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The Data Is In: How AAPM&R's Registry Early Adopte ...
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So welcome, we're gonna talk today about the American Academy of Physical Medicine and Rehab's registry. So welcome everyone. I'm sure some people will still be coming in, but we're just gonna go ahead and get started in the interest of time. So the title of our session is the data is in how the American Academy of Physical Medicine and Rehabilitation's registry early adopter sites are engaging patients to collect valuable data in low back pain and ischemic stroke. Next slide, please. So just a few housekeeping items. This webinar is being recorded to be archived. Please do mute your mics as you join. There is a couple options for you to do a Q&A. One is use the chat function. I do believe that you might be able to also raise your hand as well and then be able to unmute your mic. We'll be able to do that through our technical support team. And if you're having any issues, please do use the chat function and browse for the AAPMNR producer, and they should be able to help you with any technical issues that you may be having. Next slide. So these are our faculty disclosures, and these are the various faculty presenting today. Next slide. So here are our objectives. So one, we want to better understand the workflow challenges from early adopter sites in capturing common physiatric and rehabilitation data elements for low back pain and ischemic stroke populations. We want to discuss the need and implementation of patient-reported outcomes in physiatry clinical settings. And then finally, how to aggregate data from the registry to be used to advance physiatry's position in local and national quality improvement initiatives. Next slide. So here, we're going to provide an overview of the registry and the data that's being collected. We're going to highlight three sites, three of our early adopter sites, Rusk Rehabilitation at NYU, Vanderbilt University Medical Center, and Carolina Neurosurgery and Spine Associates. And then at the end, there'll be an opportunity for questions and answers. Next slide. So first, we're going to go over some aspects of how the registry works. Next slide. So first, we want to thank some of our early adopter sites that have signed so far and are on the various processes of starting their data collection and integration. We have Brooks Rehabilitation, Carolina Neurosurgical and Spine Associates, Rhode Island Hospitals, Rusk Rehabilitation, Shepherd Center, Shirley Ryan Ability Lab, Vanderbilt-Sulworth Rehabilitation Hospital, and Vanderbilt University Medical Center. Next slide. So what's the process for getting data into the registry? Well, it's a combination of two different things. First is clinical and electronic health record data that is sent directly to the registry from the sites. And second is patient-reported data that they complete in questionnaires that is also sent to the registry. The clinical data from the patients is coupled with their electronic health record data into a rich patient-centered outcomes data set. And the nice part about this is that we'll have an opportunity to view this data as it comes in, get continual view of data capture, and meaning the rates of the patient-reported outcomes is being captured as well as the data that is otherwise being entered from the electronic health record. Next slide. So here are some of the domains of data that we're collecting. There are essentially 10 domains that cover areas such as patient demographics, encounter details, practitioner or clinician details, condition or diagnosis details, coverage details, which is really their payer source, medication details, meaning medications that they are currently taking or have been prescribed, observational details, which is typically related to some of the other physical exam and vital signs and history-type findings, any order details, meaning physician orders that were placed for that patient, procedure details, if they had procedures performed, and referral details. And that's more along the lines of if the patient is referred out for care, it could be for additional referrals, say a specialist or even therapy orders. And as you can see here, the total number of data elements is over 90 for both low back pain and ischemic stroke. And really the required ones, as you can see, is about half of those elements or less than half, and then the others being highly recommended and some are optional. So the various sites can choose to participate in all the elements that are there, including the highly recommended optional or just some of the select ones that they have chosen to enter. Next slide, please. Here are some of the patient-reported outcome details, and this comes from PROMIS. So some of these PROMIS domains, and here you can see how the PROMIS domains cover a variety of different areas, including physical functioning, anxiety, depression, fatigue, sleep disturbance, the ability to participate in social roles and activities, pain interference, as well as intensity. And you can see that there are additional questions that are also asked. At the time, in addition to PROMIS, so talk about return to work or work status, anticoagulation medications, any complications the patient may have, patient satisfaction, readmissions, medication adherence, also more information regarding recreational drugs and alcohol use. And then there are some exclusion criteria that you can kind of look down here on the last row, which is the exclusion criteria for low back pain, which includes prior surgery to cancer, diagnoses, and workers' compensation-related visits. Next slide. So really the process is, in terms of sites that get onboarded with the registries, there's initial discussions with the AAPM&R's registry team, and then obviously a legal review of agreements between both the AAPM&R and ArborMetrics, who's the sort of the vendor that does the database and is the one