Dr. Chloe Slocum, Assistant Professor of Physical Medicine of Harvard Medical School, presents at the Johns Hopkins Department of PM&R’s Grand Rounds on August 16, 2022.
Can everyone see my signs? Yes, great, thank you. Um So just some disclosures. I do serve as a grant reviewer for the Nielsen Foundation. Um and I receive partial grant support um from um the N H the dod um and several foundations. Um Today, I'm hoping that um by the end of my presentation, we'll be able to describe three core domains of quality measurement as they relate to spinal cord injury care. We'll be talking about the diabetes model and looking at some structure process and outcome measures um comparing contrast coordinated S D I care with one to other complex medical care models. Um And specifically, um I think it's, it's relevant to look at transplant pop populations, um diabetes management as well as um chronic kidney disease or dialysis populations when we look at um chronic and complex care models of care. Um And then at the end, I'm hoping we'll be able to reflect on 2 to 3 challenges and opportunities facing spinal cord injury providers and systems. Um some of these overlap, but I think they represent really um important ways to build on the phenomenal work um that um historically has been done within spinal cord injury and um is also still being done today. Um And like a sampling of these I would say includes things like value based care models um looking at care continuity across settings and then really measuring health equity and value um and how we can help um promote health equity by better measurement of value. Ok. Um So when we talk about quality measurement, um quality can seem like a really abstract concept. I know that there's phenomenal work being done at the Hopkins System. Um with I think that the Armstrong Institute um and uh folks at Hopkins um have done really amazing quality work in PM and R. Um But to folks who are not as involved in quality every day, it can seem like I said a little bit abstract. Um And so um when we think about this, um we often reference back to the really touched on report the crossing the quality chasm um done by the Institute of Medicine now, the National Academies um in 2001. Um and that demonstrated that we want to have care that is safe or avoid harm. Um We want care to be effective. So we wanna avoid under use and misuse um and provide services that are based on um evidence um and refrain from providing services that really won't benefit anyone. Um We wanna provide care that's patient centered, that is um respectful and responsive to individual patient preferences, needs and values and we want to have timely care um by reducing waits and sometimes harmful delays. Um We provide efficient care um and avoid waste um of really a lot of things but mainly equipment supplies, ideas and energy. Um So not just waste of, of material um goods but also uh waste of uh providers time. Um And lastly we want, um but certainly not least we want care that is equitable. So providing care that does not vary in quality because of personal characteristics, like gender, race, ethnicity, geographic location and socioeconomic status. Um And really, I think that's, that's what we think of as aspirational quality care. Um When we talk about measuring quality. Um oh and also this, the quality of when I looked at quality of care generally, you know, as we can see, there's, there's a lot of interest in this but it dates back, you know, a long time ago, but especially um in more recent years. And I would say definitely within the past two decades since the I O M report, um there's been um exponentially more interest in quality of care. When we talk about measuring quality of care, we tend to think of three different domains and this is based on uh what's called the diabetes model. Um and things that we measure that when we look at the quality of care that a system provides or that a clinic provides, um that these are, these are bigger things that are sort of outside of an individual provider's performance. But um when we look at quality and we try to measure it across a system or across a, a clinic or across the institution, uh we look at the physical structure. Um So things like um the actual physical building um are things accessible, um you know, the capacity of the building to take care of patients. Um and the, the staffing of that building, um things like policies and procedures, um information technology leadership, um the organizational culture and something we talk a lot about um at, at our, we have center is safety culture. Um So safety culture, just culture um and promoting safety culture among everyone who works there. Um especially front line staff. Um and then um not just the numbers of staffing but also their expertise, their training, their certification, um and any sort of staffing ratios, these are all thought to be part of the, the structure um and how we can measure structural components of quality. Next, we think about uh process, the things that are processes that are uh not clearly defined as structural characteristics, but are a and not clearly defined as outcomes but are things that are thought to be related to the provision of high quality care. Um So, uh a classic example, um or several classic examples would be things like hand washing. Um So, hand washing is, is not necessarily an outcome of care. Um and it's not really part of the, the structure of an institution organization. Um although it does relate to things like, um you know, culture and norms. Um but it is something that is, you know, associated with um positive outcomes and thought to be associated with, you know, receiving high quality care. Um Another thing that gets measured, that's um a sort of a classic um uh process measure is our um things like employee vaccination um and um immunizations among health care workers, for instance, um and measuring that um and the thought that that um by virtue of uh protecting um for instance, immunocompromised patients um is something that again, is not an outcome nor really a structural metric, but is something that is thought to be associated with higher quality care. Um And in general, you can get sort of conceptual and technical and think about um the process is being defined as the way that policies are translated into practice. Um for instance, um technical processes that relate to how care is delivered um and interpersonal processes or the manner in which care is delivered. Um And so the um this may be something related to, for instance, um uh responsiveness, uh