Thank you for those of you who are here today, going strong on a Saturday in beautiful San Diego. Good thing the weather is terrible and it's kept you inside for the day. So just asking to, you know, silence your cell phones while you're here. Please, on the app there are individual session evaluations, so if you do the individual session evaluation, it'll actually look like some people were here and it'll help with future planning and then also go to the PM&R Pavilion. If you're still here tomorrow, there's Phys Talks on Sunday morning with complimentary breakfast, so that's always a good, good time to hear from our colleagues. All right. So welcome. We'll be talking about advancing equitable whole person care for long COVID and lessons learned from the first year of the AHRQ grant for the group. So I am not Poonam Pardesene. She was unable to be here. She works for AHRQ, the Agency for Healthcare Research and Quality. So we had presented also at ACRM, and so because I was there presenting with her, I'm going to be presenting her slides and you could imagine that I'm coming from AHRQ and telling a little bit about the good work. So there is a long COVID care network. And so the purpose of the network when they created it and created this funding mechanism was kind of the idea of how do we expand good, comprehensive, coordinated long COVID care across the country, really making sure that it's person-centered and knowing that long COVID is something that is impacting millions, prevalence of probably 10% of the population, but really be able to get to underserved populations and rural populations and patients that were obviously more impacted by the COVID pandemic and therefore have long COVID but don't always have access to the best of care or any care. And so there were initially nine, and then with an addition of they had extra funding for three, so there's three cooperative grant, now 12 cooperative grant awardees, and there is also they have a support and evaluation contract, and we have now been doing this for a year. That year went very quickly, and I don't know, you'll see at least from my talk, sometimes you don't get as much done as you had in your mind when you set out for the grant the first year, and we just kicked off the second year in September. And thankfully there was no government shutdowns that stopped our grant money from coming in, at least for now. All right, so these are the grantees. The grantees, you can see, are actually spread across the United States quite nicely. I'm from UT Health Science Center in San Antonio. You'll hear from two of our other speakers today. So what is nice is that you can see that some of these areas, even though, you know, it would be one place, they really cover a large part still of the United States, because on the map it's still, the green is the areas that some of these places serve, like in Washington where they cover five states, and so that's something also in Texas. We cover probably all of the, you know, the bottom half of Texas with our reach and with part of what we're trying to do. So what are the core network activities that are happening? So definitely, how do you do clinical care and deliver clinical care efficiently, effectively? How do you do it, you know, as a team, together, both ways? How do we educate primary care? That's a huge thing, and we know that primary care sometimes has really very limited time that they can see patients, and they definitely don't want to fill out a lot of disability forms, and they may not completely have time to, you know, understand all that a complicated long COVID patient can have, especially when they come with, you know, 12 different problems. And so how can we educate and support primary care to be the first line and help with long COVID care? Also, we realize that there is a lot of lack of education for patients also in some of the community, especially under-resourced patients and under-resourced communities. And so some of the grantees are specifically working on getting, disseminating information even in community, and you'll hear a little bit about what's being done for that. We between ourselves are doing a lot of shared learning and have, you know, monthly meetings and newsletters and trying to disseminate the work that we're each doing. And again, reaching the priority populations that we talked about initially, which are, you know, the large percentage of people with long COVID, especially ones that are underserved. There is a support and evaluation contract, so we are working, or the AHRQ is working with 2M Research, so 2M is kind of, you know, helping coordinate the meetings, helping coordinate the data polls, helping coordinate our team so that way that we are working together and engage us and build our learning community. They are, you know, making sure that we're identifying, we have a large box, we put stuff into the box and we remember to put things in the box so that we can share between each other our resources and our tools, and at the end they'll evaluate the overall initiative. But one of the big things 2M is also doing is making sure that, you know, within our EMRs that we're collecting the data that we were, the data points of what is this long COVID clinic doing, what about the other clinics that we're engaging with in rural communities, and, you know, what is going to come out of that. So hopefully more to come with time, and 2M, they've been good to work with. They push us pretty well. All right. And other external contributor groups, so they're, you know, also involved subject matter experts, or of course also the subject matter experts are also in some of the grantee sites. Health system leaders, they want to also hear from payers and policy makers, so if you look at the list, and there's a list later, it's like, you know, this is AHRQ, but they're also wanting to gauge CMS and HHS, and they want to for sure hear from people who have lived experiences, because these are the people who are suffering, these are the people who give us guidance in the things that we do to really make this truly patient-centered care. And then also professional associations, one of those associations being the AAPM&R, so, you know, we're thankful that the AAPM&R has a relationship, and, you know, when it came to them knowing we were going to have this meeting, then, you know, AHRQ said, let's put together a presentation so we can put our best foot forward and talk about what's being done, because there are a few of the sites that are led with PIs who are physiatrists, so it's a big deal when physiatrists get federal funding for the work that we're doing. Part of the learning, so this is some of the learning that's done. There is an annual in-person meeting, it was just last month, October, yes, and monthly newsletters come back, there are monthly virtual meetings, and sometimes they are with quite a frequency, so they are getting us together quite frequently. We're starting to work on some collaborative publications, there was one recently that has been submitted looking at, you know, the need for care for underserved persons who have long COVID, and then there is another specific group, there are two specific groups, one that works on clinical care and improving clinical care, and then there's another group that's working on education, disseminations, ECHOs, tele-mentoring types of things, so those are, like I said, all these meetings going on, because they're kind of main focuses of the whole project. Okay, press the wrong thing, but, all right, so these are some of the mixed methods evaluation when we're going to look at this at the end, so reach, so who was reached by the project, so it's looking at, you know, what gender, age, background, zip code, whoo, sorry, and so lots of seeing who's been reached, but also, you know, patients, outreach groups, everything else that we're doing, you know, what strategies are we implementing, how are these strategies being implemented, how implementable are these strategies, and then the impact, what ultimately are the outcomes that we're looking at, and there's, you know, we've had lots and lots of conversations about what are the, you know, the outcomes that we're gonna be asking about, you know, different promise measures, different functional measures, so hopefully we'll get a little bit more data from that. So what are some of the year one accomplishments? So at this time, I will say they have not been able to pull data from every, every site, because sometimes there are hurdles to go through, so even our own site hadn't been able yet to pull the data to get it to 2M, which gets it to AHRQ, but at least the ones they've pulled, in the