All right. So, hey, we want to say thank you to everybody who's coming on the last day for a very early session to join us today. We weren't sure how many people were going to show up, so thank you for your time. To discuss a really important topic. So, a lot of our passions are rural ILV needs, and I think there's a lot of problems with access to care and delivery of care that needs to be addressed. So, today we're going to talk through a lot of these barriers, facilitators, and then things that we can implement to improve access to care. We'll probably hold questions for at the end, and after the three talks, there'll be questions. So, our first speaker is Allison DeDent from UCSF. She's going to be talking about barriers and facilitators to the delivery of ILV care for rural patients. Thank you, Ryan. Good morning, everyone. I hope you have some fun plans today after this. I have no disclosures for this talk today, and a couple of objectives. I'm just going to start by reviewing some of the broad barriers to care that the general population living in rural areas experiences. I will discuss rurality as a hypothesized barrier itself to ILV care, and then I'd like to present some emerging data from everyone up here on some of the barriers and facilitators to ILV care for rural populations. So, just to put it succinctly, rural populations are older, they are sicker, they are more likely to die than their urban counterparts. You can see on the graph shown here on the slide that although age-adjusted mortality rates have been decreasing for both urban and rural populations over time, that rate has slowed for rural populations, meaning that that decline is less steep, and you can see that by the top three lines in red, black, and royal blue in the non-metropolitan or rural areas. So, those declines over time are not happening as quickly as they are for urban populations in the last several decades. Rural populations are also socioeconomically disadvantaged compared to their urban counterparts. They have lower educational attainment, they have increased rates of poverty, they're less likely to be insured, and there's fewer providers in rural areas both primary care and specialty providers. This is particularly problematic for interstitial lung disease because although there are more than 200 types of ILDs, these are still rare conditions and they're very complex conditions. There are numerous presentations that patients may come to clinic with depending on which ILD they may have. There are several different treatment options, and the behavior of ILDs are highly variable and quite difficult to predict. So, within the last decade, the Pulmonary Fibrosis Foundation has really grown these care center networks across the United States, which are depicted by the yellow dots here on the slide, to provide cohesive and centralized expertise in diagnosing and managing these conditions. The issue, however, is that these sites are primarily located in urban areas, and although this does not suggest that anyone outside of these areas is not accessing ILD care, and again, highlights the point that specialty care, particularly subspecialty care, is really concentrated in these urban areas and may be difficult to access. There is not much data looking at urban versus rural differences in care for interstitial lung disease. Our group published this paper in CHESS last year looking at 843 participants who came to UCSF between 2001 and 2020, looked at urban versus rural differences, and we found that our rural patients presented to our center with worse disease severity, so they were more likely to be on oxygen. They had lower pulmonary function measures at the time of arrival. They were more likely to live in neighborhoods with lower socioeconomic status, and they had a trend towards an increased mortality at follow-up, which was probably limited by a low sample size that we had in general for rural patients overall. The thing I want to highlight here is that in our models, when we looked at pulmonary function as an outcome, when we adjusted for some of the individual level characteristics like comorbid conditions, demographics, that's where we really saw those differences between urban and rural pulmonary function measures. But when we then added in area level socioeconomic factors like education level, poverty level, and insurance access, we actually found that those differences attenuated, suggesting that living in a rural area itself is a barrier to ILD care or early ILD care. Similarly, there's a little bit of data looking at access to medications for interstitial lung disease, in particular antifibrotics for idiopathic pulmonary fibrosis. On the left is a frequency graph from the study I just showed you, where rural participants that presented to our center were less likely to be on an antifibrotic compared to their urban counterparts. You can see that suburban participants, only about 25% arrived on antifibrotics, but looking at some of the big data studies that have come out over the last several years, that's pretty consistent with what we've seen in claims data, that about 25% of patients with IPF are on antifibrotics. Similarly, on the right, we conducted a large analysis of patients seen in