responsiveness to patient questions, um uh kindliness of um response to um you know, we can think of call bells patient messages, like all these things that we could, we could measure as being part of a process um that are not necessarily an outcome of the car itself. Um And then we get to outcomes which is usually, um usually, I think the the media things and also more sort of more controversial things that live in this bucket. Um where, you know, really it can encompass any effects of health care on patients or specific populations. So these can be changes to health status, changes to behaviors um around health um changes to patient knowledge, patient experience, um cost and reliability and things like health related quality of life. Um And so we have very big, again, blunt measures of outcomes. So things like um mortality, um surgical complications. Um and then we have things that are a little bit, I would argue uh both more granular um and, and sometimes harder to measure. Um But yet these things can be sometimes more meaningful. Um So we think of um for instance, disability ratings or we think of um uh functional scoring. Um and also things like measures of community participation um that we look at sometimes in, for instance, the spinal pressure model systems. Um these are things that are um outcomes. Um And um then we, we'll look at later, a little bit later, one of the challenges and opportunities, but how, how, how are we measuring health care costs? Um And I think this is one of the most controversial um outcomes but um that is where sort of that would live within this, this quality measurement spectrum. OK. Um, 1/4 bucket would be balancing measures. So, uh, the National Health System in the UK often looks at this one as sort of the, the fourth, uh the fourth bucket. Um, and they sort of have the diabetes plus model. Um, but they, they look at balancing measures and, and this is a, I think a, a good measure to think about. Um, and one that serves us well when we're thinking about, especially some of our complex rehab populations. But this asks essentially whether there is a measure of anything that we should be looking at that represents an unintended consequence. Um Because if you, um, you know, if you, there, there's a lot of pithy saying, but if you, um if you're, if you're, if you can't measure it, you can't pay attention to it very well. Um And so, keeping in mind that as we're measuring all these things that we have a lot of benchmarks and we're very concentrating on, um, you know, these structure process and outcome measures that we've, that we've decided are important in any Q I initiative. Then, um, we need to be looking at balancing measures too as we're going along on any initiative or any improvement project to make sure that we're not having um unintended consequences, um that we would really rather avoid even if everything else seems like it's looking rosy. Um So I thought, you know, in terms of spinal cord injury and spinal cord injury models of care. Um Structure questions we could ask about structure would be things like is the facility accessible for people with S C I um or mobility impairment? Um Does the team have spinal cord injury specialists would be a question or can or can they access spinal cord injury specialists? Um for process um we can think of does the team provide care based on up to date clinical guidelines? Um I forgot to mention it in process, but you know, part of process would be also, you know, use of guideline guidelines for care, you know, something that's not necessarily structural but not necessarily an outcome but is associated with higher quality care. So, adherence to guidelines or use of guidelines, um and then our policies periodically reviewed to incorporate new evidence and findings would be a process measure as well for outcomes. Um if I were a spinal cord injury patient and I were looking at, um you know, be at a primary care practice, be at a hospital, you know, I would ask, you know, whether spinal cord injury patients have outcomes that are comparable to other facilities with the same level or severity of injury. Um And then are those with spinal cord injury able to return to community education or employment after their injury? This is a, a big one that tends to be looked at um in um registry based studies within the, the UK and Europe. And then also um in the spin spinal cord injury model systems um for balancing measures, like I said, um one thing about, are there any unintended consequences of existing quality initiatives for spinal cord injury patients? Um And I think this is important to think about when we're thinking specifically about spinal cord injury um care models, but also things that are broad quality measures. Um So for instance, I know that um some colleagues at the um America Spinal Injury Association um have been working on looking at um ways to advocate for um you know, changes or um modifications to some of the quality measures based on um urinary urinary tract management. Um And thinking about um what does a a catheter associated urinary tract infection mean for a spinal cord injury patient um who is in the acute um period after their initial injury um versus what does it mean to a general geriatrics population? Um And so, thinking about, about um you know, if we incentivize people to completely eliminate catheter associated U T I S, um are there any adverse consequences? Um for instance, in terms of uh renal health or in terms of autonomic dyslexia, um if we're trying to totally avoid using catheters in the acute setting, um versus uh maybe a more a more nuanced algorithm based um management strategy. So we think about structure, I'm just gonna go through some um some examples here, but um for spinal cord model systems um and um really models of care, not model systems. Um We think of structure, we can think of things like for instance, the VA S uh hub and spoke model um as being uh a structural component that we could measure um to look at and assess quality in spinal cord injury models of care, we can think about spinal cord injury model systems. Um And in the UK, we can think about the spinal cord injury centers of care, which is, is something that is sort of similar but exists um in the, the UK and also in Ireland. Um we can think of great institutions here in the US, like um the Kennedy Krieger Institute. Um And so we can think of um things that are available in those institutions and also um as part of the programs uh within those institutions and their collaborations across um clinical affiliates. Um