Here we go. Welcome, everybody. We're about to get started. Welcome to the first of three sessions about PASC. Before we get started, for this session, we will be using the app to ask questions. To ask a question, open the AAPMNR app and find this session, click on the session, and then click Q&A in the lower right corner. Type your questions and hit submit. We'll be taking questions from our at-home audience as well, those who are joining us by live stream. We do have a busy agenda today, but also tomorrow morning and Saturday morning, so I do hope that if you have an interest in COVID rehabilitation issues, you do join us for those other two sessions. Today's session is the post-acute sequelae of COVID, the realm of physiatry, and this is a presentation by the AAPMNR PASC Collaborative, which you'll hear more about. This is our agenda. Again, we have a busy agenda. I'm not going to read through it for the sake of time, but you will see all these people coming up to speak. I'm going to make a brief introduction to PASC, what is post-acute sequelae of SARS-CoV-2. My name is Jonathan Whiteson. I'm one of the PASC Collaborative members. I'm one of the professors of rehabilitation medicine at Rusk Rehabilitation, and I have no disclosures. This is going to be my outline, and again, you will hear all of this as we go through. In terms of a definition of PASC, the CDC uses the term post-COVID conditions. There are many different terms and terminologies that have been used for the long-term consequences as a sequelae of PASC or post-acute sequelae of COVID, and by definition, and it's a rather nebulous definition, but it has become more focused, but it is felt that it is a wide range of health conditions that persists at least four weeks or more after the acute infection with SARS-CoV-2. It is a spectrum of conditions that does result in functional limitations and certainly affects wellness, well-being, and quality of life. Another perspective is sort of a failure to return to a usual state of health following an acute COVID illness. Can be new or recurrent symptoms or the unmasking of pre-existing conditions. In terms of timeframe, we sort of understand the timeframe of acute COVID in terms of days to weeks, but certainly the acute illness is resolved by four weeks normally. There can be ongoing symptoms or recurrent symptoms that go past this acute phase. The CDC, again, stipulates that four-week timeline. If symptoms are persisting or occur after four weeks, that sort of puts them into the realm of post-COVID conditions or PASC or long COVID. Most people who do get COVID are recovering within those first four to 12 weeks, but the longer the condition lasts for the more likely it is for the condition to become chronic and for patients to start to present to long COVID clinics. In terms of onset patterns, there have been multiple different patterns of onset of COVID or long COVID presented. It can be persistent symptoms that are present during the acute illness and that continue on afterwards. It can be a whole new set of symptoms that come after a period of symptom relief, an asymptomatic period. It can be an evolution of symptoms such as shortness of breath or cognitive issues that have been there since the time of presentation, but that have evolved over time or an exacerbation of pre-existing conditions and medical comorbidities. In terms of what might complicate the presentation of PASC, certainly the presence of pre-morbid comorbidities or pre-COVID comorbidities can impact how somebody may present. Physical deconditioning, when we're sick with a viral illness, when we're sort of guided or advised perhaps not to be so active, deconditioning sets in relatively quickly. Each of us as we go through a COVID infection and certainly with understanding what the news is, there may be some emotional, physical, mental health consequences of the disease itself, but also recognizing that there is a social, environmental, and economic stresses that have come during the time of the pandemic. All this feeds into the presentation that you may see in a patient who's presenting to your clinic with PASC. There have been similarities with other conditions including ME-CFS, POTS, dysautonomia, and mast cell activation syndrome. Again, this condition may occur in people who've had these conditions before or may just mimic these conditions as well. In terms of new or ongoing symptoms, PASC is really a conglomerate of a wide range of different symptoms and findings and not always in relation to the severity of the disease. We've seen people with very severe disease with only mild long-term symptoms and people with very mild or asymptomatic initial COVID with very significant long-term symptoms, no doubt also affecting and impacting multi-organ system. The time course or the ongoing symptoms also fluctuate. We've seen patients with symptoms that fluctuate day-to-day, week-to-week, month-to-month. Sometimes there's resolution of symptoms and then they recur again. So, the course can be highly fluctuant. In terms of ongoing symptoms, there have been literally hundreds of symptoms presented. These are some of the most common. I'll leave you to read through this list at another time, but many, many symptoms have been associated with PASC. In terms of prevalence, how common is this? There's data suggesting anywhere between 5% and 30% and why does this estimate range, should I say? And that's because there's been different methodology in terms of collecting data, different time periods, different settings, different symptom monitoring, etc. But somewhere in this range of 5% to 30%. The U.S. Census Bureau's Household Pulse Survey, which was conducted between June and July of this year, showed just under 20% of U.S. adults who had ever had COVID currently had PASC symptoms. And that was more likely to be in women, individuals who are identified as bisexual or transgender, individuals with disabilities, but not in this data set. It's significantly different amongst racial and ethnic groups. On November 1st, 2021, one day in time, just under 2% of the U.S. adult population were living with PASC. That really did impact their daily activities. In terms of a cause, what's the pathogenesis? The answer is at this moment in the world, we're not quite sure, but certainly a lot of work and research is being done to understand what is causing PASC. Probably many different underlying pathophysiologic processes. Certainly there's data to suggest that the risk of developing PASC is greater in women than in men, greater with a more severe initial COVID-19 infection. Certainly in those with many other comorbidities at the time of presentation or infection, and also socioeconomic status, which obviously hides a lot of health issues behind that one-line title. In terms of the multi-organ system effects of COVID-19, again, we've seen COVID affect many different organ systems. This diffuse presentation may be related to a more generalized systemic inflammatory state, maybe viral activity, a degree of autoimmunity, a degree of inadequate antibody response, and maybe other causes as well, which we're still to elucidate. These are a couple of references that are interesting reading in terms of the potential etiology of PASC, but these two studies really did focus down on a couple of factors, including the presence of diabetes, the severity of COVID viremia, the reactivation of Epstein-Barr virus, and the presence of anti-interferon antibodies. So as we sort of pull back up to a higher level, you know, what may be going on, probably a combination of viral and host factors, including the persistence of viral antigen, a degree of systemic inflammation, potentially microvascular dysregulation, and an autoimmune disorder. Again, this diagram, and I don't need to go through it in any detail, really just summarizes what the potential pathophysiologic mechanisms are of PASC. In terms of prediction of recovery, and I think this is important for all of us as we try to understand who should and who needs services or more intense services, but predictors of poor recovery, this was a study that came out of Scotland, published actually just about a week ago, showing that the risk of poor recovery was more significant in female, non-white slash Caucasian, those with more social issues, social deprivation, those with higher levels of comorbidity, those with heart and lung disorders, depression, those who were not vaccinated when they were infected, and those who had more severe disease and were hospitalized. These are sort of markers of recovery. Many of us have seen this slide before in terms of a timeline of recovery of acute COVID and how that correlates and goes into long COVID. Again, recent studies published, this one shows on September the 3rd in the United Kingdom, about three and a half percent of the population were self-reporting symptoms of long COVID. Sixteen percent of those had had COVID within 12 weeks. Eighty percent at least 12 weeks ago. Interestingly, 46%, nearly 50% of individuals still one year later were reporting symptoms, and a fifth of people who responded two years later still with symptoms. In terms of... This was another study. This study came out of China, also saying at 12 months, close to 50% of individuals were still suffering with symptoms. Women had a more significant risk for long-haul COVID. But interestingly, 88% were back at their pre-infection employment status. How they were doing at work is not detailed, but they were back at