first year, there's been over 3,500 patients who've been seen at these nine slash 12 clinics, so, because at first it was nine now plus long COVID clinics, and then there's partnering clinics, like some of these clinics are working with FQHCs, some of them are working with primary care centers, a lot of these clinics were set up previously, and so they'd already had a big base of patients, but there was at least a third new patients who were seen in these long COVID clinics during the first time, because if you know, we were talking at our own long COVID, like with my own clinicians at our clinic, and I was like, you know those bells from like cancer care, and you like ring it at the end when you're cured, and you finish your cancer treatment, like we need to have that in long COVID clinic, but actually, it wouldn't be ringed that often, because the patients continue to have chronic needs, and they're, you know, coming back, there's not that many that you can say like, oh, just come back PRN, and so it's kind of hard to access, because there's, you know, patients then become chronic in your clinic. We want to know about definitely wraparound services that are commonly used, one of these things that some of the clinics have used the funds for from the grant is to get social services involved, to get case management involved, to get nurse case managers, and those have been essential for making these clinics successful, especially reaching the groups that we want to reach, and there was one new clinic that started that, you know, got funding. There was one clinic that had closed and were able to reopen when they got the funding, so that was great, and then, like I said, there's several new staff hired, and you'll hear a little bit of examples from our different clinics of who we've been able to bring in, and then they look also at average wait time, so, you know, I think the average wait time that Poonam talked about was about six to eight weeks. It's still about three months in our clinic right now, but some clinics have a lot more access right now, and then education and dissemination is another really important part of this project, so there's multiple education sessions that are happening, like I said, there's Project Echoes, and there's community sessions and community listening sessions, they're engaging primary care physicians, there are publications and provider and patient-facing products, so a sharing of, like, education to give community members or to give patients, and, you know, what can you tell patient education sheets to tell them about pacing or about, you know, what to do in other situations, and there is a lot of community-based events and talks, and this is now the third conference presentation, and then even one of the grantees gave some congressional testimony. Here are the federal collaborators that are working with AHRQ on this, so it's wonderful, you know, CDC, Social Security Administration, CMS, you see the whole list that's there, the VA as well. And then here are some more resources if you'd like to learn more, and we're working on the, they're working on the first public report to come out soon, and continue to work on efforts to address long COVID. If you want to email Poonam, you can, and that's her information, thanks. Thank you, Monica. Let's see if I can get to my slides here. They're going to magically show up here in a second. Okay, great. So, hi, I'm Dr. Jana Freedley. I am the professor and chair at the Department of Rehabilitation Medicine at the University of Washington, and I am one of three co-PIs for this AHRQ grant. We have titled our, our grant title is Improving Access and Delivery of Care for People with Long COVID in the WAMI Region, so for those of you who are not familiar, the WAMI region is the five-state region in the Pacific Northwest, so the University of Washington serves a population in Washington, Wyoming, Alaska, Montana, and Idaho. So I'm going to share just a little bit about what we've been doing over the past year and some of the history of our, of our team. So just wanted to recognize all of the people that are part of our investigative team for, for this grant. This is just a subset of the people who are working in our clinic and in our, in our space and have contributed to the care of people with long COVID at the University of Washington. I want to say a couple of things about our team. One is that we started this clinic back in late April, early May of 2020, so right in the beginning of the pandemic, and we in rehabilitation medicine really jumped up and recognized very early that we were very well trained to be able to care for people with long COVID and that we had a lot to contribute to, to this patient population. So I want to particularly acknowledge Dr. Julie Hodap, who's in the back of the room here, who is one of our clinicians. She has been seeing these patients from day one, so she literally has seen more patients with long COVID than anybody in the country, I think, at this point. So she has been integral to our, to our team. But we started in physiatry, but then after a short period of time, we partnered with primary care. So we partnered with internal medicine and family medicine colleagues, really recognizing, especially once we realized just the extent of the needs for this population that we were, this was going to be an issue that was going to need to be dealt with in primary care, given the massive numbers of patients who were involved. So this really represents a very multidisciplinary team, and everyone has played an essential role in our program. So our clinic is multidisciplinary. It's an outpatient program. We have a hybrid model. We do a lot of telemedicine visits, but we also do in-person visits. We have our clinicians spread over five different sites. So it really is more of a network than a physical clinic. And we have partners across the system that we access to help care for these patients. So who are our patients? We've been collecting intake data since about 2021. We started collecting data for clinical purposes, and we have continually updated how we're collecting data so that we can use it for research as well as QI purposes. But we started collecting data in 2021, and we continue to collect data. What I wanted to show here is just a couple of things I want to point out. One is our population is primarily female, primarily white, primarily English-speaking, and our average age is about 40, 43. And we recognized when we applied for this grant that we were missing large populations of patients, large populations of patients who are particularly underrepresented in our clinic that are hard hit by long COVID. And so that was one of the reasons that we applied for this funding, so that we could try to improve our access and the demographics. So just in the first year of our clinic, we've made a little bit of headway. It's very subtle, but we have made a little bit of headway. We are now seeing a fewer, lower percentage of female patients and a slightly lower percentage of white patients, although as you can see, we continue to have a lot of work to do in our clinic. Most of our patients have comorbid conditions, so this is not surprising data, but many of our patients have underlying premorbid and comorbid depression and anxiety. We also see a lot of people with underlying autoimmune conditions and conditions that are related to the immune system functioning, like allergies and asthma, as well as obesity. One of the things that we found striking in our clinic is that the majority of the patients that we see at the time that they come to see us are not working because of their symptoms of long COVID. And so at the time of the first visit, only 19% of our patients report that they're able to work. So that's pretty staggering. And we recognized early that assistance with getting back to work is one of the things that patients are really looking for, so help with disability accommodations and return to work strategies is something that patients really want. And we also recognize that our patients want assistance with filing for disability and understanding what their potential benefits are through disability. So one of the things that we have done is to really invest in developing a patient guide to SSDI. So this is a fantastic resource for our patients. It's easy to understand guidance on the SSDI process, which is really complicated for patients. So there's a QR code here that links to this guide. We would love for people to use this. It has some specific information for long COVID, but it's actually very applicable to a wide range of patients with disabilities. This is also on our website for our clinic