with the individual needs, along with what that doctor or that nurse knows in more general terms. That's a very great point. Hange, you wrote in your book about how patients can advocate for themselves on patient safety issues, but what kind of response, I'm curious especially in Korea, what kind of response do you patients receive from clinicians when it's perceived that maybe they're second guessing their care? Oh, I'm sorry, the last part was broken. What did you say? Oh, yeah, yeah. So yeah, how do clinicians typically respond to patients who are advocating for themselves? What kind of responses do the patients receive from those clinicians? Well, probably my answer will surprise you guys. So the thing is that in my country and many Asian countries, clinicians are the most difficult barrier, the most important key barrier that discourages advocacy. So regardless of my book, okay, the thing is that even when patients and their families advocate themselves, their requests are more open than not ignored by clinicians, sad, but true. And I'm living evidence. So, well, I lost my mother to cancer a few weeks ago and kept her bedside always when she was hospitalized and I am a physician, you know. And the doctors in the hospital even knew it, even knew I am a physician. Well, although I asked so frequently, no single clinicians checked my mother's ID, no clinicians washed their hands before they touched my mother. So I ended up stopping asking them. Yes, it was. Well, I want to say it's phenomenal code, learn the helplessness at a population level in Korea and usually clinicians cause the situation. Oh, wow, Han Jae, I'm so sorry for your loss. Thank you. But at any rate, isn't it quite different? The situation is different from US? You know, that's a really great question. Daria, I'd look for you to weigh in on that. Is the situation different here? Do you think that clinicians are more open to patient advocacy here? I think we want to be. And I guess I would have to say honestly, some more so than others. And so what does that really look like? That means you may need to take a little bit more time to explain things. That means you may need to make a phone call to a family member who wasn't present to explain the treatment just so that family member can help the patient be more effective in their treatment. I think a lot of it on our part requires patients and sometimes that's not always the strong suit of physicians. And I say that just not only in dealing with our patients, but also when we're dealing with those that are underinsured as we like to use the terminology sometimes, it requires a tremendous amount of patients to advocate for the treatments you want your patients to have. You may recommend something that then gets denied. And then that is 20 pages of paperwork, 17 phone calls, some more denial, some more paper. But all of that, if you don't do it, doesn't get your patient the best care. So there's that part where you have to have patients despite the obstacles in the system and you have to really be the patient's advocate. Say, this is the treatment that I know is the best for this patient because of their unique set of circumstances and then you have to advocate for that. And then like I said, being open to family members, explaining things maybe a second time. The other thing I think as clinicians sometimes we're a little guilty of is not realizing other outside sources of advocacy. So for example, the church. So there may be somebody who won't come in to have their blood pressure checked. I don't wanna keep harping on blood pressure, but I think that's a common problem that a lot of people have. But let's say I'm already in the church and there's a blood pressure screening in the church or the pastor of my church says, they have this great program down at the hospital down here a couple blocks away and they're doing this screening. I think this is a wonderful opportunity for our congregation. So the messaging may be a little different, but in the end, those kinds of messages sometimes get to the patients. So we have to make sure we're getting that information out to places where our patients will receive it so that we can help meet them where they are and help empower the other advocates that are influential in their lives. Great. I wonder, Daria, as long as we're talking about this, can you talk a little bit about the role of bias in patient advocacy? Okay, so I will start with this. I have learned that or I've come to the realization that I think there is a major flaw in our healthcare system. I know that surprises everyone. That's a shock. Especially when we're dealing with the Medicaid population, there is a sense in our healthcare system you have to fail a treatment, fail, in order to qualify for another treatment. So I want treatment A, but they say, I've got to try treatment D and C and B before they're considered giving you A. When you really need A. So I think that, in a sense, sort of fosters bias within the system to begin with. And I'll just leave that one there. There are, there's a lot of conversation now about implicit and explicit bias in medicine and how our views oftentimes unconscious affect how we deliver care. I think in orthopedics there's been a lot of talk about how if, for example, you have an African-American patient who's been suffering from knee pain, does that patient get offered a total knee replacement at the same point in their treatment and care as a non-African-American