the VA healthcare system with IPF and their access to antifibrotics both within the VA and also being able to access that if they have Medicare outside of the VA. Only 17% of veterans were on antifibrotics, but rural populations had a lower odds of utilization of those medications compared to their urban counterparts. So I present to you also that living in a rural area is hypothesized to be a barrier to treatment as well. We wanted to attempt to try to understand what some of these barriers and facilitators are, taking it a step after identifying them in some of these prior studies. So we asked, what are the perspectives of the providers that are practicing in these care center network sites with regards to access to care for rural populations with ILD, recognizing that this is one piece of the puzzle, and we also want to ask patients themselves and providers out in the community. But what I'll show you today is data from surveying these providers. So we distributed a cross-sectional survey to all of the Pulmonary Fibrosis Foundation sites between November 2021 and February 2022. There were 24 questions, most of which were multiple choice or Likert scale or dropdown. We did have three free text response questions. We only analyzed one survey per site, so only submitted from one provider, mainly because these sites are variable in their size and we didn't want to over-represent any one region of the country or area. Any additional surveys that we received were dropped. The quantitative questions, so the 21, the first 21 questions we analyzed using descriptive statistics, but the free text responses, we did a qualitative analysis, sorted those into codes, and then drew emerging themes from those codes. And I'll show you what those are on subsequent slides. I'd like to first present some of the quantitative data to you. We initially asked these providers if they thought that rural patients experienced more delays in diagnosis of ILD compared to urban patients, and 57% felt that they often did. When asking the same question about treatment, slightly fewer providers said that they often felt rural patients had delays in treatment compared to urban populations, with slightly more even response between often and sometimes here. Related to diagnosis and treatment, we wanted to understand access to multidisciplinary team meetings or multidisciplinary discussions, which, as many of you know, are the gold standard for diagnosing interstitial lung diseases, but have a lot of requirements in terms of the providers that we'd like to be present, and really just time and resources available to do this. So we asked first, does your surrounding rural area near your pulmonary fibrosis foundation site have a multidisciplinary team meeting? And 75% of providers said no. That's shown up here in the top left corner. Just next to this, we asked a question that really came from the pandemic. Many centers had to transition to a virtual multidisciplinary team meeting. So keep in mind that this survey was sent out during the COVID-19 pandemic. And so we asked if they have a virtual ILD, multidisciplinary team meeting. 65% of our providers said yes, they do. So we asked two subsequent follow up questions. The first, do you have providers external to your site participating in this virtual team meeting? 61% said yes. But when we asked if they had rural providers external to their site participating, 76% said no. So even though the majority of the sites that have a virtual multidisciplinary team meeting have external providers participating, very few have rural providers participating. We wanted to understand access to some non-pharmacologic treatment options for interstitial lung disease, such as clinical trials. 85% of providers noted that rural patients face barriers accessing clinical trials. And with regards to pulmonary rehab, we asked if there were existing programs in the surrounding rural areas. 44% said no. What I thought was interesting about this question, though, is 28% said they weren't sure, which really raises a potential additional barrier that providers at these sites just may not know what local resources are available for patients in rural areas. Lastly here, the barriers to lung transplant. We asked if they felt there were barriers. 24% said that there often were. 54% said sometimes. We wanted to get a little more granular with this question, so we asked what some of the barriers were to lung transplant. Providers could choose any of the options they felt were a barrier. And the most commonly chosen response was actually the cost of transplant. Going back to rural areas living in more poverty than urban areas, this really came up as the top choice. But just behind that, 82% was that they felt rural patients were referred too late in their disease course. Interestingly, the second option here that they lived too far from a transplant center, or the last one that they preferred not to receive one, those were actually the lowest selected responses. I want to move on to presenting some of the qualitative data. Before I do that, I want to show you what the three questions were just to anchor your ability to interpret these results based on the questions that we asked. The first one, we asked if