work. This, again, is that study from Scotland in terms of the timeline of recovery, and this... I put this slide up really just to identify to you or show you that there are challenges with data. There were over half a million people invited to participate who had tested positive for COVID. Only 16% reported in terms of one questionnaire. So the data is clearly biased to some degree. But again, the study did show that close to 50% of people, or over 50% of people still at 12 months, were suffering. So in summary, PASC is a spectrum of symptomatic disorders lasting at least four weeks after the acute illness, and in fact, impacting function and quality of life. Most people do recover over 12 weeks, but we all know we've seen it, that many have symptoms that are persisting for now two and a half years into this pandemic. It's a very varied presentation. The incidence is up to 30% affecting women, black, those with disabilities, bisexual, transgender, more than other groups. In terms of etiology, unclear, still to be elucidated, a lot of work being done then. Predictions of poor recovery as enlisted, and up to 50% have persistent symptoms at one year, although this data may be slightly biased in terms of self-selected. We have a lot to talk about today, so forgive me if I went through just a little bit quickly. I do thank you for your attention. Dr. Stephen Flanagan is now going to take the podium just in brief. Dr. Flanagan is a professor and chair of rehabilitation medicine at Rusk Rehabilitation. To keep it real brief, he is your incoming president of AAPMNR. Great. Thanks, Dr. Whiteson, for that introduction and for that talk. That was really fantastic. I'm just going to talk you through or walk you through what the American Academy of Physical Medicine has done in response to long COVID. I think we recognized early on in 2020, certainly in the summer after that nasty spring, certainly that we had in New York and other parts of the country, that there were just some folks who were not getting better. Jonathan just went through that really nicely. These folks were presenting with a whole host of problems, really presenting with disability. Of course, if you think of our field, we deal with so many different organ systems, but what we own more than any other specialty is disability. We felt that there was an obligation to ensure that there was a call to action to really address what we felt was going to be, and it turned out to be true, a major public health concern. Shortly after we realized this was going to happen, the academy put out a call to action to the Biden administration and to Congress that called for resources for the clinics that were treating these folks because they were overrun. For those of you who were dealing with COVID and post-COVID, you know how many people in your clinics and how difficult it was to get them all in, and there weren't nearly enough of them. We also wanted to make sure that there was equal access to care. Dr. Weitzman was just talking about who the most vulnerable are. There's a history, as we know, that not everybody in this country gets the care that they deserve, and we knew it was important, so that was part of our call to action. We also called for funds to research this problem. It was novel. We didn't know much about it, and we got that published. I think this was in the Washington Post, but more than that, what the academy did was realize it's just not a call to action that we publish in one journal or one publication or a newspaper. We went to the media, and many of us were called upon by national and local news to talk about COVID, long COVID, and our call to action to the administration, and we were heard. For those of you who are up on policies and what have you, the Biden administration in April of this year published a memorandum on what the government needs to be doing for long COVID. What did he put? What did the administration put in that memorandum? The clinics need to be funded. There needs to be equal access to care. Oh, and by the way, there needs to be research. We were heard. So, this was really an important thing for the country. It was also, by the way, really important for physiatry, because, you know, we have been the best kept secret in medicine, but no more. Long COVID has really elevated the awareness of what we as physiatrists, physiatrists, rehab doctors, whatever you want to call us, bring to medicine and how valuable we are to medicine. So, we were heard. There is now legislation in Congress that's being considered to make sure that there's funding for clinics, particularly for those who are underserved. So, this is really very exciting, but that's not all we did. We worked with our colleagues right here in Baltimore at Johns Hopkins and put together a past dashboard. This dashboard estimates the number of folks who have long COVID or who are susceptible to long COVID based on data that came from JAMA, the 10 to 30% of folks who survive COVID go on to develop long COVID symptoms regardless of the severity. This information is actually broken down county by county across the country providing valuable data to public health experts, to epidemiologists, people who are really studying this. I encourage you to go on to the AAPM and our website, look at this. You can sort of work with some of the numbers there, but it's available for free for everybody. And what you're going to hear about not only in this presentation, but in the presentations to come as well, is what we've also done in the academy, which is to bring together a past collaborative, not just a physiatrist who are working with this, but our colleagues in internal medicine and critical care, population health, our colleagues in psychology and other rehabilitation fields. We recognized that this was a novel condition. We really didn't know a whole lot about it, but man, folks were dealing with this in real time. And folks started saying, well, what are you doing? And what are you doing? And then we realized, wait a second, we need to bring everybody together and bring this collaborative together. And what they did in a relatively short period of time, it's really impressive, is brought together all of those groups, patient advocates to take symptom by symptom what these folks are dealing with with long COVID. Cognitive problems, cardiovascular problems, autonomic dysfunction, you know, what do we do with folks with pediatrics? And using a modified Delphi approach came up with guidance statements that are published in our journal. That's it, PM&R, you're all familiar with it. I think you all get it. Or where these are all published, giving information to healthcare providers who are dealing with folks with long COVID. There are a few more coming out. Neurology, mental health, I think still have to be published eventually. What we also want to do is to publish a compendium. It's a lot of paper, a lot of information to go through. But what we hope to do next year is to put this into something that's a little bit more easily accessible for folks who are treating people with COVID. So much more to come during this and following lectures. Thank you for coming and I'm looking forward to seeing you all later. As our president, incoming president-elect, he has other things to go off to right now. But we do thank you, Steve, for being with us. Kavitha Nirakonda is our next speaker who's an Associate Executive Director of Quality and Research Initiatives at the AAPM&R has really led the Academy's quality advocacy guidance development, clinical data registry, most recently the Academy's long COVID endeavors. Without Kavitha, we would not be united and together. She is amazing. At the end of Kavitha's talk, we're gonna see a video as well from Lisa McCorkle, who is co-founder of the patient-led research collaborative, BodyPolitik, been a very significant part of this collaborative, the patient voice, patient representative. Kavitha, thank you. Thank you. Thank you, Dr. Whiteson. I'm gonna go into a little detail on exactly what the AAPM&R past collaborative has been up to. So the past collaborative was organized to bring structure and function to all of AAPM&R's long COVID efforts. It was a place for clinics, clinicians, their colleagues and patients, and sometimes government officials to come together to have focused, meaningful and ongoing clinical exchange. We now have 40 plus post-COVID clinics, a part of our collaborative from across the country. We have practitioners from multiple medical specialties engaging with us monthly and a lot offline. And we have a lot of healthcare disciplines, I'd say 15 plus healthcare disciplines engaged in the collaborative. We also have patient organization representation and it has been a central part of the collaborative's work, very intentional to ensure that patient voice is being heard and not just heard, but listened to and a part of our writing process as well. And we've also received federal input and collaboration as well. The goal of the past collaborative was to develop clinical guidance for the medical community. What you see on the screen here is their objectives, what the collaborative lives by, breathes by on a daily basis. Their goal was to come up with consensus guidance to help clinics and clinicians on the ground today without much evidence to go by. So it was a true collaborative process where we brought together multiple stakeholders to brainstorm, to talk, to write and to learn from each other. We were led by three co-chairs, multidisciplinary