We can also think about things um like the um the Christopher Nana Re Foundation and United Spinal um and um resources that exist that are um things that spinal cordry models of care may draw on that may be national resources. Um And it can be used by um both patients um and our consumers um and um clinicians as well. Um And then we can think on a architectural level, things that are local, so not national resources, but maybe local community resources like the availability of, of gyms, the availability of accessible fitness facilities and the availability of adaptive sports programs. Um And again, on a very granular level, we can just think about is something um accessible. Um So, you know, is if, if I am referring somebody from our spinal surgery clinic, for instance, for a mammogram, I have to know uh where the accessible facilities are and I have to know the appropriate place to refer the patient. Um Otherwise they may go and they may not actually be able to get the test. Um So thinking about how to organize care um and what the the structural resources are um can help um both with quality measurement for a system. And then also um for me as a clinician to, to do my job and to, to help um have the highest likelihood of the patient getting that preventive care um for process measures. Um We have a lot of process um process measures and really tools in our toolkit as spinal cord entry providers. Um We have process measures for instance, um within the the spinal cord model systems. Um And um you, there's a lot of acute care systems that will use something like this. But the um you know, whether somebody comes and performs an Asia exam or performs a, a neurologic exam within a timely fashion initially after injury um is something that would be a process measure of quality care in spinal cord models of care. Um The va um just going back to the va that's um I did my fellowship as part of the va um but they have, they have a whole directive, it's sort of written into um policy um in terms of um the systems of care and what the system should be. Um And so this is um not only touches upon um structural um issues like they have a whole um section on staffing uh for spinal cordry units within the va, but this also touches upon um process measures. So things like um annually, you know, what, what would be optimal for somebody to get in terms of their neurologic screening. So, um this is where we get, you know, you should have an annual kidney ultrasound. Um and you should have a, an annual measurement of um you know, both upper and lower tract function. So we need to get a, a U A and a creatine um and un on you every year um to make sure that we're monitoring your upper and lower tract. And so this would be a, a process measure. Um We also have guidelines. So we have uh a really a wonderful suite of, of guidelines that exists um for spinal cord in providers and, and for other providers that are uh public and free of use. Um that thanks to the, the paralyzed veterans of America, um but these really run the gamut from um resources on early management and early acute management um of adults with spinal cord injury to um things that are um you know, related to longer term outcomes and um prog functional prognostication. Um More recently, um I wanted to share this a resource, the um American College of Surgeons um who um looked at trauma systems of care and what and what resources are required for trauma systems of care that also similar to the va directive touch upon these, these structural um and process components put out a best practice guideline for spine injury. Um And this also has some, some great information on it as well that I think it probably has a little bit more of a surgical focus since it's put together by the surgeons. Um But um thankfully, it also includes a section uh on rehab. Um and um really what aspirational trauma system should have in terms of um spinal cord injury rehab. Um for folks who sustain spinal injuries, for outcomes, there's a lot of outcomes we look at um in spinal cord injury. But um we do look at look at the Asia score and sort of change in the Asia score as as an outcome, not just performance of the exam, but um the injury severity. Um and um whether folks for instance, return to walking um and return to um independent um functional status. Um This is a wonderful uh review that came out a few years ago, but um looked really at um both data from the UK the US. Um and then the the um various European databases um in terms of looking at prognostic uh prognostic factors for walking after a spinal cord injury. Um we also have more granular level of injury. This is a, a wonderful reference again from the, the PB A but this actually will look at and sort of give you uh different estimates on to in terms of um home care and uh you know, on the the basis of level of injury, um what your estimate would be um for your basic A B L tasks and then um your home care and, and gives um what I think is really wonderful about this guide is that it gives you a, a hypothetical target. Um And then based on the research, what the actual range was. Um So if somebody, for instance, needed um six hours of care per day, that was the projected um you know, theoretical uh target. Um but in reality, you know, maybe some people needed um four or five hours of care a day and some people actually needed eight. And so they'll give you actually the, the inter quartile range um by level of injury. Um And so this is uh I think unique um to spinal cord injury and models of care and that we do focus on things that are very important for community reintegration and community participation. Um And we look at these in both a context specific and then sort of a global lens. Um another outcome that I think um is important to consider um is are things like secondary health conditions. Um So spinal cord injury is a catastrophic injury that happens initially. Um And then, you know, folks are living with it for hopefully a long time afterwards. Um but in that time, we manage a lot of different conditions. So my work is an outpatient spinal surgery, physiatrist. This is our bread and butter in terms of um managing um very prevalent secondary health conditions. Um and trying hopefully to um avoid things like, you know, for instance, recurrent urinary tract infections, pressure sores, um and complications from autonomic dyslexia. Um and we do have a sort of a rich epidemiologic tradition within the spinal cringy of um looking at um trends in mortality. Um and um trying to, I think, reduce um excess mortality um