there were challenges in providing care to patients living in rural areas with ILD. The second, we asked them to provide any additional feedback on strategies they used to optimize care for rural patients with ILD. And then lastly, if there was any other information they'd like to provide. When we were sorting through these responses, as you can see by the questions, they really naturally blended themselves into being sorted into two groups. The first, asking about challenges to care, was really asking about barriers to care. The second question, asking about strategies to optimize care, really asking about facilitators. So because of that, all of the responses were initially sorted into one of two groups. If they mentioned a barrier to care or facilitator to care. And actually, most providers for that last question gave us additional barriers or facilitators. So those responses were sorted into those groups as well. After we sorted them into two groups, we coded those responses. Those codes were then sorted into a smaller group of categories. And then we pulled three themes for barriers out of those categories, which are shown here on this slide. The themes are shown in the circles. The categories that comprise those themes are shown in the squares. Most of the coded responses here for barriers had to do with poor health care access. And this had to do with things like the burden of travel, the burden of continuity of care, accessing research, accessing specialty care, the availability of care locally in rural areas, and access to quality services. The second most frequent coded responses came in the theme of limited resources. And this comprised things like digital broadband access, care coordination, fewer assets and services for these patients, and then patient and provider education. The last theme, patient preferences and concerns, this actually just emerged from its own category, which is why you don't see anything surrounding this. This had the fewest number of coded responses, but still came up frequently enough to emerge as a theme. Some examples here for each that the providers gave us in their responses under poor health care access. One provider noted that some patients drive hours or even book flights into the city for their appointments. It's taxing and expensive for our patients. Under the theme of limited resources, one provider noted that there's difficulty obtaining timely lab tests and results from outside health care centers. And then under patient preferences and concerns, one provider noted that they also sometimes have concerns about the frequency of the visits needed and driving in the city. Similarly, three themes emerged as facilitators to care. Local collaboration had the highest frequency of coded responses. Some of these categories included things like education, providing access to care, coordinating care, outreach to the community, connecting to local care and resources, and collaborating with local providers. Telemedicine again emerged as a theme from its own category and had the second most frequent number of responses. And then patient centered care emerged as a theme as well. Some of these categories included efficient care, providing social and economic resources, and attending to patient needs. On this last slide here, I'll show you a few examples of the facilitators that were mentioned by providers. Under the theme of local collaboration, one provider noted that they collaborate with a local primary provider or pulmonologist in terms of direct advantage for the patient. Patient centered care included a statement of we try to schedule testing and appointments all in one visit. So that's that efficient care for patients. And then telemedicine, there was a variety of responses. But one provider noted that they use these televisits in between face to face visits if they're not able to come as often as desired. A couple acknowledgments on this slide, everybody that you see here on the panel today, as well as other members of the Pulmonary Fibrosis Foundation Rural Health Outreach Committee and my funding is listed here. And we'll hold questions until the end. And thank you very much. All right, next up, we have Hyon Kim. She's coming from the University of Minnesota. She's going to talk about rural disparities in access to care and treatment of interstitial lung disease. Thanks, Ryan. So I'm sort of going to build on what Allison talked about, because what she presented is a really good background into what I'm going to talk about, which is disparities in access to care, treatment and outcomes in ILD and rural patients. So I'm from the University of Minnesota. And disclosures, I actually don't have any disclosures relevant to this talk. So learning objectives are to discuss rurality and impact in ILD patients. We know very little about rurality in ILD until recently. And part of that is Allison's publications. So we're just going to talk about rurality, how it affects ILD diagnosis, and some of the data that we have from the Pulmonary Fibrosis Foundation in terms of access to care and outcomes. So just a background, rural versus urban. In the U.S., about 15 to 19 percent of Americans live in rural areas. And this is data from the 2010 census and also