Benjamin Abramoff, who you received here to talk about today. He's our physiatrist collaborator. Eric Herman, also here today. He is our chief primary care and population health officer from Oregon. And we had Jason Maley, who's pulmonary and critical care. He will be presenting at one of our other sessions later this week. So it was through the leadership of multidisciplinary co-chairs that allowed us to get to a place where we are today. The modified Delphi process that the collaborative used to write their consensus statements was a three-wave process. On the screen here, you see the waves one, two and three that were used throughout the process. We started with true brainstorming sessions. We did voting. We had small writing groups come up with information and we went back to the full collaborative for consensus voting as well. And our collaborative has been together since March of 2021. This slide just shows a summary of everything the collaborative has done to date. And it is truly a tremendous amount of work that this group has done over the past 18 months. They grew from 26 clinics to 41 clinics being represented. They've met 18 times for two hours a night, sometimes until 10 o'clock at night Eastern time to talk through their issues. They're going to be publishing eight peer-reviewed publications this year. They've established... They've allowed PM&R and the Academy to establish new relationships with specialties and organizations that we did not have connections with before. And they're truly focused on taking this to the next level. Starting with pieces of consensus statements on specific clinical areas to working towards a compendium statement that pulls it all together in one place and where the collaborative wants to go next. I'm truly inspired by every single person that has engaged with us. And I thank you for your efforts. When I click the screen, you will see Lisa McCorkle, our patient representative and advocate's presentation. Hi everyone. My name is Lisa McCorkle and I am a person living with long COVID and the co-founder of the Patient-Led Research Collaborative. Today, I will be talking with you about who we are, the work that we've done to increase awareness of long COVID and advocate for people with long COVID and provide you with recommendations for how to improve care of your patients with long COVID. So PLRC or Patient-Led Research Collaborative is a group of long COVID patients who came together in April of 2020 after all joining the BodyPolitik COVID-19 support group. And we all have a wide range of professional backgrounds including participatory research, neuroscience, machine learning and public policy. We now have over 45 members across four continents. Before I get too much into our work, I do wanna highlight BodyPolitik where we stemmed out of. BodyPolitik is a patient-led grassroots health justice organization. In April of 2020, Fiona Lowenstein wrote the first patient authored article on long COVID in the New York Times, which included a link to their newly formed support group BodyPolitik. Over 2000 patients signed up overnight from around the world and has been a much needed online system of peer support to patients with long COVID ever since. It's well known that chronic illness peer support provides a sense of community, a sense of normalcy during otherwise seemingly very abnormal life events. It can be lifesaving and it can help empower patients across all areas of life. And we really see this within the BodyPolitik support group. BodyPolitik also hosts events based on member requests and is active in advocacy for people with long COVID. I highly recommend referring any of your patients with long COVID to BodyPolitik support group for both emotional support as well as critical information. So back when we as PLRC were formed and BodyPolitik was just beginning, public discourse on COVID was largely centered around patients with severe or fatal illness. And while this focus was critical, it became clear that a growing number of us were experiencing a wide variety of symptoms that were well beyond what had been expected for a respiratory virus. And for a prolonged period of time, much longer than the two week recovery period we were promised for a mild case. So our research was the first to document this. We conducted an online survey of people who were experiencing prolonged symptoms after COVID and we documented multisystemic symptoms, issues with testing and testing accessibility as well as stigma. We posted this just as a Google doc online, but it got the attention of media, government and researchers and really validated the experiences of people living with long COVID. As our symptoms continued, we realized we need another much more expansive survey. So our second survey documented the prevalence of 203 symptoms in 10 organ systems and traced 66 of those symptoms over seven months. We also measured long COVID's impact on life, work and return to baseline health. And this was published in the Lancet's eClinical Medicine in July of 2021. We've had a big impact on the field of long COVID research and advocacy since then. So in addition to doing our own research, we've consulted on dozens of other long COVID research studies. We've provided input on many public health guidelines and definitions of long COVID. And we've paired our research with advocacy from our research and interacting with our community. We've developed recommendations for the National Research Action Plan, we've testified to Congress and have provided input to long COVID legislation. Some of our key advocacy areas are on the screen. It's a lot. One big one is increasing awareness of long COVID as well as associated conditions and providing medical education on all of these. That includes myalgic encephalomyelitis or MECFS, forms of dysautonomia like POTS postural orthostatic tachycardia syndrome, small fiber neuropathy, mass activation syndrome. We also push for increasing patient involvement throughout the research process, not just limited to long COVID, but really for any illness, because we know and we've seen that people that experience the illness are best able to identify questions to ask, issues to investigate that matter to them, how to best set up a research study that accounts for a patient's experiences and also design effective solutions based on our intimate familiarity with the illness. We have several major projects that are currently underway. So some of them are listed on the screen. One is a $5 million biomedical research fund where all of the awards are gonna be decided by patients. Another is an ongoing publication of patient generated hypotheses that will be designed to give researchers ideas to pursue and further research. Members of our team, as well as body politics team have been invited to attend the monthly AAPMNR past collaborative meeting since very early on. And when we have the capacity, we attend these meetings, we review and provide feedback on the collaborative multidisciplinary clinical guidance. And to these meetings and when giving feedback, we bring the needed insight of the patient experience. So what are patients experiencing when they go to a clinic? What kind of care are they actually receiving and how can we account for that in the guidance? What symptoms are patients impacted by that many providers may ignore or not pay attention to? And based off our own research and knowledge in long COVID and related illnesses, we flag best practices and protocols for assessment and treatment and inform members on research into other infection initiated illnesses. Lastly, I've also been asked to speak on what as patients we feel should be said to a group of physiatrists who are working with patients with long COVID. We could probably have an hour long discussion on this and hopefully someday we will, but for now I'll highlight some key takeaways. It's critical to understand that there is a complex relationship between the structural barriers facing someone with long COVID, the tools available for diagnostics and treatment, the ones that are available now, and the patient's exertion burden. Diagnostic tools are impacted by symptoms. They can also worsen symptoms. Treatments and therapies can improve symptoms, they can also worsen symptoms. And symptoms themselves can make it difficult to access care or be able to effectively communicate the most pressing symptoms in a short appointment time. So when someone's experiencing 15 symptoms that can wax and wane and have differing levels of impact on their life, they're also experiencing cognitive dysfunction. It can be really difficult to effectively communicate what are the most pressing issues when you're seeing a provider for a pretty short amount of time. Additionally, many people with long COVID have been gaslit in our health journeys. We're told we're making up our symptoms or that our symptoms are purely caused by anxiety and are refused further treatment. So important to keep that in mind when caring for your patients. And that brings me to one of our biggest asks and recommendations of providers is to believe patient-reported symptoms. People have a lot of insight into their bodies and we need to be believed for what we're reporting and not be dismissed. Additionally, use objective measuring of symptoms and testing, particularly for post-exertional malaise and POTS-related symptoms. This can be the deciding factor in patients getting access to needed benefits, to accommodations at work. The screeners