as well and is accessible to anyone. We are also planning through this grant to continually update this as things change and evolve. So if you do access this, it would be great to get feedback from you as well. So if you access this and use this with your patients, we'd love to hear if there are things that we could do to improve this. So our grant has three aims. And so we recognize that in order to improve access to care, that we needed to approach it from several different angles. So one, our first aim was to improve access to our clinic itself and to improve the care delivery that we provide within the clinic itself. Our second one is really to do more community outreach and so to reach out into those communities that we know that we are not reaching in our clinic and to do some targeted outreach for education and to try to connect patients with community services. And then the third aim, and this is probably in my opinion the most important one at this point, is training a network of clinicians, primarily primary care physicians in the WAMI region to be able to care for patients in their own practices and to specialize in long COVID. And this I think is particularly important because we recognize that we can't see everyone in our clinic. There's just no possibility. And we can't even scratch the surface with the resources that we have in our clinic. So I want to talk about each of those different approaches and what we've been focusing on at a very high level. So our first aim is to really think about our own clinic and what we're doing at UW and how we can expand access to care and improve the care delivery. And so some of the things that we have done this past year to try to work towards this is we hired a program manager, Nova Rivera, who's been fantastic and has really held our team together. That's been critically important. We hired a patient care coordinator, a nurse case manager, a patient navigator, and then our program manager and our patient navigator are both social workers by training. And so they have also engaged with social work students to be able to engage them in our team and extend the work that we do. And that's been really important. So you can see that we use the funding for this grant in order to get the clinical staff to be able to run the program and to help with care delivery. And we would not have been able to do that without this funding from AHRQ. We also have been increasing access to vocational services. And as I mentioned, that is a critical part, and so we are working with our vocational counselor and developing more support for our primary care physicians in navigating how to deal with disability requests and how to help patients navigate the system and advocate for themselves and understand how work accommodations can actually get people back to work with this condition. We also have launched tele-mentoring opportunities, so a couple of things that we've done. We started e-consults within our system, which has been really helpful, and then we are now offering office hours for providers, and we started to do that with just our UW providers, but now we're extending that out to the community so that anybody, any clinician, can have a one-on-one conversation with us during office hours to help them with patient care. And then we are working on our patient education handouts. We have several of them now. A lot of the sites around the country also are doing this, so we're coordinating with the other sites so that we're not duplicating efforts and we're really coordinating, but working to get these translated into multiple different languages and to culturally adapt them so that they can be used for different populations. The other things that we have done, we've really leaned on our rehab psychologists, so we hired a rehab psychology postdoctoral fellow as part of this grant, and this fellow is leading both individual sessions for patients, but also is leading our group sessions. So we have developed a very robust telemedicine peer support self-management sessions, and these are led by our rehab psychologists. They're a series of six weekly sessions that are delivered by Zoom. They contain about eight to 12 patients each, and we teach them evidence-based strategies, behavioral strategies to manage a lot of the common symptoms, so fatigue, memory, attention problems, sleep problems, breathlessness, anxiety, and stress, and these have been extraordinarily helpful for our patients. There's actually a clinical trial that our rehab psychologists have conducted, so they did a pilot trial. They presented here at the AA on this in a poster, and they showed that it is feasible, it's acceptable. Patients really like it, and there are signs that it's helping actually with their quality of life and function as well, so that's been really helpful for our patients. So then moving on, so that's what we've been focusing on in our clinic, and I'll have to say, I think we've had a lot of successes, but as Monica mentioned, one of the issues is that these patients are chronic. They have a chronic condition. We have been able to discharge some of our patients back to primary care, but they oftentimes resurface a year later or a year and a half later, so it's just, it has a relapsing, remitting sort of picture, and so we have not been able to extend access the way that we want to to the clinic to see our individual providers. In fact, just this last week, we had to close referrals to any new patient until we can figure out how to better manage our patient volumes because our wait times were getting up to nine months to a year to be seen in our clinic, which is not effective. So we are starting to regroup and starting to look at group sessions for patients, and then really refocusing our efforts on training the primary care physicians and getting out there in that way. So moving on to our second aim, which was to engage with the communities and connect them with the local resources. We've done a lot of community events. We participate in health events. We are really reaching out to communities that are underserved, so our clinic has been focusing on Native Alaskan, Native American population, Southeast Asian, LGBTQ+, and Latino populations, which in our region are the ones that are particularly underserved. And we've had a lot of success with these in really connecting with the community. The other thing that we have done is started a patient advisory board, and we're starting to explore different ways of communicating with our patients and our communities. So we started a Discord channel, for example, that allows for facilitating communication in a different way with our patient advisory board, and that's something that's new to us, but has been really, really helpful. So it's asynchronous. It is easy for the patients to access, and we've seen a lot of really meaningful discussion that way. The other things that we have done, in addition to our patient advisory board and our community advisory board, as I mentioned, are participating in these health events. So we've done four in this last year, and they're very well-received. People in the community find that we have been able to provide them with information that's helpful, and we really encourage them to take that information back to their primary care physicians. One of the other things that we did just recently in October, which was very successful, was we held a one-day symposium. We called it the Long COVID Rise Symposium, and this was something that we marketed both to clinicians and to patients. So we did a morning, a half-day, that was more clinician-focused, and a half-day that was patient-focused. We invited the professional cellist Joshua Roman, who if you don't know Joshua Roman, he is a fantastic cellist who has long COVID. And so he has been doing a tour around the country, really integrating his music with his own personal experience. He's actually composed new music. He has an album called Immunity, and I really encourage you to check it out because it's fantastic. But we held this event. It was wildly successful. We had over, we had 63 in-person attendees. We had 245 viewers online. We fielded 200 questions in the chat. We're having a follow-up Q&A session at the request of our participants. And then we've also uploaded the entire symposium to YouTube, and we're starting to get some traction with that. So very well received. I have in here some comments that patients and participants posted about their experience. And I think what they felt most encouraged by was the combination of the medical information that was really important, but also that connection and weaving in patient stories and the patient experience