and have made strides in that within the past several decades. Um but still struggle within um sort of the, the first year after injury, dealing with some of the acute complications. Um since folks are at higher risk, for instance, of, of things like pe during that initial period. So I want to talk a little bit about um complex and chronic care models of care. Um This really came to the fore um in the early two thousands um with Bodenheimer article on improving primary care for patients with chronic illness. Um and this sort of uh took the I think sort of the the public health field and, and some clinical practices by storm in terms of thinking about how do we get away from what you call a tyranny of the urgent um to a really planning uh deliberate for people who are living with chronic illness. Um So they actually, this article starts with a, a case presentation where um Mr Sugarman who's a 64 year old patient with diabetes um comes in for a 15 minute primary care visit. Um And um essentially 12 minutes of it is used to deal with acute knee pain and some gastroesophageal reflux. And then there's three minutes, a full three minutes left to deal with diabetes or this, this uh chronic condition um that Mr Sugarman is living with um that, you know, really gets um uh short shift here. Um And so this talks about sort of a way to re envision that um and to think about um visits that are dealing with acute conditions as, as being sort of their own set of visits. And then um really uh a really rich multidisciplinary way of approaching um chronic conditions like diabetes with um other members of the team. So, for instance, um nursing nutrition, podia, dietary um to avoid these end organ complications. Um and also having um sort of specified scheduled visits that focus on a longer term non acute conditions um to help people live well. Um and really collaborating with the community to provide those OK. Um And this has morphed into several things. So this is a more recent um schematic from U CS F in, in terms of thinking about the patient centered medical home, um which was a, a uh had sort of many um acolytes in the past few years, but really thinking of something that is more um multidisciplinary even co located. So when we talk about integrated integrated behavioral health care, we're thinking about actually integrating behavioral health, psychiatrists, psychologists and behavioral health care, social workers um within a primary care practice. Um instead of um the traditional maybe a primary care provider acting as a gateway. Um And then referring out to a series of folks that may not actually be located together or actually even really talking together um synchronously um or um sharing ideas about a patient, the six, the six components um that um Bodenheimer thought should belong to the, the um the chronic care model were um here but essentially things like community resources. So are, are there um I apologize for, for some noise but um and so things like community resources. Um and whether um there are actually, for instance, fitness centers in the community, um things like health care organization. So is the health care organization, um does the, the organization itself have priorities uh like community health and like getting people back into the community? Um or is that just sort of an aside that is not a primary goal? Um self management support. So are there resources to help self manage and to help patients or consumers learn new things or learn to manage their situation better? So instance, you know, one thing I think of is are there wheelchair skills workshops that are available to community members or are they sort of only offered in informal therapy sessions or um you know, are there even therapy sessions that focus on that community reintegration piece um versus um things that are sort of more within the hospital itself and not focused as necessarily on that, that community um integration piece. Um clinical information systems, this may seem quaint now since we sort of all live and breathe and sleep in the E M R. Um But, you know, in 2002, this was, you know, I think uh thought to be sort of more, more provocative um in terms of thinking about um recording things electronically um and um being able to track them over time within an electronic medical record. Again, things that we um I think largely take for granted, but I think we're still fine tuning ways for instance to capture the, the Asia exam and the electronical medical record. I think when I talk to folks from across the country, you know, everybody is doing this a little bit differently. Some people have flow sheets, some people just have a, you know, a text, some people are capturing it um in a, a photo with a PDF. Um And so, um we, we still do these things, but I think our, our level of doing them is probably more advanced than it was in 2002. Certainly. Um Delivery system or sorry decision support. Um So again, are people using clinical practice guidelines? Are there guidelines available um within S C I certainly there are. Um but we can think of maybe other chronic conditions where they may not be as advanced. Um And then delivery system design. I was talking about um what does the team look like taking care of the patient? Um Is it different for inpatient and outpatient environments? Um Probably so. Um but does that, does it differ, for instance, across institutions? Um Yes. Um and is there, are there um are there consequences to those differences or um are there efficiencies that are offered within certain context? Um So we'll talk a little bit about um models of care for both diabetes and chronic kidney disease. Um So for chronic kidney disease, um Nickel and colleagues looked at over two decades of, I'm gonna go get my um headset. Hang on just one second. I'm gonna be myself and it will come right back in. Can you guys hear me? Yes. Awesome. Thank you. All right, sorry about that. Um So we're talking a little bit about models of care for chronic kidney disease and also uh diabetes management, which are two um sort of very prevalent um chronic diseases that we see a lot. And we see also um these tend to be the focus of big payment models. Uh for instance, for um Centers for Medicare and Medicaid services. Um because they, they are so prevalent. Um So Nichol and colleagues did a review where they looked at over two decades of publications on models of care for chronic kidney disease. Um and Delvalle, um and mcdonald looked at um sort of uh 1.5 decades worth of um publications looking at chronic care management, uh services