and tests for these symptoms and illnesses do exist that can document this, so please use them. Relatedly, learn about overlapping illnesses and common comorbidities like ME-CFS, POTS, Mass Activation Syndrome, Small Fiber Neuropathy, and Ehlers-Danlos Syndrome. Both learn what is known to date about these illnesses and treatments that are used for symptom management, as well as how historically patients with these illnesses have been treated so as to not replicate past mistakes. An important part of this is not prescribing graded exercise therapy to people who experience post-exertional malaise. This is contraindicated in ME-CFS and it's critical to instead emphasize the practice of pacing, which has been shown to be one of the most helpful symptom management techniques in long COVID and ME. Develop a care plan in partnership with the patient that accounts for the nature of long COVID. This plan should include regular assessment of the severity of symptoms and understanding that what a patient feels on an appointment date is likely not what they feel every day or all of the day. Also understand that a patient's ability to adhere to a treatment schedule or even communicate what's happening to them can be impacted by long COVID symptoms themselves. Assist in the care-seeking process to the extent possible as well. So as I mentioned, seeking care in and of itself is extremely burdensome on patients, especially those with severe executive dysfunction. If providers and your teams can help manage appointments and tracking of the care plan, taking into account the access burden of traveling and scheduling and how all of that can exacerbate symptoms, that would be hugely helpful to patients. That's my time. Thank you so much for having me and thank you for the work you're doing to improve outcomes for people with long COVID. I look forward to continuing the conversation. Thank you. Thank you. Next we're going to have two speakers. Monica Vidisco Gutierrez is a physiatrist, as many of you know, Professor and Chair of the Department of Rehabilitation Medicine in UT Health San Antonio, Texas, and a member of the collaborative and running COVID clinics. And following Monica will be Talia Fleming, also a physiatrist, Medical Director of Stroke Recovery and Post-COVID Rehabilitation Programs at JFK Johnson Rehabilitation at Hackensack Meridian Health in New Jersey, and also very much involved with the past collaborative and running COVID clinics. Monica followed by Talia. Thank you so much. Thank you so much for being here today to listen to this. We'll be talking more about the healthcare disparities aspect of COVID-19, which is something very important. So I'll talk a little bit about what's out there in the literature and what adverse impacts there are related to these communities, and my disclosure is there as well. So may the odds be ever in your favor, and that's not just for the Hunger Games, but it ends up being for a lot of our patients, where what chance are they going to have in this healthcare system? You already heard from a patient who said, we're gaslit. We're not listened to. We're not getting... You know, physicians are gatekeeping certain tests and certain treatments for patients, and this happens more often than you realize, and this is my very personal story that I can now say without crying, is that is myself and my siblings with my grandfather. My grandfather was a World War II veteran. He had to drop out of school when he was in the 10th grade, or he only went through the 10th grade, went to World War II, you know, served our country, came home, never got any education after that, was in the reserves, 13 kids, of which some of them were able to get educations, but I'm the first person to go into medicine, and before I ever went into medical school, he had a stroke, and so no one knew what to do. This was just like this horrible, devastating thing that happened to him, and I was still in college, so I didn't know anything about a stroke because no one's medical. I was not... I was pre-med, which is the closest sort of thing to being medical, but means nothing at that point, as you know, and the only thing I really remember is that from the hospital, he went to the nursing home, and he stayed in a nursing home for the rest of his life, and oh, he could talk, and he could move both sides of his body and move himself in a wheelchair, so that is actually a really great stroke rehab patient, but he never had rehab, and so it just happens that this happens. Healthcare disparities happens to people, and it sometimes doesn't matter your access-related factors or your clinical needs. Some people don't get the right kind of healthcare that they need, and that includes rehabilitative care, and he had, you know, VA benefits. He had Medicare, but still, he was in a nursing home for the rest of his life, and so this is something that now I've published on because it's become a passion of these patients, and here is, you know, what we said. Here are the healthcare disparities that happens for Hispanic patients when we reviewed the literature in PM&R, and it doesn't happen just in stroke, but in brain injury and spinal cord injury, in total knee replacements, in amputations. I could go on and on, and then we did another paper for, you know, Black patients as well, because guess what? It also happens in that population, too, and so then COVID happened, and what did we see? This was data that was coming out of the CDC. What were the populations? Who was being hospitalized? Who was dying? Who was getting COVID-19, and it was usually from these marginalized, minoritized communities, and we saw it no matter where you were in the United States, and that was at the beginning, and it continues to be the same even to now, and we had, we wrote, we did a lot of writing during this. It's a very passionate time, okay, and so we had said, you know, we were noticing that already there are certain populations, in this case, we were talking about African-American population being disproportionately affected by COVID. We already knew that they don't get appropriate rehab services for stroke, brain injury, spinal cord injury, everything else, so it was our call to action to say, you know, we have to make sure that we're serving these patients, and that was also, you know, part of what we're doing in the past collaborative. I'm from, originally from the Rio Grande Valley. It's on the southmost part of Texas. You know, I'm close to there in San Antonio, relatively close to there, and this was a major article that was in the New York Post saying, you know, so many people were dying there in the border. My sister had five friends whose parents all died, and, you know, in a couple of periods, a couple of months time, my brother works at a hospital that, you know, he was saying, like, we ran out of oxygen, literally, in our hospital, because there were so many patients, and so that was part of the reason why I started my long COVID clinic. It was in south Texas, and I said, we're going to see this in our patient population, and so part of it was to meet a need and to know that we have a patient population that's generally underserved, and so who gets long COVID, and we, you know, you heard a little bit about it, and there's been these papers that have come out, and it's patients who are hospitalized, yes, you know, their other signature things they looked at, certain disease states, diabetes, obesity, asthma, guess who's also more likely to get those types of diseases, and so what does recovery look like, and so some of it is, you know, I say it's the tale of two patients, like the tale of two cities, and this was the story from the beginning, you know, some patients, you know, they got hospitalized, and, you know, they had patients may have gotten really sick, and ARDS, and everything, and, you know, you had patients who were able to go to an LTAC, maybe able to go to inpatient rehab, and get those services, and then you had ones that they just sent home or didn't get anything. The home health didn't come, because home health was not scared to come, or it was so hard to get any services, and this made a huge difference of how patients looked at the end, if they had, you know, rehab services versus if they just got home and got weaker, and so this is something that, you know, we were seeing a lot at the beginning of the pandemic. Of course, now that we're even seeing long COVID in patients who weren't hospitalized, we're seeing it, so this was a study that came out of the University of Colorado Health System, and they had multiple, 12 hospitals within their system, and they looked at all the patients who had been hospitalized for COVID-19, almost, you know, at this point, over 6,000 patients, and they said, okay, if they're hospitalized, who is getting OT and PT services, and they said, okay, about almost 4,000 patients got these services. Who were the patients who did not get physical therapy? It was going to be patients who had Hispanic ethnicity, especially if they spoke Spanish, and it didn't matter the severity of the disease. These were the patient populations that didn't get inpatient, not going to IRF, but, you know, while they were seen in the acute care setting, so one in five Americans. We've heard about that data, so I'll go about it kind of quickly, and so we're saying, okay, but it's patients who are younger rather than older, so 40s, 50s, patients who maybe otherwise would consider to be healthy and usually don't