and really helping them to feel heard was something that we heard a lot about. So then finally, the last thing, as I mentioned, is we're really trying to reach out to clinicians. And so we are trying to train a network of clinicians in the WAMI region to specialize in long COVID care. We're focusing on primary care resident education throughout the WAMI region. We've created special interest groups through internal medicine and family practice organizations. We're holding webinars and CME events. And as I mentioned, hosting MSW practicum students and rehab psychologists. And then coming in the 2025 is a mini fellowship. And this is going to be a robust fellowship that our clinicians can participate in and come away with a certificate. We are working with our Washington State Department of Health to organize this. And I think this is gonna be a great resource for our patients. So finally, I just wanna end with lessons learned and some of my key takeaways from this last year. So some of the things that I have taken away, we have to prioritize patient advocacy in this and engaging with our patients has been really critical. And they have really helped to shape the services that we provide and what we focus on. There's huge community interest. The symposium that we put on was it really kind of far exceeded our expectations of the demand for this kind of programming. And there's ongoing demand for clinical services related to long COVID. We recognize that there's an ongoing gap between our primary care and our long COVID clinics. And I really think that that's what's gonna be critical going forward. And there's a lot of reasons for that, as you all know. It's really challenging for primary care physicians to see these patients in 15 minute visits. But there's also lack of information and awareness and just comfort levels of primary care physicians in caring for the patients. And then where I think we can be particularly helpful in physiatry is really helping primary care navigating that workplace accommodations and the disability advocacy work. And then I'll just say, we couldn't have done this without AHRQ. The funding that we've gotten through them has been critical. We don't have enough support from our own health system to support the work that we do. But this is not enough. So there needs to be additional funding if we really want to make a significant headway for caring for people with long COVID. Okay, so I think I'm over my time. So I'm gonna turn it over to Monica. Thanks. Thank you. Who know I get to be myself for this presentation. I'm Monica Verdisco Gutierrez. I am the Chair of Rehabilitation Medicine at UT Health San Antonio. And one of the co-PIs on our project. Our project in San Antonio is called Comunidad. So Comprehensive Long COVID Care for Underserved Communities, Innovative Delivery and Dissemination Models. So we'll give you kind of a little bit of update there. And this is my disclosures. So it was a very big deal. We're very happy to get this grant. We called it, it's Comunidad, five year, $5 million grant from AHRQ. And this was when there was the meeting last month. I said, okay, what have been our accomplishments? And so I'm gonna kind of touch on these. And then you'll hear a little bit more about them in the other slides as well. But definitely kind of one of the first aims was to expand our holistic multidisciplinary care for long COVID. So a lot of the care was happening and was happening in silos. So we opened, we had our long COVID clinic that we've had since 20, at the end of 2020. And we'd seen patients then, a lot of those had been hospitalized. Now we know long COVID's in a lot of non-hospitalized patients. And then we'd have to refer to other specialties. And I mean, it's lucky that we share the EPIC system, but otherwise there wasn't a lot going on where we were making decisions together for those patients. So we really wanted to offer a comprehensive patient-centered care. And so finally we do have a location where there's a clinic and other specialties are starting to come through, even though it may not be that frequent, with a huge frequency, but it's at least happening where we're like side by side caring for patients. Who have multiple comorbidities with long COVID. One of the other thing is really getting enhanced patient access to long COVID care. So that means again, patients from all of South Texas and getting ones who really need to get into that clinic. And then we do a mix of both telemed and in-person. So sometimes at the beginning it was only telemed and now we have a little bit more space for some in-person options, but still allowing for the telemed for ones who can't get through, get in just maybe because of their physical condition or because of their resources or because of various other reasons. So we have both options for patients. We hired a clinic nurse manager who coordinates patient care. And that's a huge, huge, huge plus that we didn't have before. So she's been able to coordinate care across the different specialties. You know, when we moved to the new place, you know, herself went through, found all the long COVID clinic patients, put them in the right multidisciplinary bucket of clinic they were supposed to be in, made sure that they all transitioned well from either, you know, telemed or one of our other sites. Really helps also our clinicians. She does like 95% of the forms that have to be filled out in the disability form. So that's really, really nice. We just kind of give her like, these are kind of the templated things and we explain things in our notes and then she helps fill out the form. I'll talk a little bit more about community engagement and messaging around long COVID. So there's been at this point, three focus groups where we've gone into the community and different age groups. The third one was actually a younger age group. So it was nice to hear from these different focus groups. And I'll go into that a little bit more. And then really preparation for community engaged telementoring. The bottom right corner is just like, we have had some difficulties with some of the partnerships. Cause part of our, you know, we are a large city. There's a lot of rural communities around us. And, you know, we found even with trying to partner with these communities that in some places where we've gone to talk to them, that the leadership is like, you know, we have doctors here that don't believe in COVID. That don't, like never got vaccinated, never treated their patients, never masks, even during the height of the pandemic. So it's hard to try to teach practice about long COVID if the doctor didn't even believe in COVID to start with. And then they were like, but he's a really good doctor. And I was like, really? Does that really make someone a really good doctor? Okay, all right. These were our specific aims. I kind of discussed that a little bit. Expanding the multidisciplinary care, really partnering also with patient representatives who can lead us also. What are the, you know, the best practices that have helped them from our own clinics? We want to collaborate with the community providers. And one of those things that I will go into is that we created a 15 minute, like we've all said, PCPs have limited time. Well, a lot of long COVID, so two things. First, I always say like every long COVID patient's different but a lot of them are also the same. And so, you know, if you can screen them in these 15 minute evaluation, you may be able to catch some of those things that they have and help the patient at least figure out who needs to go to higher level care and who can just be dealt with in the primary care realm. And then really using, this is part of my co-PIs. So one's from internal medicine and one is from, who's a psychologist. They're part of our REACH Center. So our REACH Center is literally like leading the, you know, reaching out into communities, leading the REACH into doing a lot of echo sessions. So we're trying to also help with, you know, disseminating and into the communities. So it's just kind of a picture of what I'm saying. You know, we have echoes that we're about to start, tele-mentoring modalities. We have, you know, the different, we have also one thing that's important as far as education is making sure that when we have learners come in, so that'd be residents from our specialty. We have psychology fellows. We have physical therapy students. We have medical students. We have now also some fellows from other specialties as we start working with other specialists. And we've created learning objectives, just like you have to submit to ACGME so that there's learning objectives for these learners as