and models for diabetes care. Um And they found for chronic kidney disease with that there tended to be four main types of care models across um the two decades of publications. Um and these included nurse led team models, multidisciplinary specialist teams, um pharmacist led models and then, um essentially um like self management models where people were empowered and given a lot of education, but ultimately, um in charge of, of managing um their own um their own uh chronic kidney disease in terms of their um their medication management and then also looking at outcomes. Um they actually found, and this is interesting and I think humbling as a physician, but they found that nurse led and pharmacist led teams actually did the best with prescribing drugs that were relevant to chronic kidney disease. Um And um I think maybe this can be attributed, I think as physicians we tend to um I think, have a, um, a good app for the exceptions. Um, and so, uh, we may be sort of looking for the exceptions. Um, and, uh, it may be the case that, um, uh, there's a lot of pharmacist teams are that are following the guidelines because they're, they're, you know, stricter about the guidelines maybe. Um, but they did find that there were a lot of hetero studies and there was frequent high risk of bias that was noted. Um This, I think um it's understandable because it's hard to blind, uh a care model. Um and it's hard to uh perform a uh a randomized clinical trial on a care model um with appropriate blinding. And so, um these studies are um limited by the fact that um there is a lot of bias that is part of the um part of the analysis. Um and in some ways, um uh it's hard to get around that by designing uh designing the bias out of it. Um One thing I think that is the strength of ours in spinal cord injury. Um But we can see here is that uh there's evidence, um there are limited evidence of long term improvements um for renal cardiovascular mortality end points um in these of the studies of the chronic kidney disease bottles, um because there's only short term follow up. Um And so this is something that we struggle with in um spinal cord injury. Sometimes in that we do get a lot of information up front in the acute care for patients. Um but our registries both in the US and in the EU and the UK, I think our strengths because they do allow us to follow a smaller subset of values longer term. Um for instance, looking at five year or 10 year, follow up, you know, 15 years follow up um in the spinal cord systems. Um And um I think especially um colleagues at um U A B have been looking at mortality for a long time and have used the registries um to um a good purpose with that um for chronic diabetes management. Um The chronic care model has been used across us primary care settings. Um I think there are differences of opinion on how valuable the findings are. There are findings that it has helped with some outcomes but um the scalability um and uh the, for instance, um uh the sustainability of those models um is debated because at different time points, um reimbursement strategies have not always aligned with um creating or providing uh a chronic care model within uh for instance, a a smaller practice setting. Um The the others, uh and colleagues note that um there have been improvements in electronic medical record capabilities um And in delivery system Rees redesigned that align with um reimbursement policy. Um for instance, offering um things like uh nutritional consults um and to um individuals with diabetes as part of um their um Medicare benefits. Um And then um they did note that fewer strategies overall address things like um community resources and the capture of process measures. Um And as we said, at the beginning process measures are kind of like the middle child um of quality measurement where um they, they get captured um if they're part of a, a payment program. Um but they're, they're not always what people are looking at as sort of the, the end product of care. Um And so sometimes things like, um you know, a patient's attitude about something um and measuring that would may not always get captured. Um And so, you know, something may have been very positive for patients, but if you're not capturing um that positive change, then it's not necessarily valued in the um or um looking at the sustainability of the um of the uh the initiative um and fewer strategies addressing community resources. Um This is something I think that um we do better at within spinal cord injury maybe because we have a smaller population with very focused needs. Um But this is something that gets there. They, there's a lot of talk about it and, and um you know, authors talk a big game about it when they're talking about chronic care models. But um how it's actually done um and the how that gets operationalized um for systems and providers and clinicians, I think still tends to be somewhat abstract um and so successful models of it um I think get described but then how to, to translate that successful model into another setting um is sometimes um a bit modest in terms of the, the explanation. Another important um set of, of caramels, I think it's important to consider are transplants. Um So the um the there is actually a fair amount of the transplant system within the US that is sort of uh mandated by statutory guidance. So what you have to have in place to have a um a certified um transplant program um and the, the types of things that you must have um in, in a process that I think is even more formalized than some of the trauma systems of care that we saw from the American College of Surgeons who, who, you know, historically have um opined about uh what is required and what should be required from uh transplant centers of care. Um And so this, if it was a, a great um review, looking at um practical recommendations and care models, specifically looking at management of modifiable risks in both kidney and liver transplant recipients um from the commit group or the consensus on managing modifiable risk and transplantation group, um which tend to be a um you know, AAA group of, of uh physicians looking at transplant medicine. Um And as I said, a big thing that they look at it is how to, how to minimize the risks of the non adherent transplant patient. Right. So somebody has had a, a kidney or a liver transplant. Um, and you would really like to avoid, um, all of the sort of, um, the, you know, things like graft rejection. Um, and you want to make sure that they're, they're taking their, their medications, um, and they're, um, you know, able