require healthcare services, they sometimes now are requiring it now, and then women more than men, or at least the ones who are, you know, reporting it at this point, and then, yes, it was the Hispanic population happened to have the highest percentages, so this is even more recent data from the National Center for Health Statistics kind of showing the same thing around the age bell curve around 30, 40, 50, female sex more than male. If you look at race and ethnicity, Hispanics going to be higher there. If you look at by education, it's going to be people who have less than a high school diploma, and then by disability status, definitely for people who have disabilities, so again, underserved communities, and same thing with the BA5 variant. Another preprint came out, still about one in five people having symptoms after the fact, and it didn't matter the booster status and kind of the same patient population, so we know health equity is a problem, and COVID pandemic has only made it worse. This came from the past collaborative and what we have put out there, and so there's a lot of places where you can go for more information, so health equity is we have to make sure that these under-invested groups get attention and get access to care so that there is not healthcare disparities. We know it's, yes, you know, other than physical mental abilities, it has to do with biological sex, with justice involved, religion, socioeconomic, there's so many things. It's not just race, maybe that's what I'm talking about, but we know it can belong to any of these groups, and social determinants of health, Dr. Fleming will be talking about that next, but I also consider these to be social determinants of disease because it's these social factors that cause diseases in certain populations. Last little points about mass, so this was an interesting, something came out with the Kaiser Family Foundation recently about who, you know, they asked, like, should you stop wearing masks or continue to wear masks, and by race and ethnicity, the ones that thought that people should continue to wear masks to minimize the spread of COVID-19 were going to be mostly from the Black and Hispanic populations, and these are usually the populations who lost more friends and family due to COVID and were hit more and significantly, and then it was, like, also asking, like, how often were you wearing masks in indoor places? Again, usually from these minoritized groups would be the ones who were wearing masks, so we continue to see it because they were impacted more personally. So, you know, my take-home message is everyone's different. Please listen to them. Let's continue to try to ensure they're getting access to care and offer them some types of treatments. The World Health Organization, a big proponent of healthcare equity, has a living guideline that talks about rehab and about getting rehabilitation care long COVID's a disability under the ADA, so that means they have rights and that they can get time off as needed and, you know, qualify for disability. Give all your patients rehab and even ones who don't need it. Thank you. Or not who don't need it, but you who wouldn't usually get it. Thank you. Thank you everyone in person and everyone online who's joined us for today. As the slides are pulling up, I'd just like to continue our discussion on healthcare disparities in COVID and PASC. I have no disclosures related to this work. And the objectives of this section is really to identify areas of disparity and provide tools to optimize healthcare outcomes. For overview for today, we're going to talk a little bit about the social determinants of health, go a little bit more in depth about the World Health Organization and how they describe the social determinants of health. We'll also take a look at the Healthy People 2030 by the U.S. Department of Human and Health and Services. Also, we're going to take a look at the AAPMNR Health Equity Statement and look at specific guidance for physiatrists, including the health equity tables that were developed for these consensus guidance statements. So first, social determinants of health, it's a word that we kind of threw around. Some of you may or may not be as familiar with what it really comprises. And social determinants of health are conditions in the places where people live, learn, work, and play that affect a whole range of health risks and overall outcomes. Healthy People 2030 uses a place-based framework, which outlines five key areas of social determinants of health. On the upper right-hand corner of the circle, we have healthcare access and quality. As we go down around the circle, they discuss neighborhood and built environments. They also talk about social and community context. They find economic stability also an important component, as well as education access and quality. So the World Health Organization really took a deep dive into health equity. They wanted to say not only on the individual level, but as a global level, how are we going to be able to address these health inequities? Because we're seeing it not only in the United States, but really all around the world. They find that health equity is the absence of unfair, avoidable, and remediable differences in health status among different groups of people. And health equity is achieved when everyone can attain their full potential for health and well-being. They suggest five practical areas, and they describe a big promotional around it around World Health Day. But five actionable steps that you can take to address the root causes of inequities and to implement solutions. So Dr. Verdusco-Gutierrez very well described how this relates on the individual and on the personal and societal level. The World Health Organization says these are specific steps that each country can take to address those problems. Number one is equitable access that's not only including the vaccines, but also tests and treatments within and between countries. Number two, they talk about post-COVID-19 recovery budgets and plans. Dr. Flanagan mentioned earlier today how the United States recognized that that was important, and the goal is for them to designate funds specifically for this. Number three, they address equitable services and infrastructure in all communities, both urban and rural. We know that having the idea is one thing, but implementing it with the correct infrastructure that's sustainable is really a whole other step. They also promote strong primary health care for everyone and everywhere. We know that everyone does not have access to a physiatrist. So part of developing the consensus guidance statements was how do we share the information that we have, this way primary care providers around the country and really around the world can use that information. And they also highlight better data collection and reporting so countries know where the health inequities are so they can address them better. In the United States, the Department of Health and Human Services established Healthy People 2020, and it really sets data-driven national objectives to improve health and well-being over the next decade. So they describe core measures that are objectives, as well as developmental research objectives as well. So not only clinical, but also research objectives. And really taking a look at what they... They took that framework of the social determinants of health and described them a little bit more. So they described the connection between people's access and their understanding of health care services, as well as the connection to education, so the context in which people live, learn, work, and play. We heard that earlier. As well as the connection between financial resources that people have in terms of income, cost of living, and connection where people live in terms of their housing and their neighborhood. So I'm really proud to say that the AAPMNR, they had the foresight to know how important this was, and this group really decided to develop a health equity statement. And what we did is we combined not only the information and the goals and objectives from the World Health Organization, also from Healthy People 2030, but really combined that with the principles of inclusion and engagement, which were already established by the AAPMNR. So this health equity statement, I'm not going to read it here, but it's actually included in every single one of our consensus guidance statements. That's how important the Academy felt that this was. And so this addresses not only the timely patient access to multidisciplinary care, but also specifically addresses how we can really call out those inequities and see how we can combat and strengthen our safety health care net, especially for patients with disabilities. So over here on the right-hand side of the screen, these are some of the areas that were specifically called out within each health equity statement and within each consensus guidance statement. So we took a look at areas including biological sex, gender identity, disability, race and ethnicity. Are there any differences between insurance status, between age, obesity, as Dr. Rodriguez-Gutierrez mentioned? Also justice-involved persons, persons who have different levels of environmental exposure, as well as their immigration status and their religion. This is an example of one of our consensus guidance statements. This is from the cardiovascular complications statement. And as you can see, we have it separated by categories. There's a general comment