well. And again, we're using for our third aim is how do we reach community members, both in our underserved communities and rural population? And we also have hired promotores, which is community health workers. So they are in the community. They are meeting people in their homes. They are discussing long COVID. They are discussing what it is. Like a lot of people don't even realize they have it, even though they have it. And so this is what we're using the promotores for. Just a little bit of part of aim two is like how are we gonna work with primary care sites? And so there's a patient who hopefully is seen by their primary care, if they're even seen by their primary care, but that's another whole talk for another day. You know, we're giving primary care some of the tools, including questionnaires, assessment batteries, telling them which workup might be appropriate when patients come with certain symptoms, giving them some tools, including our own AAPMNR PASS guidelines to do symptom-based targeted approach to start with some of these as first steps, which you can see there. And then if patients need specialists, if they're not getting better, if they maybe need a little bit more education, then they can be referred to our multidisciplinary clinic and either be seen in person or virtually. So this is just an example of some of our focus groups and what's been happening. So some of the things that we're hearing in the focus groups is really, there's a lot of processing, there's a lot of grieving still from the beginning of the pandemic. We really had a lot of loss of life in South Texas. I mean, like it's one of the largest majority, minority Latino population places in the United States. We know this population was hit very hard by acute COVID with a lot of deaths and such. And so many don't know, like I said, don't know what they have long COVID or have a name for their symptoms or a label for their symptoms. And they just call it like ever since I had COVID, not knowing that like, oh, now they meet the definition of what long COVID is. Or a lot don't realize that some of the things that they may have developed were probably attributed to COVID, like increased risk of cardiovascular disease, having diabetes now when they didn't have it before, having strokes. You know, we're seeing that all happening because of COVID, but people don't realize that there's that connection. And there's also confusion, like why are people, why are their doctors not telling them about long COVID? Why aren't doctors telling them that this could be related to that? Why are they just telling them it's, you know, you're just getting old, that happens when you get old, you just get a little brain foggy, or it's just because your allergies are worsening kind of thing. And they're also not being told about any treatments or accessing any treatments. Feel still like younger generations, they're not really taking it seriously. Again, we just had more of a recent younger group. There's a lot of, there was a lot of questions still about vaccines. I feel like we talk less and less about them. And so, but people still wanted knowledge about vaccines. Which one should I get? Should I still be getting them? And so, you know, we have to make sure that we're giving this education. There's a lot of lack of knowledge, trust, resources, a lot of not very many resources in Spanish. One of the big things we notice, I speak Spanish. I have some Spanish speaking patients, not tons you would think where I am, but in Spanish, we don't even have a good, like we can't even decide what's the right term to use in Spanish. There's like a couple of different ways that you can say COVID prolongado, COVID persistente. So we can't even say in Spanish, like the term that we wanna use. So how are patients supposed to know when they're Spanish speaking only? They want, you know, they get medical information more online and word of mouth. And they still want the public to know that long COVID is a thing, that it is impacting people. And how do we communicate that with others? Okay, so since I will say in all my honesty that we're not good at pulling all our data because it's late, because it was like hard to get Epic to finally pull everything. We've seen tons and tons of patients at this point because I said, it's from 2020. And so I will talk a little bit about since one of our aims was to, you know, go to PCPs and educate PCPs and do tele-mentoring with PCPs and echo sessions. But one of the things is a 15 minute evaluation. When a patient comes in, you know, how can they be seen by PCPs and evaluated quickly? So I'll talk a little bit about, you know, the information that we're giving our PCPs or that we've finally made good relationships with a couple of rural community clinics now where they're like open to this. And also it was important to have the grant because part of them being open to this was that we were promising also other than like education and resources, funds to them as well so that they could take the time to learn about it and that they would be willing to do data pull from their EMRs as well. So one of the things that is, you know, kind of 15 minute evaluation, they have to do all these things. They have to identify symptoms, they have to triage appropriately, they have to manage chronic conditions, detect things early that may be a complication and then also support the patients, give them the education and do it in like no period of time. So the first thing for HPI kind of recommending really starting with like, have they had COVID? How many times have they had COVID? Were they hospitalized? A lot of people weren't, but you'll have some patients coming back and being like, I've had COVID five times now and I've had like the flu and they, you know, continue to get sick from other things. And we know that there's an impact in people's immune system. And some have decreased teeth cells. They have decreased immunoglobulins and can continue to get sick and sick with things. Definitely comorbidities, you want to know which comorbidities they have, because there's some things that, I mean, female is not a comorbidity. But we know we're seeing a lot of females who get long COVID. Females who are middle age who might have a higher BMI. And some diagnoses that put people at more risk for having long COVID, like the allergies, the asthma, CKD, COPD, diabetes, heart disease, immunosuppression, maybe even people who are on the hypermobile spectrum. We've seen a lot of comorbidities that you saw in your clinics that were saying, look for these things, because this might put patients at a little bit of risk. Have the person been vaccinated? Have they been boosted? We know that vaccines do decrease the incidence of having long COVID. So if someone's never been vaccinated, then they're having these symptoms, it could be they'd be at higher risk. And listen to the timeline of symptoms, because there is a timeline that has to do with being diagnosed. So definitely tell them, look for overt organ pathology and do that initial workup. So do they have shortness of breath? Do they need lung imaging, starting even with just a chest x-ray or CT and PFTs? And then if those are abnormal, send to the next level referral. Palpitations and chest pains, EKG, echo type of thing. If they have a serious neurologic impairment, they may need brain imaging. Really asking them to assess fatigue and PEM. So really knowing about post-exertional malaise, because those are some of the most common symptoms of long COVID, and knowing the difference of which each of those things are. A lot of times I'll do fatigue on just a simple visual analog scale, asking them like, what's the fatigue, is it zero? You have none, 10, you can't get out of bed. Sometimes I'll ask these, there's part of the DePaul symptom questionnaire, the PEM part of it, they have five items. And again, really easy to kind of ask these five questions about screening for PEM in these patients. And really the other kind of easy question sometimes I ask patients who are really bad is how many times a week do you bathe? Because some of them can't even do that, or they'll do it only a couple of times a week. I want them to be assessed for dysautonomia, because we see, the studies say anywhere from like 20 to 60% of patients with long COVID have autonomic dysfunction. And they can do questionnaires on their own time, not in front of the doctor. And then I also sometimes, Nasaline test takes at least 10 minutes. So that'll take all the time you're with the doctor. So give them instructions to do that at home and get the information back to you, or have the nurse do it. Examination, basic examination that's