patient? And the studies and the statistics say, no, that's not the case. And then when you add to that, there is another newer philosophy of cognitive bias that physicians, I guess, are subject to, I should say. So cognitive bias is a result of how we learn as clinician. So you have a set of symptoms, you have an exam, and you say, okay, if I have this plus this, it equals this diagnosis. And that's how we're trained. And there's also this, okay, I've got to put this information in, quickly come up with a diagnosis, bam, that's it. But the problem with that cognitive bias is if I only think of, you know, this is what it is, because that's what the equation said. And I'm thinking quickly, I got to keep this moving, I got some other patients to see, but maybe that really isn't what's wrong with the patient. And in my haste to keep on time, in my haste because I've been taught I've got to think quickly, I'm not listening to the patient. I missed that key element that they mentioned about their symptomatology. I've missed what the family member who came with them said about what they're like ordinarily. And so I've already skipped to this diagnosis. I've missed some key points that would have helped me come up with a real diagnosis. And now there's a delay in treatment. There is, you know, excess or added burden to the patient. So there is bias in terms of how we perceive conditions, you know, there's been literature about the how women, for example, present with a heart attack versus men. And if I just, oh, you know, she's just a little whiny, it's fine, she pulls something, it'll go away. Then I'm not recommending the test that that patient really needs. And so unfortunately at its worst, bias, you know, negatively impacts both the outcome. And then I think this concept of cognitive bias that is sort of inherent in the training of physicians is really something that we probably need to kind of work back a little bit at the level of training and really deal with. Great. Well, I have several of my other questions that I had, the audience also has. So I'm gonna jump, because we've got 15 minutes left, I'm gonna jump to some of these questions. And Vanda, I'd like to ask you, you know, in talking about bias, you know, one of the questions that somebody asked, which is a great question is, you know, how do you advocate for what matters to the patient versus what is wrong with the patient? I wonder if you could address that. I would love to. And I think I can pick up right where Dr. Turrell just mentioned, because physicians and nurses aren't the only ones who enter with bias. I can remember in 13 days, I was by my husband's side, he went in for a brain bleed, he got that fixed, and then we started to have complications. And I remember distinctly my husband telling the physicians why, not what was happening, but why it was happening. Oh, I'm walking, so my calves hurt. Well, his calves hurt because he was developing blood clots, but because he said my calves hurt because I'm walking so much, and it's an environment of gotta get moving on. So the doctors smile and go, well, you just keep on walking. So I think it's really important for us to just own and honor the fact that we all have cognitive bias. And my husband looked much, much healthier than he was in those 13 days. So the signs of deterioration were not as evident, but we knew there was deterioration. And so as I answer your question or the person's question, I think it's really important for us to just try to get down to the data. My husband and our work, we work with not just the data that comes electronically, but just the data of what is happening in order for something to change. You have to be able to acknowledge and recognize what is. And because we're skipping steps and we're not acknowledging what is, it makes it really difficult for us to actually get at the intervention, whether it's a diagnosis or medication or a change of behavior that's actually going to make a difference. And that's when you get to the actual person's experience and having an advocate by their side to be able to make notations of that is really important. And then when you're designing upstream, whereas an advisor, really being able to frame the questions that get to the heart of things rather than the surface of things. Thank you, Vanda. We have so many great questions here. So I'm going to try to get through as many of them as I possibly can. I wonder, you know, Marilyn, I wonder if you could weigh in on some of these questions about patient advocacy. Before professional patient advocates that are working with patients in the hospital, are there any specific requirements, any state regulations, licensure or anything like that that a professional patient advocate must have? So I know independently for us in the state of North Carolina, and we have a group of independent patient advocates that we meet several times a year. When COVID started, we all met and we were deemed as part of the essential working healthcare workers that if we needed to go into the hospital, that we would be able to go into the hospital with patients and families. And most recently, myself going into the hospital or physicians' offices, it always seems to be more based on an individual basis between what that patient or family member want, what they want to have happen, as well as the conversations with the physician practice. So sometimes there's specific cases where it would be, maybe we would