that is made about what is known, and then also clinical considerations. So for example, in this one, this talks about biologic sex, and it mentions how women or biologically females may have some difference in cardiac risk factors and how we need to take that into consideration. Another example is how if persons who are pregnant, they may present differently with their COVID or their long COVID symptoms compared to someone who is not. So that's an example of a specific call-out. Not only is this health equity statement or this health equity table within each consensus guidance statement, there's also specific language within the statement itself, which addresses some of these components. This is another example. This is from the breathing discomfort statement. This talks about persons with disabilities, specifically spinal cord injuries, and how oftentimes individuals with spinal cord injuries may have differences with their lung capacity. So now you have this person who now is also trying to recover from long COVID. Their system may respond differently from the person without the spinal cord injury. So again, it's a call-out for us to pay attention to these differences and make sure that we meet people where they are to make sure that they have access to the care that they need. So in conclusion, this is an example from the CDC. Clearly we're not going to address all of the health inequities in this session itself. This is a much larger conversation. But the CDC has this resource. It's called Promoting Health Equity, a resource to help communities address social determinants of health. And it's a way they go step-by-step. Again, remember that infrastructure that we talked about. They go through how would you develop this in your particular community. So I just want to invite everyone to take a look at this. If you look at the picture on the left, it talks about when inequities are high and community assets are low, health outcomes are at their worst. So you see the tree on the left-hand side. It's pretty much dying under the weight of all of the other inequities. Compared to the tree on the right, when inequities are low and community assets are high, health outcomes are at their best. So the tree is flourishing, the tree is getting what they need, and it's creating a community for the individuals as well as the society. All right. Thank you for your attention. Two wonderful talks and two more talks coming up. A tag team, Dr. Eric Herrmann, special call out to Dr. Herrmann. He's not a physiatrist. He is a family medicine physician and we really appreciate your participation today, but he's been a wonderful leader. He's one of the co-chairs of the collaborative along with Dr. Abramoff. Dr. Herrmann is a chief primary care and population health officer at Oregon Health and Sciences University, and following will be Dr. Ben Abramoff, who's an assistant professor of physical medicine and rehabilitation at University of Pennsylvania's Perelman School of Medicine. As I said, both of them are co-chairs. There's a third who we'll be meeting tomorrow as well, Dr. Maley, but thank you guys. Thank you very much and thank you for letting me be part of the best kept secret of medicine. Kind of enjoyed hearing that. I thought that sounds great. That's a good moniker to have. So Dr. Abramoff and I are going to talk a lot about the past clinics and the role of physiatrists and collaborating physicians, and I'm going to start it off with one little point about setting expectations between specialists and primary care. So we all devoted our lives to studying medical science, but oddly enough, some of what determines our success the most is predicated on the relationships that we create with our patients, with our team members, and with ourselves. And so key to that aspect of relationships is communication and setting expectations. And so as we think about these patients and the access and the challenges they've had with access and diversity and these complex systems, having continuity of care is critical, and it's really important that we keep in mind what it's like for these patients as if they were our family members going through a fragmented healthcare system. So continuity is king and relationships are important, and this is really some tips that we hope will help understand how do we thread that needle of helping patients through complicated systems that have, in many ways, varying degrees of clinical knowledge, different types of systems, and in order to thread that needle well, it really comes down to continuity. So first, what about our PCPs? What do we know about them? Well, they're pretty skilled at working with a lot of chronic conditions and acute concerns. Hypertension, diabetes, AFib, broken bones, fingers, toes, you name it. That's what we do. But we didn't get a lot of training on dysautonomia, mast cell activation syndrome, POTS, small fiber neuropathy. It just wasn't there, and as you all know, if you're experiencing challenges in your capacity you can imagine how that's helping us. After the pandemic we are all over-paneled. We have almost no time for any of the patients to do things the way we want to safely and that creates a lot of access challenges. So what are we looking for? We're looking for you guys to be trusted partners, to help us co-manage these patients until they're stable. We're looking to you guys to help really set the... Be available ad hoc, so in between your follow-ups if something happens that seems complex and concerning to the patient that is in some ways beyond what our area of expertise is, we need your access. We need you to pick up the phones and tell us to be able to say, what's happening here with this peculiar symptom? Maybe it's mast cell. Maybe it's POTS. I don't know. So really looking for you as trusted partners and some way that that can be leveraged is in your documentation. The plan of care you create should be done with a longitudinal perspective. What is I doing as a physiatrist? What is this person doing as the PCP? And setting those expectations with the patients so they know who to call. Otherwise they're going to call you. They're going to call me. They're going to call anyone they can and that puts all of us at odds. So really setting that out and reinforcing that with the patients will go very far. I know not all PCPs are available and love to answer the phone, but many of us do. And getting a call from you to say, you know, can you help me understand what this patient was like before long COVID? Was the asthma an issue? Was there a mood disorder that complicated things? Maybe, maybe not. And then, you know what? I was also looking for the echocardiogram. Things I can't find. Do you have access to that? That builds, that starts the relationship. That starts it going. And it really gives us the ability to connect with you because again, we want to think of these as our family members and making sure that they go through the system together. And it really means a lot to patients when specialists, physiatrists are communicating with PCPs and we're all on the same page. When you're starting medications, particularly for POTS or other things, these are some brands of medicines that we don't often prescribe. The Midodrine, the Flutocortisone, you name it. And so carefully outlining this is how you start this medicine. These are the side effects to expect and this is maybe how you switch off or taper. Outlining those helps us help the patient when we get the calls and saves us both opportunities. And then lastly, gratitude goes a long way. So expressing that appreciation for co-management can really help out. So now I'm going to turn it over to Ben. So we're playing a little bit of musical chairs, but... So under that kind of communication structure working with PCPs, I'm going to make the argument of why having a home for these patients with long COVID and complex stability in general is really important. So what we heard, what we saw summer of 2020 was patients who had survived COVID had this feeling of being much worse in many aspects of their lives. They couldn't function cognitively, they had worse in quality of life overall. And they were being told, okay, you're having some chest pain, go see a cardiologist. Cardiologist doesn't know what's going on, go see the pulmonologist. Pulmonologist says, well, it's not really your breathing, testing is fine, your normal PFTs, go see a neurologist. And they go get shuffled from provider to provider, oftentimes getting more and more testing, more and more bills, and they would just spiral out of control. And so under that framework, patients really needed a home in the medical system. And I'll talk about what we did a little bit at Penn, but also what other clinics are doing around the country to try to provide that integrated multidisciplinary care. And often, even not to blame the other providers, the pulmonologist or the cardiologist, but they hadn't seen long COVID before, obviously, and they hadn't seen chronic fatigue syndrome. It just wasn't things in their expertise. So this idea of having a home for these patients is within national guidance from National Institute of Health and Care Excellence in the UK and the CDC, both recommending multidisciplinary care, integrated care, often with one physical home location. And so this is from a survey we did a while ago now, but most of the long COVID clinics, just to give people a little bit of a sense, were homed in PM&R, but also some were in pulmonology, some