more recently from the CDC looking at the 2020 census. So in terms of rurality and health, we do know that all-cause mortality rates are much higher in rural areas compared to urban areas in the U.S. And in terms of pulmonary diseases specifically, mortality from lung cancer is much higher in rural patients compared to their urban counterparts. COPD, which is a very common pulmonary disease, is more prevalent in rural areas versus urban areas. And not only prevalence, but impact on COPD patients is higher in rural areas. So, for example, Medicare hospitalizations and mortality from COPD are higher when rurality is involved. So why is this? Well, one possible factor is access to pulmonologists and specialty care. And that's one hypothesis driving this discussion. So what do we know about rurality and its impact in ILD? And until recently, we knew actually very little. And so some of this background comes from Allison's book and her publications last year in 2020. And so we do know that rural residence seems to be a risk factor for IPF diagnosis. And why that is is unclear, whether it's environmental, whether it's social, whether it's genetic. And I think that's an interesting area of research going forward. But we also know that rural IPF patients had lower use of antifibrotics compared to the rural counterparts. And that, again, is from Allison's work. But similar to many studies, the number of rural patients in that study was less than we would expect from the U.S. general population. So that's a limitation. So that drives our project, our research study, into impact of rurality in ILD. We know this is a huge knowledge gap in ILD. And also, not just knowledge gap, but does it actually affect patients' quality of life and their outcomes? And so this, we think, is an important area of research for patients as well as providers and families. So for this project, we actually used the Pulmonary Fibrosis Foundation Patient Registry. And Allison alluded to that in her talk. The Pulmonary Fibrosis Foundation is a network of 42 ILD centers in the U.S. But keep that in mind. These are patients seen at ILD centers, right? So as Allison alluded to, that is a potential limitation because of distance and other barriers for rural patients to getting to ILD centers. The PFF started a registry. So patients seen at the ILD centers were enrolled in this multi-center registry. So the advantage of the registry is it is multi-center. It covers the entire U.S. But again, the limitation is these are patients seen at these specialty ILD centers. And in terms of this project, we're going to talk about rural versus urban. How do we define that? Urban is large, medium, small metropolitan areas. And rural refers to people who live in micropolitan and non-poor areas. So that's rural. And this is a definition used in, I think, many studies that distinguish rural versus urban. So this is our hypothesis that rurality is associated with decreased access to care and worse outcomes in ILD patients. So how did we assess this? So we, in this study, wanted to look at actual quantitative data. So we defined access to outcomes in terms of access by ILD patients to studies and actual visits. So we looked at specifically number of PFTs per patient, number of chest CT scans, number of ILD clinic visits, and access to what we consider as comprehensive care for ILD patients, including access to pulmonary rehab, supplemental oxygen, antifibrotic medications, and then access to lung transplant. In terms of outcomes, we looked specifically at mortality, acute lung transplant, acute exacerbations, and respiratory hospitalizations. So there's a lot of data. So I'm going to go over this table with you. There's a lot of data, but this is the demographics of our patient population. These are 1,640 patients that were in this study. We didn't include all 2,000 because of missing data. So 1,640 ended up in this study. And as you can see, as is true for many ILD databases, the mean age is a little older at 67.5. Majority male, so about 64 percent male patients in the registry. In terms of racial diversity, the majority is white. So approximately 90 percent of the patients in this registry are white. And then in terms of urban versus rural, 13 percent of the patients in this registry are rural. And we based this on zip code and county data and census classifications. And interestingly, I also wanted to look at ADI, the Area Deprivation Index. This doesn't really include rurality, but there is some overlap. So the ADI is an equation that includes factors that apply to human health. So income, education level, employment, and housing quality. So it's an area, it's a measurement of advantage or disadvantage. And the mean ADI for all ILD patients in the registry was about 43. and just to give you a range, ADI usually reported between 1 in 100 with higher numbers indicating more disadvantage. And so that's the demographics. So one of the first things we looked at is cross-sectional data. We were interested in, is there an actual difference in ILD diagnosis between rural versus urban? And we found that that affected, that difference was actually seen in fibrotic hypersensitivity pneumonitis and exposure-related ILD. As you can see, IPF, the IIPs