there. And also maybe looking at hypermobility. Labs are kind of explained there that we give them. A lot of the resources come from our AAPMNR, multidisciplinary past collaborative guidance statements. Hopefully we'll get the compendium out soon. And then when that's out, yeah, come on. When that's out, then it'd be like, we can give them one paper instead of nine papers. And then the last thing really educating about using the long COVID ICD-10 coding, because they see that the U09.9 is the ICD-10 code for long COVID and it's really underutilized. And so really encouraging physicians to start using that code so we can follow more into EMRs. So really the other thing that we've done a lot in our clinic, and this is my last slide, is we try to make it community-based. So we know there's sometimes even limited therapy access in our own system, because they're full of like ortho patients and they like to be full with ortho patients, not so much like neuro or long COVID patients. And so we've worked with therapy places in our community. Plus it's hard for patients to come just here when they're from all over, so that those therapists understand what long COVID rehab is and how to screen for PEM and how to screen for dysautonomia and for all these other things that patients may have. And we're also just trying to work, the psychology fellows are gonna be in clinic and be there. And so it's been a teamwork and it's great to work with the team that I have. Thank you. Hello, I am Abby Chang. I'm a physiatrist at Washington University in St. Louis. So a lot of the themes that I was going to talk about have been covered, which is great. So I can make my talk a little bit shorter and really emphasize the differences in our WashU grant. So although we're funded through WashU, we really wanna emphasize that we have kind of renamed our project, the St. Louis Long COVID Collaborative or the Long COVID Initiative because it is not just us. This is just a representation of all the organizations and there are more of them that are involved in our project. First and foremost, we have patient stakeholders who are key to identifying where our focus is and what we do kind of year by year. We have four federal qualified health centers in the St. Louis area and then the St. Louis County Public Health Department who they really take care of kind of frontline, safety net care, primary care mostly, but also some specialty care and are reaching a lot of the underserved patients that are most underserved in our region. In the St. Louis area, the black St. Louis community has been historically mistreated by academic institutions and is really a population we wanted to reach in this grant. The other population included rural Missouri and the Missouri Primary Care Association and the University of Missouri is helping us reach those populations in rural Missouri and then beyond. If you remember that map that Monica showed when she was Poonam, there's not a lot of other grantees in the Midwest region and so we do get a large catchment area from the Midwest. For those who aren't familiar, we're also working with ECHOs. So a project ECHO is an organization and it's kind of a system of care that's meant to be free CME for primary care teams, not just physicians. And it is kind of a combination of case conference and grand rounds. So it's usually an hour session. A lot of times it happens over lunchtime and there might be a 10 to 15 minute didactic presentation and then a case presentation. And these primary care teams, whether they're physicians, nurse practitioners, pharmacists, community health workers, they can interact with hub team experts on a particular content of choice. And so a lot of the grantees across the country are using ECHOs to really expand long COVID education in primary care. And there are specific long COVID ECHOs, even nationally. I think you're really involved in one of the long COVID ECHOs nationally. One of the things we've found in our region is there's just a large lack of awareness of long COVID and interest in large part due to bandwidth among primary care teams of, I don't have time to go do more education. So what we've really done is partnered with the University of Missouri. They're a super hub team of ECHOs. And so we're embedding ourselves in the ECHOs that primary care teams are already going to. The other big piece to our project and the long COVID initiative in St. Louis is these healthcare intermediaries, largely the St. Louis Integrated Health Network. They're a trusted organization that interfaces between the major academic health systems, other health systems, the FQHCs in our region, and the community trusts them. And so it's really helping us engage with FQHCs in a way that's productive. So our project aims are very similar to the other project aims. We want to expand equitable access to care, improve the care experience for those who are already getting care, and then support primary care teams. So I'll give a graphical representation of what our WashU multidisciplinary long COVID clinic looks like pre-grant and then looks like now. At the very beginning of the pandemic in 2020, our clinic looked a lot like I think what you already heard. It was kind of a come here, you're gonna stay here. And actually, the primary lead of that clinic was a primary care doc. And we quickly realized we did not have the capacity to do that. We had so many patients, the wait time was over one year. And then a lot of patients didn't want to keep having to come because they're from really far away. And so there was some organizational restructuring at the kind of the school of medicine level. So now our long COVID clinic functions as more of a consultation clinic. So the way it's designed, patients are supposed to come into this medical long COVID clinic. And it's kind of initial screening, like do you have long COVID, do you not? Or do you have long COVID and something else that people have just been attributing to long COVID and have been missing, which would be treatable. They refer to other medical subspecialties and kind of leave the long COVID consult clinic if needed, but can always come back. There is limited social work support in that clinic, or that social worker is part time because she does a lot of other things. And then we have this rehabilitative care arm. So WashU physical, occupational and speech therapy has been very involved in long COVID care from the beginning. They offer individual one-on-one traditional care. And then the Living Well Center is a lifestyle medicine based center that's run by physiatrists at WashU and existed pre-pandemic to really offer basics of self-care, lifestyle medicine, kind of nuts and bolts, P and R in a lot of ways. And it has been repurposed to also include long COVID care. So that was pre-grant. With the AHRQ grant funds, we were able to hire a full-time community health worker dedicated to long COVID care. She calls patients, works with them on disability applications, tables in the community, calls skilled nursing facilities, and just spreads awareness in so many amazing ways. We hired a full-time behavioral health counselor because we did not really have timely, true access to behavioral health care for these patients, which is really important for a multitude of reasons. And then at least in Missouri and Illinois, Medicaid does not cover physical, occupational or speech therapy for adults for essentially any condition, let alone long COVID. And so we've gotten a bit creative using shared medical appointments to deliver therapy for these patients with long COVID who have Medicaid or otherwise wouldn't financially be able to access therapy. So shared medical appointments are, it's a completely billable type of appointment. It has to be billed by like a nurse practitioner, physician, physician assistant, but you can incorporate other practitioners. So dieticians, behavioral health counselors, physical, occupational and speech therapists in a kind of a group setting where there can be multiple clinicians, but they're also with multiple patients. That's the shared part. And that is reimbursable by all insurance companies. There's no copay for Medicaid. So it's actually a free way to get PT, OT and speech for our patients. And they get the added benefit of peer support. So we got a little creative there, don't tell them that. With the grant, we also were able to add a peer support group led by our behavioral health counselor, community events, one of which was run, was a Joshua Roman cello event, similar to what Janet described and then a website, which I'll show you more about in a little bit. So just to give a big kind of big picture approach of what