go to a physician visit but not go to treatment and then it would be, so we kind of work in that respect. So does that make sense? Yeah, but I'm curious, what do patients who perhaps don't have the funding to hire a professional advocate and maybe don't have family members that are in healthcare that can help? What do they do? So you know that this is the one thing that I'm sure we'd all love to fix and Dr. Terrell and Bonda, all of us would be, wish we could assign individual patient advocates, especially for those people who have the needs. It's really hard to say what one particular path would be. A lot of times it's based on the actual communities that they live in, the areas that they are in, the resources that may be available, even down to their diagnosis. Sometimes be insured under served patients in a certain income range. There are programs and there are agencies like the National Patient Advocate Foundation that will step in and help and provide independent. So, and they will pay for everything, even Dan sometimes to pay for co-pays for medications. So I tell people all the time, if you can find an independent patient advocate and most of us, all of us offer free consultations, we will try and match you with good resources and someone, especially if you do not have the money to be able to take care of that. When patients are in the hospital, I think the biggest thing that we can do as healthcare providers is to try and match them with somebody. Ask them if they have a person or someone that can help them and someone that can be their care partner. And I know that Dr. Trell spoke about churches. We work a fair bit with churches. We always wanna work more with our churches locally just because a lot of times they are the ones that get the phone calls from the most desperate and the most needy individuals. And we are independent and we do get paid independently, but most of us, again, we do pro bono work and we do rates and we work with our communities to be able to make the things happen that need to happen for individuals. Great. Donna, may I just add a brief? Yes, ma'am, please do. I think I could do it in one minute. A couple of things that I think are important here just because, and I'm gonna speak from the non-professional side of patient advocacy, just because we have a loved one in our lives does not necessarily mean that that loved one's going to be an awesome advocate for us. Sometimes they have their own agenda also. So the reason I say that is that if we are gonna get to the heart of something rather than the surface of something, I think when I hear from professional and non-professional patient advocates, one of the key things that they do that anybody can do, whether they have somebody, they have a community or they want that community involved in their care or not is to develop a relationship with those practitioners, with those clinicians because we have to remember those clinicians are trained to be our advocates. Also, it's just that they're trying to do it for all of their patients and it makes it very difficult to do it for just one by one. And so I would just say also empower as a patient, I am going to do the very best to work very closely with those clinicians that I can tell have my best interest at heart who will hear my questions. And if I have choice and that's not always the case, I can say no thank you. When we were in the hospital, there was one incident where I said I do not want that person working with my husband and I had real good reasons for doing so and I said it was hard. I think if there was one thing I would say a patient advocate does is sometimes they say the hard stuff and it's difficult but it is really important. Well, that's a really great point, Vanda and actually something that somebody had asked a question about. And Hanje, I wonder if you could address this from an international perspective, when something like what Vanda was talking about when a patient or a family member stands up and says something like that, how do we say that in a way that is not perceived as being difficult, that is perceived in a more respectful manner? Well, as of now it's really difficult to do the work that way. And unfortunately, at least in my country, I should say it's not working. But I still see some, okay, here's this thing. Maybe the cultural aspect, maybe you don't understand this. Do you know Confucianism? Yes, Confucianism is in culture. Most Asian countries are operating based on Confucianism culture. In that culture, children need to respect and follow their parents instead of raising questions. In the hospital environments, in most cases, physicians play parents' role, exactly parents' role, and patients are treated as their children. The reason why I'm saying this is that we are different breed. So that is the reason, I think, it's hard to teach Asian people or Korean people how to ask questions, how to request something. So that is the reason we need professional patient advocate in this culture. Very interesting. And Vanda, I wonder from your perspective, I know you have had many opportunities where you've had to be that individual. How do you say these things to professionals in a respectful way? It's interesting because I sort of play that line of being, I presume goodwill. I presume that they want to do their best for myself or for the person I'm advocating for. And my language is I'm presuming that. And simultaneously, and I think this is where cultural