that are not IPF, other ILDs, there was no significant difference in prevalence between rural versus urban patients. And this is probably, this is probably accurate because of what we know about rural areas in terms of exposures, more agricultural. And we actually looked at county exposure to like mining and manufacturing, and there weren't that many. So it's probably driven more by agriculture. So in terms of access to care, this was really interesting. So looking at the distance, I know this is a lot of data, so I'll walk you through it. The top row is distance to the CCN center. And as expected, patients who live in rural areas drive at least twice as far as urban patients to get to an ILD center. And what I've done is highlighted statistically significant differences between rural versus urban ILD patients. So number of clinic visits, and these are number of ILD clinic visits. So how many visits per patient per year. So the number of ILD clinic visits were lower in rural patients. Number of hospitalizations were lower in rural patients, and number of ED visits. And then access to pulmonary rehab was the other statistically significant difference. Rural patients had less access to pulmonary rehab. But interestingly, if you look at all the other quantitative measures, there were no statistically significant differences between rural and urban ILDs. But keep in mind, this is the PFF patient registry of patients who are able to get to ILD centers. And then this is our outcome measurements. So we did time-to-event analyses, and what this table does is report the hazard ratios. And this first row, or the first section, is looking at outcomes defined by age, different age groups. And as you can see, if you look at what I've highlighted, age 51 to 60, they have higher hazard ratios for time-to-death or transplant, time-to-death transplant or acute exacerbation, or time-to-first respiratory hospitalization, indicating that younger ILD patients have less risk for those events. We then looked at sex, the effect of sex. Is there a difference in outcomes between male and female patients? And keep in mind that these are all ILD patients, not just IPF. So as you can see, male ILD patients in the PFF registry have higher hazard ratios for time-to-death or transplant, whoopsie, time-to-acute exacerbation, time-to-death transplant or acute exacerbation, or time-to-first respiratory hospitalization. And this actually sort of surprised us that male patients who have ILD seem to have less risk for these events because we do know that for IPF specifically, males tend to do worse than females. So why this is sort of the opposite in the PFF registry is a little bit unclear. We then looked at diagnosis and there wasn't much of a difference. And then this was surprising. Look at the county classification, urban versus rural, there were no differences in outcomes. So despite some differences in access to care, it didn't seem to pan out in terms of outcomes. So time-to-death or transplant, time-to-acute exacerbation, time-to-respiratory hospitalization, no differences between rural and urban patients. However, when we look at ADI, area deprivation index, so what I'm gonna do is explain how we did this. We used the most disadvantaged. So the 10% highest ADI numbers. So that was classified as the most disadvantaged and that was a reference. And then we looked at everybody else. So everybody else was less disadvantaged or more advantaged. And what you see is that the less disadvantaged ILD patients had lower risk for time-to-death or transplant or time-to-death transplant or acute exacerbation. So interesting. So our conclusions are that in terms of processional diagnosis, fibrotic HP and exposure-related ILD appear to be more prevalent in rural versus urban areas. And in terms of access to care, rural ILD patients had fewer clinic visits per person per year, less access to pulmonary rehab, and less frequently experienced hospitalizations and emergency department visits. But all other measures for outcome, time-to-FEC decline, time-to-DLCO decline, death, transplant, acute exacerbation, respiratory hospitalizations, really did not seem to differ between rural and urban ILD patients. And I think, I suspect that this is because we're capturing a different cohort of rural patients. These are the patients who are able to get to ILD centers, which tend to be in more urban areas. So that's my hypothesis. And then lastly, less disadvantaged ILD patients have longer time-to-death transplant or death, transplant, acute exacerbation. And why it's unclear, do they have better insurance, different socioeconomic factors, environmental factors, different social support, unclear. So acknowledgements, my co-investigators, Ryan, Yuka Berubia, who was at University of Minnesota and is now thinking of coming back, Emily White, George Lee, and Ann Dimmick. I also want to acknowledge the Pulmonary Fibrosis Foundation and the registry. And I think this has been a huge resource for clinicians, for researchers, for trainees, in terms of all the data that the pulmonary registry, the patient registry provides. And then lastly, I really want to thank the patients who are generous with their time and their effort and participated in