were in internal medicine, family medicine. Throughout the whole health system, these homes can be found. And some clinics were seeing multiple specialties during that initial visit, up to, in some cases, more than six providers being seen at that initial visit. Others would only see one during that initial visit, but they'd have many different members of the team. So they'd have pulmonologists, they'd have cardiologists that they would go to for the specific long COVID issues. And so other findings from these surveys, all the clinics that were long COVID clinics had multiple specialists involved. Some used more of that hub and smoke model where they had a home and then they get referred out. Some had integrated clinics. And I think this has maybe even changed a little bit more over time as some of the resources get spread thin and the integrated clinics can be harder to maintain in a lot of cases. Specialties that tend to be involved include PM&R, physical therapy, pulmonology, cardiology, and neurology. And again, not meaning they're seen at the exact same time, but they're all involved in the clinic. About half the clinics at the time of the survey did have some sort of interdisciplinary team meetings. And all of the clinics essentially partnered in some extent with the primary care, whether that's education or communication, and that's really important for these clinics as well. There was a systematic review of long COVID clinical models and some of the highlighted principles include multi-disciplinary teams, integrated teams, self-management, coordination of care, things that I think as a specialty we emphasize and we do really well. Components included standardized symptoms assessment, referral system, follow-up system, you know, these continuity issues that Dr. Herman was mentioning. And I'm not going to go into this at all, but there are numerous published clinical models that are available, I'm happy to share with you guys, that show how you can create these clinics. So just to give you a sense of what we did at Penn, our clinic is centered in physical medicine and rehabilitation. Again, physiatry, background and caring for patients with complex, disabling conditions. This is our PM and our team, I think Dr. Caldera is in the crowd too. We have a social worker who's involved in a lot of our patient's care as well. And then we partnered with different clinicians around the health center. So pulmonologists, cardiologists, neurologists, PTs, speech language pathologists, helped create a program, helped know who to send patients to if there were complex cardiac issues. And then in terms of when we would see these patients from their primary care, we generally hope...emphasized, you know, within the first few months, go to your primary care doctor. There is a certain degree of natural recovery, but then later on, usually after three months, that's when, if they're still having symptoms, come see us as an integrated system to see the different providers and to see us. We do a one hour comprehensive assessment via telehealth. We ask about their medical history, comorbidities, medications, testing, what type of symptoms they're having. We use various standardized screening questionnaires for all of our patients to make sure, you know, knowing that this is a multi-system disorder and patients have cognitive dysfunction and they have a lot of things that they want to present, we give them the opportunity to kind of express those symptoms. So whether that's cardiac symptoms, pulmonary, anxiety, depression, PTSD. And then we ask about social employment history. Obviously, lots of patients lost their jobs during the pandemic or are unable to work because of ongoing symptoms. And then, again, we're not going to look at this in too much detail, but based on the symptoms that they're having, we'd get them to the appropriate specialist, we'd prescribe the right treatments, or we'd get additional testing in some cases. Now, as time has gone on, more and more of that, as we've kind of learned from our partners across the health system, is being housed within our clinic. And so we're doing more of the testing, we're doing more of the assessments that might have been done by specialists initially as we've learned more. I think these clinics can also provide an important partnership with patients. We can be that point of contact. We can synthesize new information. When new literature comes out, we can tell them, well, that sounds reasonable or that's really a small study that doesn't have a lot of clinical application at this point. If they have a new symptom, we can kind of give them guidance, hey, that's not really long COVID, you should go see your PCP to discuss that. Accessibility, where we can, we try to get as timely appointments as possible. We always schedule routine follow-up so we can have that continuity moving forward. And we also provide self-management tools within these clinics. How can we make... What programs can we do at home? Pacing, guidance on physical activity, breathing exercises, all these different elements that I think are really important for an integrated long COVID clinic to prescribe. And then I think the community partnerships are also important. So providing that case management social work where we can. Help with disability paperwork. About two-thirds of the long COVID clinics that we surveyed do provide support for that type of paperwork. Working where you can with advocacy groups, even giving the patients information about patient advocacy groups. Because to be honest, some of the groups that are on Facebook can be somewhat detrimental, but there's also really good groups that can be very helpful for patient giving responsible information in a way that's not harmful. So that's the support groups. And then connecting patients with publicly available resources. There's a number of websites out there that can be really helpful to let patients know how do I manage my dizziness when I stand, my palpitations, my fatigue. And they can dig in more and get these tools that are very helpful. I'm going to be honest, there's a lot of barriers. Eric and I were talking before this lecture about a clinic that recently closed that was getting a lot of... It seemed to be getting a lot of support and was involved with research and kind of closed out of the blue. And one of those is needing more staffing, needing more case management. Even that paperwork can be really overburdensome sometimes. Time, coordination, different EMRs between the PCP in some cases and the specialty clinic not communicating with one another. Just to review, patients will come in with literally stacks of records or files of records and having to go through that can be really time consuming. And just communicating with their therapist, with their other providers can be very burdensome. Again, lack of clear evidence. We don't always know what to do. And that can be really challenging for many clinicians. We don't have a treatment that works. They may not get better. So how do we work under that framework? Delays in accessing service. This is a frustration I think for many of us. Hey, you really need to see the pulmonologist. Okay, pulmonology is seeing patients six months out. That's really challenging. Then we have to email or call one of our friends to try to get them in sooner. That's a real barrier and kind of limits us in our clinics. Mental health support, I think we all know that can be a really struggle for patients to get a psychiatrist or psychologist, which can be really important for some of our patients. Helping with research, that's another thing that clinics identified as barriers. So what else can our clinics do? Long COVID clinics, we can validate the disease. It's not all in your head. It's not something you just need to push through and you'll be better. Patients get back on the bike. You'll feel better in six months. Admit knowledge gaps that we don't know everything, but this is what we do know. These are things that we know can be helpful. Patients often like to hear and appreciate discussion of what could be going on. These are the different theories. This is what we know. This is what we don't know. It can, again, help with that validation. And then managing expectations. Patients do get better. I've had patients get better after a year of being sick. Maybe not to 100%, but they feel better than they did when they first started seeing us in clinic using things like pacing. But knowing that it's going to be a slow process, but we're going to be with you hand in hand the whole way is extremely important for our patients. Another element is setting goals. Focus on feeling better. Maybe not fixing the problem, but how do we get through our day-to-day life better? We, in our clinic, really describe a palliative and symptom-based control, symptom-based management. So how do we, again, make you feel better? And we address comorbidities, whether that's autonomic dysfunction, sleep, abnormalities, depression, anxiety, to make patients feel better. All right. Tag again. So thanks. So a moment to talk a little bit about, I think, what might be the tips, the things you want to have in your proverbial back pocket, your And so this is some information that we, you know, for the long-clinic we started in Oregon, these are some of the things that I think if you're able to have as you get started can really help you be more efficient with your patients and yourselves and your documentation to work along. So first of