differences come in very strongly, I'm very direct. I don't mince words. If I am thinking it and I think it's important, I don't hesitate to say it. Sometimes my jaw will quiver, my face will get red, I get nervous, my heart beats. And those are normal things. And I just as a patient advocate, either for myself or for another person, I just have to go through those turbulent waters. But I do it with the loving spirit of we're in this together. There are certain words that I think, I think we should publish a list, maybe Marilyn and some of, there are several people here who this is their field. We should publish a list. Like these are the words that will help that listener receive your advocacy in a way that reminds them that they are also on your behalf. And that we seek, I was just on a diagnosis recently and Helen Haskell used the words co-production. We're in a co-production here. And so let's co-produce this health and well-being. And that takes you needing to get to know me as a patient or the person that I'm advocating for. Hannah, can I just make? Yes, I was just gonna ask you, Daria, thank you. I know we're kind of closing in. I wanted to share a few things. One, one of the major ways we can make sure our patients' concerns are being represented is to encourage them to become parts of the system. So if your hospital has, for example, we have a patient advisory committee. I know some of the federally qualified health centers have boards and so, and there's usually a spot for a patient to be a part of the board. And I think that kind of involvement is very important. And it's a way of getting patients to advocate for themselves, they represent the patient voice in a way that's unique to how clinicians and other people represent. So that was one thing I wanted to bring up. The other is I think the use of community health workers. Marilyn was trying to talk about some of the challenges that come when you can't afford professional advocacy. And I think community health workers do a wonderful job of advocating and the systems that help provide and make them possible. I think really are helpful. And the last thing I think I would be remiss if I didn't add this, I know this is an international talk, but being that I am in the US, one of the big ways that I've been advocating that our patients advocate for themselves is to vote. To the point that our hospital, we did voter registration on the number of different levels and just, I think that's a way of trying to empower our patients. Obviously the decisions that are made on that level impact them directly. And so that's a way of making sure that they understand that's a way that they advocate for themselves by voting. That's a very good point, especially here in the United States. Well, we have one minute left. I wonder if anybody, just last thoughts from you guys on the panel about now that we are in this pandemic where visitation may be limited and folks can't go into the hospital to advocate for their loved ones. Any last thoughts on what patients and families should do at this time? Bonda or Marilyn? The use of technology I would say is really important right now. So send your loved ones into the hospital with something even if they're not cognitively ready to use it at that moment. Hopefully they will be. With a charger, with a charger. With a charger, yes. One thing that's hard to come with a phone. There's no charger and no one can bring a phone. So send them with a and a charger. But also to Dr. Terrell's point, go upstream and advocate for that, those roles to be essential. And state of Minnesota, we've been working at a statewide level to ensure that every patient gets one person as an essential. So there are things that we can do to help change that as well. Marilyn? And I was just gonna say from an individual perspective, when we work with clients and families and there's even more barriers with the out and with the pandemic, we say just write down your questions, be prepared, try and find out the most that you can beforehand if you have that opportunity, because that will be very helpful, especially if you're prepared before you start and you know a bunch of questions that you wanna ask and things that you wanna make sure gets communicated between you and your healthcare provider and your family. I think that's really important right now more so than any time just because of your time is limited. Yeah. All right, well it is two minutes after eight so we are a little bit over time but thank you all so much to our panel. Daria, Vanda, Marilyn and Hamjai, we thank you all for being here today. Lots of questions that we didn't get to so we will be saving this chat and looking to see if there's any information that we can add into our video description when we post it. So be looking for that and everybody we look forward to seeing you in November for our next webinar. We're gonna be talking about pressure ulcers at that time. So a very different topic and how we can prevent and manage those in the hospital. Again, we will be offering CE for nurses, physicians and pharmacists for those who have attended the live webinar today. More information to come but if you have registered in one of those capacities then you will receive an email from MedStar Health asking you for your information so they can provide the CET. So thank you again, everybody and everybody have a wonderful day. Thank you everybody, have a great day. Thank you. Bye bye. Bye. Thank you guys.