the PFF patient registry. Thank you. Okay, a couple of great talks, which leads into mine, which is basically strategies to overcome some of these barriers and improve care delivery. I'm Ryan Bente. I come up from Indiana University and I have nothing to disclose. And the objectives are really twofold. I think one is to talk about the Pulmonary Fibrosis Foundation, how we can leverage those resources to extend the reach to care for more people, particularly those with reduced access. And the second part is how we can use technology to improve care delivery, not just telehealth, but create a better telehealth experience that also includes remote patient monitoring. Would it be feasible? Would it be acceptable in rural patients? So the typical course for diagnosis of ILD is long and winding. And I think, as we've alluded to, due to the complexity of ILDs, how uncommon they are, how difficult they are to diagnose and reduced access to self-advanced care, this is very long and even longer for rural patients. So really what we want to do is kind of improve this time to diagnosis. When we asked patients as part of a qualitative study that I was doing about their experiences with local health care, some of the reoccurring themes were, look, small town's great for a lot of things, but health care, absolutely not one of them. Even those that have access to local health care felt, in my area, people don't know about it, referring to ILD or pulmonary fibrosis. So even those that have local health care, even local pulmonology, don't feel like they have care with people that understands kind of what they have and what they're going through. And this is highlighted by some of the work that's already been talked about. This is why probably they show to subspecialty clinics later with worse disease and in fact, they're less likely to be on therapies for their lung disease. So we need to figure out how we can, you know, improve this delivery of care, how we can bring everybody together to have everybody, not just rural patients, but anybody with reduced access have access to high levels of care and comprehensive care. So one modality for this is kind of this hub and spoke model for addressing needs. And a lot of this would be to have certain ILD hubs. These would be places that have subspecialty care and infrastructure to provide the high-level care that's needed for ILDs. And this is part of the mission of the PFF. The PFF is large. You know, their mission really is to propel the field of pulmonary fibrosis forward, improve and optimize diagnosis, provide patient-centered care, improve research and education for patients. And really the feeling is that every patient should have access to this. You can see on this map that there are a lot of centers, but there's also a lot of ILD deserts, I'll call them, or areas of even states that have PFF care centers that don't have close access. And there's certain states that have no care center networks. The PFF has expanded really well over time to kind of meet some of these needs. And I think most recently it's starting to kind of use this hub and spoke model, which I think is going to be very important. So we need to support the PFF, support the care center networks, because really the goal is to kind of bring the PFF together with the pulmonary fibrosis community in addition to these care center networks. So the care centers are, you know, sites that we've mentioned that have to have access to a pulmonologist with specialty in ILD, radiologists with specialty in ILD, you know, pathology, multidisciplinary discussions, have access to, you know, transplant either at the site or a way to get patients to transplant. There's a lot of interested sites that are in the community and other places that have interest in being a part of the network or extending care, but maybe don't have those resources to receive the designation. So the new plan is really to have clinical associate sites and these clinical associate sites would be linked up with the care center network site. So they'd be linked up with the hub so that there's good communication between the ILD hubs, which are the care center networks and these associate sites, which are places that could benefit a lot from having that relationship to streamline care delivery, possibly improve access to rural patients, to clinical trials and other treatments, lung transplant, antifibrotics, just to have that open dialogue with somebody who has more experience with it. I think that'll be beneficial in a lot of ways, just to educate, you know, community hospitals, whether it's pulmonologists, internal medicine doctors, and have that working relationship to further extend the reach without having the care center network sites take on all of the burden of having more patients come to them. So if you're curious about the PFF, the care center network criteria, the associate center criteria, you can follow this link. You can also go to pulmonaryfibrosis.org, but I think this is a nice network and a nice system that's set up to, you know, fulfill this mission of, you know, delivering care to everybody that has PF and ILD. So I think that's mission one is to support the PFF. The second part is addressing all these barriers