we've been doing and what we plan to keep doing, everything we do each year is guided by patient and clinician feedback. So I can't tell you what we're gonna do in years three, four or five yet. I have an idea, but it very well may change. We're getting surveys and interviews each year, designing resources together with our stakeholders and then doing it again. As I mentioned before, without our established organizations that are trusted in the community, we would not be able to make the inroads that we have. And then just a couple highlights on barriers. So as expected, as you've already heard, primary care teams are overwhelmed, they are burned out, they don't have the capacity to do more is what we keep hearing, especially among FQHC primary care teams. And so we knew that going in. As we have tried to make progress, we've realized we have had to readjust our expectations and our goals. So I'll go through that in a little bit. And then also, as you've heard, there is still stigma about Long COVID. Some don't believe in it. Some don't want the diagnosis because of the stigma that others around them talk about. So we knew that coming in. The things we didn't realize was the extent of the lack of awareness of what Long COVID is. So I'll show you a couple flyers as an example in a second. But at first, going in, we thought, all right, our job is to spread awareness about the resources we have for Long COVID that already existed and that we developed as part of this grant. And we realized no one's accessing them because they don't realize that they have Long COVID or that their patients have Long COVID. Primary care providers have a patient panel of over 1,000 patients. And they say, well, I believe in Long COVID, but I just don't have any patients with it. And I say, like, based on the numbers, that's probably not true. So let's back up our education plan. As an example, we gave a full talk to community health workers on how to get patients access to Long COVID resources. They said, that's great, but what is Long COVID and how is that different than short COVID? And we realized, again, like, we really need to back up. The other barrier we ran into from a research standpoint is we were trying to cast a very broad net initially with our surveys to patients and clinicians. It turns out artificial intelligence is getting better and better, and it is harder to tell who is real and who is not. And we got thousands of responses, which is a great number, but we can guarantee you they were not all real responses. So we have adjusted our strategic recruitment, but just a heads up if you are planning to launch large survey studies in the near future. So I do have some numbers to reference what Monica Azpunon was talking about. These are some numbers from the WashU BJC academic system of just the volume of patients that we've seen. So since 2020, when our multidisciplinary clinic opened, there have been over 4,000 patients seen in our system who have been diagnosed with Long COVID using the U09.9 ICD-10 code. This is an incidence plot, so you can see at the beginning of the pandemic, the numbers were the highest. They've gone down a fair degree, but there's still spikes with each wave. This data goes out to July of this year. I do think and hope that the incidence is going down, but as you've heard already, I think it is vastly under-recognized as well. Just in this calendar year through July, we've seen over 3,000 patients with the Long COVID diagnosis. Over 900 of those visits were specifically for Long COVID, and over 400 patients were newly diagnosed. From a clinician standpoint, and the good news is over 1,000 clinicians have used the Long COVID diagnosis code. There are many, many more than 1,000 clinicians in our system, and again, this is just WashU BJC. This is not FQHCs. This is not rural Missouri. So there's some hope, but I still think we have a long ways to go. Another good point is family medicine and internal medicine are using this code. Lots of therapy, lots of medical subspecialties. Pediatrics is the number six user of this code. Just to highlight, kids are not immune to Long COVID, and we don't even have a multidisciplinary clinic for Long COVID in St. Louis for kids, which is something we're working on, but just know anybody of any age can get Long COVID. So just kind of a preview of what we're seeing from our mixed methods results in some of our surveys. You're not meant to digest this whole thing. It's just to show that when we ask patients, what do you need, they need a lot of things. Some of these things are really big and hard to address. Some of these things we've already addressed, which we're really proud of. The NIH Recover initiative is really focusing on treatments, and if we had a cure, that's what everybody wants. We don't have that right now, but we have been able to improve access to therapy. We're helping kind of coordinate access to primary care. We've gotten support groups up and going, both virtually and in person, and our community health worker is helping with disability applications. When we ask clinicians the same question, a lot of this is about access, access to specialists and access to PCPs, time during clinic visits, training. Another plug for the AAPMNR Long COVID Collaboratives Guidance Statements. Hopefully in the next few months, this consensus guidance statement will come out, and it is really meant to be for frontline clinicians. Maybe you are not a long COVID multidisciplinary clinic, but you have a patient who might have long COVID. How do I go through that in an efficient manner? Both assessment and treatment, and then AAPMNR has promised me that we're also gonna have very nice usable tables that can be linked online, so you can have a QR code. You can go to this one website, and you can kind of toggle between different tables and get the information you need rapidly. So that will be coming at some point. So early successes, just kind of quick pictures of what we've been doing. This was our initial flyer that we were so proud of with all our resources, and then we realized we have to take a step back and say like, do I have long COVID? And so we have a patient and a clinician facing version of this flyer. A lot of it is like, what do patients say? I'm just getting older, I haven't been the same since COVID, and I can share all of these with folks too. And just highlighting some of the top symptoms that people with long COVID have that especially might be treated differently than what they're getting right now. So if you have new onset diabetes after long COVID, you still treat it like diabetes. But if you have post-exertional malaise after long COVID, and your doctor says just exercise more, you're just depressed, we can get you better with an SSRI, that's not gonna do it. So we're really trying to capture those patients and then have them come to us, and we'll get them the rest of the resources once they identify themselves, we identify them. This is just a flyer for our shared medical appointments for the long COVID PT, OT, and speech therapy. This is the general structure of what we've been doing. We have a paper that hopefully will come out in the next few weeks in Cardiopulmonary Physical Therapy Journal, CPGJ, that it really describes the process of development and then the content in much more detail for our SMAs. But it's six weekly sessions, an hour each over the lunch hour. We wanted it virtual or in person, but everybody chose to participate virtually this time around. And we're going through kind of bread and butter, PT, OT, speech topics and domains, specifically geared towards how is that relevant to long COVID. There's an individual patient check-in, didactic piece, kind of group support piece, and time to ask questions and answer them. And it's very much goal-based. It's a kind of very traditional PT, OT, speech approach, just in a group setting. So we did our first round of those SMAs in August and September. We had eight patients. Over the course of those six weeks, 29 patient encounters occurred. If you think about that, there were three therapists that were involved and they weren't even there every time. So it's very efficient to get a lot of patient encounters with very little clinician time. So hopefully this is an option that other people can use elsewhere as well. Our peer support groups, as I mentioned, we've got them up and going. Our virtual peer support group is much more popular than our in-person group. But the people who come to the in-person group really want the in-person group. So right now we plan to continue both of them. Joshua Roman came this fall, which was a really great opportunity for our community to come