all, a documentation template. I'm going to show that in another moment, what we do at OHSU, the one I created that just really kind of helps synthesize things together, because you can spend hours on your charts and that's what we don't want. And so then patient instructions. It is so important to make these concise. We've heard about the brain fog that cognitive impairment have. Patients can't go through 20 pages of patient instructions. They need just the right information at the right time. And having that clearly laid out also helps the PCPs as they see exactly what's being conveyed to their patients and they can help support that too. We talked about the co-management expectations and then the knowledge toolkits. The guidelines we've been promoting are so important for all of us to understand what really is the expert opinions out there, how to go, but listen to the CDC, the published research. So kind of have that at your disposal. So screening instruments. So there's a variety that we all use and have been talked about in our surveys, but things that are of great importance, MoCA, the COMPASS 31, looking for screens for dysautonomia symptoms, PHQ-2s, PHQ-9s, and then please don't forget about screenings for social determinants of health. It's critical. And then many of your patients, like our long COVID clinic is one of the only ones for the whole state. So we have people coming from all over Oregon to see us and then they have to go back into their community. And so we have our guidelines for our return to activity programs or the occupational therapy, speech language therapy. We have them ready to roll so that our teams can discuss that with the teams or wherever they're going. So have those protocols available for wherever your patients may be going back to your home state is important. And then we talked about how difficult it is for a patient to navigate through the system. And so I know resources are tough, but you can't do this work well without having support to help coordinate care for patients wherever they may be. So having a nurse, a social worker, community health worker, having that team help patients that are having brain fog, navigate the system, their appointments, getting the education they need, helping them manage and navigate social determinants of health barriers, all of those things. And of course, virtual visits. A lot of us like to see patients in person so we can do some of the screenings we want in the exam, but so many folks that are suffering from post-exertional delays can't even get out of bed. So coming to a physician's appointment can be exhausting, can trigger symptoms and make them worse. So whenever possible, if you can, leverage a virtual visit. stipulating the longitudinal plan of care, expressing gratitude for the co-management, who's doing what, and then a clear number for care navigation. Where is the patient going to go and what are the nurses supposed to help with? Are they supposed to help with coordinating visits? Are they supposed to help with navigating social determinants of health? Are they providing education? Patients aren't gonna remember everything they heard in our visit. And so having the nurse be able to explain it in simple terms goes a long way. When you think of follow-up, a lot of times as Ben's talked about, we see the patient January 1st, but their likelihood of getting established with physical therapy and getting the pulmonary function test and an echocardiogram could be weeks beyond that. So I often make sure patients are able to follow up with us, at least coordinated with these other visits so that their time is well spent. And once they sort of understand the program and the approach, you can really lock in with them even tighter. So think carefully about the follow-up time and making sure. And then make sure patients understand where to go in between visits. Call the nurse, use MyChart. Here are the real clear places that you can get help in between visits with us because they look for that light that they get from our visits, but it can be very dark in between. And so knowing there's help in between those visits is so important. In the HPI pieces, you'll notice I focus right here on the quality of life immediately because that's where it counts. Patients' long COVID journeys are complex, variable, and really broad. And so helping the patient know that you're on their side and you wanna know what's affecting their quality of life the most first really can earn trust with the patient and help you focus the rest of your visit. And in some of these sections here in the review systems, you notice these are dropdowns in Epic, right? I'm happy to share. But you can see that we're really driving quickly to understand the PEMs, the POTS, brain fog. All of these dropdowns really help us do that. And this is structured so that when the patient talks about symptom A or Z or X or P, and they're all over the place, you can quickly dot where they're going and then see how it gets synthesized into dysautonomia or mast cell activation syndrome, those kinds of pieces. And this is to please the health and wellness, which we heard about already. Patients also have cognitive fatigue. They can get post-exertional malaise. It's triggered from emotional stress, from physical stress, and from cognitive stress. So knowing what their work life is like, knowing what their financial stresses they have, and their family support can really predict their recovery and how quickly they'll recover. And if you see that there's a problem with them needing to go back to work too quickly or they don't have family support, you can just guarantee they're gonna have problems and really doing everything you can to help support them. And so moving into kind of the sections of the past medical history, tip here, you can, thank you, you can do this before the exam and you can bill for it later so that that helps make sure you have. So, just to kind of conclude about these care homes, these long COVID clinics, integrated care is a potential mechanism to improve care of long COVID patients. Lots of different models out there. They can be resource intensive and require significant coordination, but that coordination is very important. There is some preliminary evidence suggesting benefits of rehabilitation as part of the team, but there's no research yet that suggests one model is better than another. And it's a need, so we can get the support. We can get the government policies, the grants to help support these clinics. It's hard to do these studies, but they're important. So, if thinking about starting a clinic, collect data. Thank you guys. Wow. We got through an awful lot of information. I have a sense we may be losing or have lost already our live stream, so if we have, I apologize to those who have been live streaming. We will take a few questions. Again, you have to submit your questions via the app, but there is a session after this, so we will have to move on. But I do want to thank all of our speakers, Dr. Flanagan, Kavitha Niroconda, Lisa McCorkle, Monica Vedusco-Gutierrez, Talia Fleming, Benjamin Abramoff, and Eric Herman. Wonderful work. Wonderful collaborators. There were a few questions. I don't know if our panel wants to come up so that they can answer them. If you want to make your way up here, I will read off this question. Would recommendations for these patients be potentially useful recommendations for patients with CFS-ME? My hope is that there will be overlap for PASC treatment and ME treatment research. So these recommendations in terms of CFS-ME, what are your thoughts? I don't... Hello? I wouldn't say that PASC or long COVID is a synonym with chronic fatigue, but there's definitely a lot of overlap. One thing that we've all heard is that patients who have had long COVID or who have had ME-CFS, knowing all of this research and money is going into long COVID has been a source of hope for them, which has been, you know, before long COVID, really neglected and uninvestigated disease process. Thank you. Hopefully the microphones will work now. How does AAPMNR plan to advocate for federal funding of clinical programs providing long COVID care? So we're in the midst of doing it. You know, it's part of, thank you for being active in the academy and paying your dues and that way we can work with advocacy lobbyists that are able to support these efforts. So that way we have a seat at the table, that we have people who are talking to Congress that, you know, we have these opportunities. to that, too, as part of the release for different consensus guidance statements, CDC has actually asked several members of our team to present at this... Thank you. I think we're allowed to take one more question and then I see here on my little message board, hard stop, but of the past collaborative clinics, were any of them from a rural setting? How many were from academic settings? We definitely have at least one from a rural setting and then probably most were academic. I'm not sure of the exact breakdown. Okay. We're going to have to stop there. Thank you for your time. Remember, there are two more sessions on this past collaborative and post-COVID work. One tomorrow morning at 8 o'clock and one Saturday morning at 8 o'clock. So please do show for those as well. Thank you so much.

healthcare disparities

COVID-19

long COVID

unequal access

marginalized communities

equitable healthcare

health equity

patient inclusion

comprehensive care

clinical programs

advocacy