that we talked about today. And this again, direct quotes, but reoccurring themes for our rural patients that in the study we did. Distance, everybody's traveling over 100 miles, sometimes 200 miles by car to come to clinic. Others, it's not necessarily the distance, but it's the cost, and not just the monetary cost of gas, but also the cost of, you know, family members. A lot of ILD patients are older, so having to have family members take off work, to spend the whole day with them, driving to clinic, getting their testing, then going back home, traveling with oxygen. So there's a lot of cost that goes beyond just time and distance. So what we need to do is leverage technology. I think technology is kind of, it's going to happen. We need to embrace it and we need to find ways to use it to our advantage to extend the reach. There are a lot of merits to home monitoring for a lot of diseases, including ILD. I think it can increase our access to subspecialty care. It can provide, you know, a more timely diagnosis, maybe enhance people's ability to participate in clinical trials. You can identify flare-ups, progression quicker, so maybe they get put on treatments earlier. So there's a lot of merits to this. And this is highlighted, you know, in a paper in The Lancet that it can be used at all phases of their ILD care. It can be used kind of pre-diagnostic. It can be used on follow-up. You can make a lot of decisions regarding treatment based on what's happening with lung function decline. So if we are using remote spirometry, we can make clinical decisions without physically seeing somebody, you know, in the clinic or having them go to our PFT labs. I think there's a lot of advantages for non-pharmacological therapy with technology, which would include pulmonary rehab. As we highlighted earlier, a lot of rural patients don't have access to pulmonary rehab. So could there be web-based platforms to, you know, enhance pulmonary rehab that can be done in the home? End-of-life care is another huge area in ILD that has high morbidity and mortality. You know, can we use technology in this realm to address some of those needs? So we did a small feasibility study at Indiana trying to assess, like, rural patients. I grew up in a rural community. You know, would they be receptive to this? You know, because I think rural patients may not have good quality internet where they're at. They may not like using phones or apps or any of that stuff. So, you know, to decide if we can use this as an intervention, we didn't know whether or not it would be received. So we just included 20 patients that were all rural in the study, and we wanted to see if it was acceptable and feasible to remotely monitor patients with ILD using a web-based platform. So we partnered with Patient Empower, which is a digital healthcare company, and they have a variety of applications that they can use to monitor patients remotely. The way that we utilized their system was with Bluetooth-enabled spirometers that were linked to a web platform. And the way that this, this is an example of what it would look like on the phone of a patient who had this. You'd have your Bluetooth-enabled spirometer. It would link directly with the app. You can click on the Add Spirometry button. Boom. It will direct them to perform a spirometry measure. And then also there were patient-reported outcome measure questionnaires that can be embedded into the application. So there's a lot of utility in this platform. It can also measure air quality based on your GPS location. And how does it look? So this is how it looks. This is an example for a patient. And both, there's hubs on both sides of it. So there's a patient hub where you can actually track your own lung function over time, 7 days, 30 days, 3 months, and see what's happening. On the provider side or researcher side, similarly, you can track lung function over whatever period of time that you need. You can set alerts that if it's dropped off by a certain amount that you'll get a notification. You can also set alerts to remind people to do perform maneuvers. And we had asked people to do twice weekly spirometry as part of our study. We arbitrarily picked that number just to see, you know, could they repeatedly, you know, do spirometry maneuvers. And we found that the adherence data was okay. About half of patients were able to do twice weekly. I would say 80 to 90% of patients did it at least once a week. There were a couple that started out strong and then just stopped using it. But the average number of maneuvers per week was just over two. We then did surveys at the end just to kind of talk through patient experiences with telehealth. And most telehealth things were favorable to roll patients with ILD. They felt it provides adequate health care. They felt that it was acceptable as a modality to receive health care and particularly when stable. So a lot of people on these interviews that we did at the end of the study, the reoccurring theme was a lot of people want a hybrid model. They want to be able to be monitored remotely when everything's stable, everything's good. I don't need to drive there and see them, but have the option to be seen in person, you know, if when needed. We also asked them