to do that reliably so that, um, they are at less risk of having, uh, a graft rejection. Um, what they've noted in terms of the um the psycho, they perform a lot of psychological screening, um pretransplant. Um and they look at uh how to identify early on non aer transplant recipients. Um And they also look at multilevel risk factors for non adherent, um including things like socio demographic factors, uh patient related factors, um treatment related and condition related factors. So, for socio demographic factors, we might think of um somebody who is socially isolated does not have it as robust of a support system. Um patient related factors. So things might be related to comorbidity. So, um depression, um low self efficacy, um treatment related condition related factors. So things like, um you know, the, the just the size of the pill, the fact that it may taste bad. Um the fact that it may have, you know, bad side effects, um and you know, may, um, you know, you make them for instance, more depressed. Um and then they like health care teams and systems factors. So, um do they have someone who is well versed in community resources? Do they have um a system assistance factors could be things related even to um issues with transportation and accessibility of the clinic? Um And they won't look at strategies for managing non adherence um within some of these care models. Um And what I found fascinating about this was they um they remarked that education on the value of adherence to immunosuppressive medications for transom populations um is important, but the effect of providing more education is actually very modest um in terms of how effective it is at getting people to be adherent. Um It's generally thought not to be the most effective modality actually to, to help promote adherence. Um the educational cognitive interventions and things that are, are medical interventions tend to actually be more effective. So these can be things like, um you know, uh trying to, trying to explore um you know, why somebody um may be averse um trying to provide a psychological intervention, trying to improve their self efficacy. Um And, and even um things like trying to figure out whether, you know, is it, is it because they're too busy during the day? Are they a caregiver? Um could they be more effective if we change their medication regimen to something that they only needed to take, you know, once a day versus multiple times a day? Um And so, really thinking about that in terms of the, the patient specific context um and the the community context of the patient. OK. So I'll talk a little bit about um components of coordinated spinal cord injury care next. And hopefully we'll be able to compare them um to um some of the other complex care models that I just mentioned. Um when we think of coordinated S C I care, um hopefully, we're thinking about uh coordinates specialty in primary care that is aiming to deliver evidence based care to patients. Um with a holistic perspective on health that prioritizes long-term function and community participation. Um We give patient initiated visits to address address acute issues such as specificity and pain symptoms, equipment issues. Um and then also scheduled visits that focus on anticipated issues such as bone health immunizations um and things like um diet and also aging. Um So again, I think the uh I I told you the, the va wrote a whole book on to spinal cord injury systems of care. Um And this, I think it if um if you worked in the va, um this is uh very um very reflective of how the va deals with care terms if there's an annual visit and there's sort of an annual um clinic visit that's quite comprehensive. Um But when you think of other bottles of care, even in primary care, sort of an annual Wellness visit, um you can see the parallels here um in terms of thinking about a, a really a patient initiative is for a new problem or a, a new issue that has come up and then things that are scheduled that really focus on um things like anticipatory guidance and longer term concerns. Um We think according to S C I care, we think about sort of our team and who our team includes. And um I, I always get asked by the residents. Um you know, like how long did it take you to develop your network? Because, you know, well, um I remember starting as a new attending and I, I don't think I knew as many specialists. Um and I had a great peer mentor and it was like, you know, I would go to him and I would say, hey, you know, hey John, you know, who, who do you rely on if you need to work with an orthopedist who is familiar with heterotopic ossification, right? Um And um you know, it, it obviously it takes um it takes practice and it just takes time and the accumulation of, of work um to develop those networks. But um when we're thinking about coordinated S D I care, we really are thinking about sort of a big umbrella of um folks who come together to collaborate on some of the, the complicated issues we see. Um And so these can be specialties such as PM and R, of course, um But also things like primary care urology um and in primary care I want to also include um pediatrics for pediatric patients. Um also endocrinology for bone health, infectious disease, pulmonology, um gastroenterology, um psychiatry and psychology, um potentially obstetrics and gynecology for our, for our female patients, um things like sports medicine or orthopedic surgery, um and obviously neurosurgery. Um and then also other other um other disciplines including therapy disciplines and then books like nursing and, and nutrition. Um So, you know, as I say, it takes a village. Um and, and then, um I think again, last but not least, communication with community resources um is really important. So they may not be part of the, the clinical team necessarily that is based in clinic or based in the hospital. Um But they are really important to think about um to help achieve both patient well-being and promoted dependence. Um And these can look very different um based on where you're practicing if it's urban or if it's a rural. Um and um you know, how uh how folks will be going uh hopefully back home, but also sort of where, where home is, you know, is it, is it distant from you? Is it, is it rural? Um if you're at a tertiary academic center? Um But that, that collaboration being important for um coordinated S C I care and for having the best outcomes for um your panel patients wherever they may be coming from. OK. So we'll talk a little bit about different, different examples of um the components that we look at the