together. And if you're interested and you have a long COVID clinic, we can connect you. He would probably be interested in coming. He's a great advocate. This is an example schedule of our ECHOs that we have presented at and are planning to present at. You might notice that these are the ECHO topics that PCPs and primary care teams are signing up for. So someone who's signing up for the HIV ECHO just happened to get to hear unique considerations in HIV regarding long COVID. And people who are gonna sign up for the dermatology ECHO are gonna hear about dermatologic manifestations and other things that they need to know about long COVID. So this was very intentional to embed training where people are already getting it, even if they're not looking for the training. This is one of our efforts to improve awareness to primary care teams and specialty teams of why it's important to help patients through the disability process and how to do that efficiently. And then these are a few screenshots, kind of last thing we're going through, of our website. If you look now and scan the QR code, the format looks different. We are undergoing kind of a revamp of the design. So it will continue to evolve in the next couple of weeks. But the main content's gonna stay the same. So we have a patient's section, clinician section. We really have our community health worker information right at the top. So if you know nothing and you're brain fogged and fatigued, all you have to do is call someone or email someone and we'll get you connected. In the patient section, we have some very general links to what is long COVID, how do I get started, like basic questions, and then some basic self-management tools. We're really linking to established content because we wanna keep this as succinct as possible. But we also have community resources that are very relevant to our region in terms of where can I get free adaptive equipment that's available? How do I get help with electricity and jobs and things like that? And then in our clinician section, because again, we keep hearing things have to be easier for primary care, our most important piece is how do we get people to the long COVID clinic and how do we get them to all these different pieces? The living well center rehab piece, the consultation piece. So that's where we focused. We're going to link to the AAPM and our consensus guidance statement in this website as well when that comes out. And then this is an example of just black and white. I'm not trying to put pressure. But this is how we get patients to the clinic. Sometimes the right phone number, fax number and contact information is the biggest barrier. So last slide, our main take homes in the St. Louis region to reach people with long COVID, I think we have to identify them first. I do think there are a lot of people who know about it and who want more information. But when we're trying to get to our underserved populations, they don't know about it nearly to the degree to the patients of the white 40 year old female patients who are coming to clinic. And so we need to improve that education. And then finally to improve widespread adoption of long COVID implementation, management, diagnosis, all of that has to reduce workload for the clinical teams, especially those safety net primary care teams who are already kind of drowning in what they're doing. So whatever we can do, whether it's training or offering referral resources for their clinical management that's how we're going to get their buy-in. And that's what we've heard from them. So that's it. I think we have a few minutes for questions to the group too. Thank you for a really wonderful talk and really even more importantly for all the work you're doing in this area. I am a medical director for a disability insurance company and I struggle with a lot of these patients. Really poor documentation of brain fog, really poor documentation of fatigue. So I appreciate your efforts on trying to sort of quantify it a little bit better. What is your, with brain fog, what is your threshold for neuropsychological testing to give some more objective data and how do you see documenting these more soft symptoms if you were of fatigue to help us out, help the patients? So I'll start. I think I have a fairly low threshold. If the patient's being disabled by their cognitive symptoms or they're saying, I can't go to work or they're unsuccessful at work, then I'll try to get them to see neuropsych and for sure also try to get them into speech therapy. So something can be documented or can we see where the weaknesses are or is it not that bad and it's being driven by a depression or anxiety or something else that we can also work on treating. And so I think it's, or like I said, if it isn't that bad, then do we just encourage them to try to work or do we get them back to work in a graduated type of, well, okay, let's start half time and then let's work 75% time and then let's see how you do handling more and more. So low threshold for me and I think we're going to also, because we have now those neuropsych fellows who are going to be in our long COVID clinic, which is again, really exciting, is that do a little bit more onsite screening that we don't have time for in our usual visits. Yeah, I would agree with all of that. One of the things that I try to do in my documentation is to document, when you're having an hour long visit with a patient, I frequently have patients who are having word finding difficulty during the visit. They're losing track of things. You can actually document some of those things in your notes. And so I really try to document it. If I'm doing a telemedicine visit and they're lying in bed because they can't get up out of bed, I document that that's how I'm viewing them. So I do think that we can do a better job of documenting even in our visits, some of those very specific things that people are telling us. And so I try to encourage people to do that. I also try to address all of the other things like sleep and depression, anxiety, other things that can be playing into some of the cognitive difficulties before I get neuropsych testing. We've been working with our neuropsychologists to also try to study a shorter battery and a different battery specifically for long COVID because I think that that would help. A lot of my patients don't actually even want to come in for neuropsych testing unless they really have to because it's four to six hours long and it's exhausting. But I do think that can give you some quantitative data. I have been sending, not specifically for brain fog, but I've been using cardiopulmonary exercise testing and physical therapy evaluations, speech therapy evaluations for documentation of some of the symptoms that they're experiencing. And then a lot of what we are doing is really trying to implement, help people with workplace accommodations specifically for the symptoms that they're experiencing because I have been very successful in getting people back to work with very specific accommodations to help them with some of their symptoms. So one of the resources that we use a lot is the Job Accommodations Network website that has very specific job accommodations for people for each of the different symptoms that they have. And that's a very good resource for people as well. Yeah, the only thing I would add is in our area at least it's still very difficult to get neuropsych testing in a timely and a financially feasible manner for a lot of patients. And so our therapists have taken a lot of the brunt of documenting where are they at, what is their progress. And so objective testing is really, really important and when possible we want it as kind of rigorous as possible. But sometimes patients can't tolerate it or they can't access it. So as long as we can have some sort of documentation, my concern is just that there are patients who really need it. We just can't get that objective testing more than a therapy visit or two. I 100% agree with you. And when I'm looking at a file, I certainly take everybody's notes into account, the therapist, the physician. And it's amazing, you would be shocked at how many physicians out there under physical exam will write a plus sign, positive, brain fog. You know, what do you do with that? So I really appreciate your efforts at all of this. Thank you. Any other questions? Otherwise we will adjourn for lunch if there aren't any other questions. Thank you all. Thank you very much for attending.

equitable care

long COVID

AHRQ grant

person-centered care

underserved populations

multidisciplinary networks

community education

tele-mentoring

healthcare access

patient advocacy

primary care support