questions about their experiences with the web-based platform and the majority that responded felt that this barometer was easy to use, the app was easy to use, and that it gave them some control over their disease. Not necessarily control when we asked them a little bit more about that, but just awareness of their lung disease. So it felt like it did kind of empower them to know what's happening with their lung disease over time. So I think it was very well received and just some quotes from people about their experiences with it was generally positive. It keeps the doctors informed, it keeps them informed, you know, so those are the big positives. Some of the weaknesses, which I'll talk about on the next slide, is, you know, one person, it was one person that didn't, his home internet was unreliable. So he would periodically have to go to the local library or McDonald's to perform a maneuver. So that may be a problem with doing this in some rural settings and further, like, make disparities worse because they won't have even access to be able to be monitored at home. Others, and I suspected some of this with rural patients in particular, is they like to be seen face-to-face sometimes. They like, you know, having somebody listen to their lungs. So I think that, you know, having that personal connection still needs to be there, but in general, it was very positive in their experiences with this web platform. So then the next question is, okay, who's going to pay for it, right, outside of research? So this is kind of the payment, you know, scheme for it can be reimbursed and, you know, you can be reimbursed for setup, monitoring, interactive communication, as well as interpretation of the data. They just came out with this new, you know, repayment scheme and the difficulty, it was the 16-day rule remains in place. And what that means is an individual has to transmit some piece of data 16 days out of the month for you to be reimbursed for it. So they would have to do 16 spirometric measures per month, not just measure 16 days of spirometry, but it could be anything else. You could do a Bluetooth-enabled pulse oximeter. You could have a scale that they use at home that is connected to a medical whatever they step on each day. So as long as there's 16 pieces of data coming in, whether it's spirometry, pulse ox, any combination of those, you can be reimbursed for that. The setup is reimbursed, you know, the time spent by either a healthcare provider, a physician, or even support staff under the supervision of healthcare provider can be billed for, you know, introducing somebody to the device, having them link it up to their phone, make sure that they're able to perform maneuvers so you can actually be reimbursed for that. There is reimbursement that can be recurring billing. So this, as long as they're doing 16 days out of the 30, you can have it set up as a recurring bill or code that you submit. But the key here is that it has to be the data that gets collected has to be linked to a medical device and automatically transmitted. So they can't just write their weight down every day at home or what their pulse ox was on the pulse oximeter they bought at CVS on a piece of paper. It has to be directly transmitted for this to happen. So again, 16 days. So these are just kind of the barriers to doing things like this. The others is kind of interactive communication. So can you look at somebody's data over the last month, talk to them on the phone about it and bill for it? You can. It has to be separate from a telehealth visit. So you can, the time spent doing this has to be separate from the chronic care management that you would do during a routine telehealth visit. So it has to be 20 minutes or more, but you can again, you know, bill for this. I believe nurse practitioners and maybe even some nursing staff can communicate this and bill for it as well. The interpretation of the data is a little more strict. This has to be done by a physician and this is time spent, you know, reviewing the data over time in the platform. So just some notes on, you know, the reimbursement for this. I think that, you know, you can be reimbursed. I think it's tricky. It requires a lot of work on both ends to be reimbursed for it. You need to get patient consent on an annual basis for this. Some of these codes can be billed, you know, monthly. So I think there's going to be ways to, you know, fund using remote patient monitoring, but that kind of leads into the summary, you know, at the bottom is we need to lobby like to make this easier. We need to have a better way to do this without having to have somebody do spirometry 16 days out of a calendar month. Nobody's going to do that, right? But so if we're going to utilize this, we need to make it more feasible for the healthcare system to do it. The other summary point is really that the Pulmonary Fibrosis Foundation is going to be, you know, a big part of how we expand our care delivery. So I wanted to thank everybody for being here today. We're happy to take questions about any of the talks. Thank you.

rural patients

interstitial lung disease

accessing care

specialist care

Pulmonary Fibrosis Foundation

remote patient monitoring

disease severity

technology