chronic care model, but how these are um embodied within S C I models of care. Um And hopefully you'll, you'll get the um the impression by the end of this presentation that um S in S C I care, I really think we have doing chronic care, a chronic care model of care since before it was cool. Um And since really before it even had a name, um but we'll talk a little bit about the different components. So self management support. Um There are some really wonderful resources. Um the model systems Knowledge Translation Center. Um this uh uh safe wheelchair training and wheelchair maintenance. These are actually online courses that you can take um if you're a consumer, if you're a patient. Um or if you're just curious if you're a provider and you're, you're curious about this, you wanted to learn more. Um So our colleagues from um really multiple different model systems but um spearheaded by um the University of Pittsburgh, um I put together um infographics and like I said, uh several video courses um to help look at safe independent manual wheelchair transfers. So these are be self management support resources in terms of education and how patients or consumers um can uh um receive more resources or education um to help manage chronic conditions better. Um There's also peer resources through, for instance, like I said, United Spinal um and the National Paralysis resource center through the Christopher and Dana Reeve Foundation also has peer mentoring resources. Uh But these will also help with self management um clinical information systems. Um As I said, everyone does this a little bit differently based on their electronic medical record. But um this is a really interesting paper from um colleagues in Denmark and at Mount Sinai that looked at data collection or reporting for spinal cord injury. Um be Sorensen from Denmark is a real um evangelist for the International Spinal Cord Injury um data sets. Um and has had these actually built into the, the National Danish um Health System E M R. Um And so they're, you know, they're captured for spinal cord injury patients and mark. Um and then um again, here in the US, I'm outside, they've worked on um developing um specialized flow sheets um for um capturing the, the Asia the INS exam. Um and they were able to write this up. Um And then from more from a research perspective, um the National Spinal Model Systems Database um and how that information is captured um and really um curated. Um and how um now with uh the new N H um guidelines, um there is public access to deidentified data. Um And so they, I I think uh uh we're sort of witnessing a um huh more democracy in terms of some of the, the data sets that are available and that are collected with federal grants. Um but um this is important, I think to consider just because these systems do evolve over time as well. Um And um there, I know there's a great interest in making these um more responsive and easier uh for folks to use and, and for patients certainly to respond to and um submit data. Um uh for instance, through, through red cap surveys and through mobile apps and things like that. So I think um that will continue to develop and evolve um over time as, as clinical um uh I T systems evolve as well. Um Delivery system redesign I think is important to think about. Um But um these, I think there's a lot of, a lot of great examples of um uh clinical tools that can be used by team members depending on, you know, whether there's a, a nurse led team or there's a A PM and R lead team or a primary care led team that involves um you know, PM and R. Um I'm not as familiar with pharmacist led teams and kind of cord injury, but um I'm sure that um that would actually be interesting to think about um for our folks who are on, you know, maybe um different medication cocktails um and any sort of um C I plus diabetes or, you know, um you know, refractory A B is one I think um that might be um interesting to consider um having involvement, although I'm not sure about pharmacists. But um so um these I want to share are um came out of a collaboration between the University of Ottawa and the Ontario Neurotrauma Foundation. Um But these are, these are checklists in terms of um thinking about um how uh how to provide sort of good primary care um and check the boxes um so that you don't leave some of these chronic conditions unaddressed while you're also addressing acute conditions. Um The uh there are a lot of great international examples. I think of delivery system redesign, um which probably um uh speaks to uh fewer barriers in some cases um that I think uh us providers may encounter um as just part of health system delivery in those countries. But the uh Queensland's uh spinal cord um injury outreach team and the uh the injury service are a great example. Um So the outreach team or spot um is really a community based team of spinal cord injury providers um including um nursing, medical, occupational therapy, um uh physical therapy and social work professionals who also work with the inpatient services. Um So you can see that the delivery system really spans um these types of care from acute injury all the way out to um the the community. Um And they put out a lot of really um wonderful resources as well. There's a um a phenomenal guide for uh parents with spinal cord injury that the um spot team put out. That is um great if you are interested and you have a patient who has just had a baby. Um, and they're interested. Um There's a lot of uh wonderful tools um there um on um sort of adaptive parenting hacks um for spinal cord injury patients. Um and I'll go back to the va directive. Um So this is, um this is essentially the manual um for creating a spinal cord system of care. Um But sort of is memorialized in va directive 11 76. Um here, if you're interested, but um this, I think would be a um you know, maybe is overkill but um is uh is quite inclusive in terms of thinking about um all of the structural and process factors you would want to include um if you were designing a a spinal cord system from, from scratch, um decision support. Um So I think we have a lot of uh decision support tools in spinal cord injury. Um One might argue that some of them get confusing sometimes. Um But we have the uh we do have the in the model systems data set. Uh We also have the, the international standard rate data set um which again is used um and incorporated into some E M R s. Um And then we have uh fact set figures at a glance. So when we talk about decision support, um we often think of um provider feedback and so this is um also feedback in terms of how, how well your patients doing compared to sort of the national um fact set figures for health care organization. Um Again, we can think of different ways to organize and different goals uh that um rehab facilities have, I think within the US, there's a lot of facilities that are um governed by um the organization of the Earth regulations and providing three hours of care, five days a week. Um And um really providing that um and that is their goal. Um I don't think there's as much focus on, you know, how do we make those uh services and that expertise accessible on a broad level. Um But I will tell you about some really interesting work um including my colleagues at Hopkins. Um and um there, you know, are a couple of different examples but it tends to be less common in the, in the U si think of um for instance, the um the whammy or the in the Northwest um federally funded um program that um really started telehealth in the, in the 19 seventies um where your specialist can pick up a phone and, and reach somebody, for instance. Um If you're out of rural Alaska, you could um call a center in Seattle. Um And they could connect you with somebody at University of Washington who knew about spinal cord injuries um and making that expertise accessible um in terms of how to organize that and how it's funded um community resources Um There's a lot of amazing community resources. I wanna be mindful of time. Um But the, you know, facing disability um is great for kind of cord injury um for patients. Um Christopher De Reef Foundation I've mentioned um and things that are um again, uh uh uh Kenny Kreeger head um uh did wonderful work to help put together the autonomous Flex Card here um that is offered uh publicly and free of charge by the National Paralysis Research Center. Um But these are things that, you know, again range from very concrete um that are more clinically focused to, you know, adaptive sports programming. Um And these are all part of, I think, really comprehensive S C I care. Um And what we're able to provide. Um So why is S C I care unique? Um I think really we have a social justice lens uh to looking at this um this, you know, from the convention on the rights of persons with disabilities. Um We really approach it from um uh a rights based approach and sort of trying to get people back to the, the community. Um We also look at it long term. So looking at the burden of spinal cord injury disease and trying to help promote health long term, um I think we excel in that um even more than some of our other colleagues looking at chronic care models. Um and this is just um looking at the, the lancet um global burden of spinal cord injury among neurologic disorders. Um We also, I think are really collaborative. So, you know, in terms of trying to expand that expertise, um we don't have a phone that we can pick up, but we do have a wonderful series. This was published in uh 2020 and 2021 in um topics and spain of perjury research. But um it's a wonderful uh um compilation of resources um that look at um primary care uh providers um and guides to different concerns with spinal perjury B A specificity, um ad accessibility or preventive health. Uh So we focus long term on community participation. Um We have meaningful performance and outcome metrics that capture health and function across settings. Um We provide context specific care um and we use um standardized tools and databases. So we, we're masters of sort of the, the context specific but also looking at standardized tools so that, you know, an Asia exam in um in Denmark is the same Asia exam that is up here in Massachusetts is the same business in Maryland. Um We have clinical research approaches that are simultaneously systems based and both have consumer patient centered and we collaborate across disciplines, institutions and organizations. Um So, like I said, we, we are pro providing this exemplary chronic care before it was formalized into the chronic care model. Um opportunities and challenges I wanted to just mention quickly. Um I think transparency and reporting it will be really important in health care um currently and even more in the future. And so I think with this, it's important to think about what are our metrics that are publicly facing. Um And um how there are uh efforts to unify payment systems within post secure care and what that means for complex spinal cord injury patients. Um I'm really interested in sort of all sorts of things whether you like them or hate them. But um Maryland I thought was interesting because they have this thing called where the cost. Um And so how we think of public reporting of costs and complications as well, I think is important to think about that represents both an opportunity and a challenge. Um And then from health and health equity perspective, I think capturing more, we're great at capturing disability within the PM and R um uh field. But um capturing the intersectionality of um how that relates to other demographic factors, um like race and ethnicity and gender. Um And then how um how that impacts us at a, at a both a, a national level and a state level. So I included some things here from Massachusetts. But um we have um we do have disparities here in Massachusetts um that we're looking at um and we also have disability health care costs in Massachusetts that are 37% of our um our state's health care spending. So, in conclusion, um high quality comprehensive S C I care incorporates structural process and output measures. Um S C I models share similarities with other complex health care models and are built on a social justice lens. Um And they have parallels, but they have unique long term and community based perspectives. Um There are numerous challenges and opportunities facing spinal injury providers and systems of care um including um the value based care um uh care continuity across settings and measuring health equity and value. Um See my references and um thank you so much. I really appreciate um everyone attending. Um and I'm happy to answer any questions. If you have something that we can't get you today, please feel free to email me. Mhm. All right. Well, um again, Doctor Slocum, thank you so much for this really um interesting presentation. I think this is a really great um view of uh not only spinal cord injury but just uh health equity and um issues that face us in by caring for uh disabled populations. And so thank you for kind of taking it in focus and um sharing your experience. Um and everyone, I hope you have a great day. Thank you so much, Doctor.