that does the registration. And as well as the pilot site or the site that's applying. And then finally, really a look at the data integration and how data is gonna be exported from the electronic health record of that site into the registry. And in addition, the data importation from the patients themselves, doing an establishing a workflow for that. And finally, going live with the actual data collection. Next slide. So here we're gonna switch off and to one of our examples of our first sites from a Rusk Rehabilitation with Dr. Jeffrey Fein. Yeah, thank you, Mark. Next slide. So Rusk Rehabilitation at NYU, our chair is Steve Flanagan. I'm Jeff Fein, I am the vice chair of network development for Rusk Rehabilitation and the medical director for our 30 bed inpatient rehab unit in Brooklyn out of the a hundred beds inpatient beds for Rusk. My facility is a level one trauma center and a designated stroke interventional center. In addition, our inpatient rehab unit has a joint commission stroke rehabilitation certification. And that process for those that are not aware of the joint commission standards requires a demonstration of clinical excellence in care and outcomes of patients with ischemic stroke. So through our participation in that certification process, we collect a number of outcome metrics already in order to demonstrate the quality of care that we're providing for our patients. Our unit is primarily a neuro rehabilitation unit with polytrauma, brain injury, stroke, ischemic and hemorrhagic stroke that we track for a joint commission. All three of our Rusk campuses will be participating in the ischemic stroke registry. All of them are hospital based. Next slide. So it was important for Rusk to participate in the registry to enhance the outpatient care of our patients with stroke by using the information that we'll get from benchmarking outcome data from the registry. As we mentioned, we expect that we're gonna compliment our existing outpatient data collection with new nuances from the registry in that the registry will be extracting data domains from the EHR, as well as a standardized approach to implementing the promise 29. And from all that data collection, I do think there is an opportunity for us to further enhance the outcomes of our stroke patients in the community. We also looked at it as a way to show our patients that we were doing more data collection and analysis to enhance their individual outcomes with an expectation that it would enhance their satisfaction with the care they received at NYU. And then finally, similar to the way we use other data registries to enhance our outcomes like Vizient or doing data runs through our IRF data vendor, where we use UDS-MR at NYU, that we use those sort of data analyses to drive our quality improvement projects and continue to kind of push forward with identifying areas for improvement. And we feel that participating in the registry will help us to do that because it will give us another data set to compare our outcomes and further enhance the care we provide. Ultimately, we felt it was important to join the registry in the pilot phase to share our experience managing patients with stroke and to help to shape the output of the registry to provide practical, pragmatic, meaningful information to the physiatrists in post-acute settings, outpatient settings, to further more effectively manage their patients and their outcomes. Next slide. So our onboarding overview, our data integration updates, so that in our medical record, electronic medical record or health record, the addresses to locate where all this data is being pulled take some time. We've completed that mapping and file transfer data to Arbor Metrics and we're now ready for the next steps, which are onboarding our physicians. We already clinically have tracked our census of inpatient ischemic and hemorrhagic stroke patients prior to participating in the registry. So that process helps us to double check that there aren't any cases that we haven't missed potentially loading into the registry. Our next steps are onboarding our outpatient clinicians, our inpatient and outpatient clinicians, and to kick off the implementation of how we will gather the data going forward for these patients and how to review it in clinical encounters. We wanna look at our clinical workflow, including if patients have not had the opportunity to complete the PROMISE tool prior to their outpatient clinic visit, to have the mechanism by which it can be entered as part of their rooming of the patient. We have planned in advance, anticipating time to review the accuracy of the data in the registry. There will be several clinicians that are assigned to do data reviews to review accuracy. And we'll have regularly scheduled, likely quarterly meetings with all of our outpatient physicians to review how they're using the data from the registry in their clinical encounters, and ultimately how it affects their workflow in the clinic. So we're not adding exorbitant amount of additional time to their patient encounters. Next slide. So here's a summary of our workflow at NYU. And we've sort of embedded the process into some of our existing discharge processes. We have a quality improvement projects that have been going on for several years now for patients to become registered to use the patient portal in our system that's called MyChart. And we have a yield of over 80, maybe 85% of patients that have activated MyChart prior to the discharge from the rehab unit. And that then helps us to leverage all the tools that are available in that kind of digital realm to encourage patients to keep their appointments and review their meds, communicate with their providers, and to push surveys to them through their phone or through their computer. So we also have a pre-existing process where we have several phone calls post-discharge that are in place to help patients navigate their way into community and to double check that all the things we've planned for that transition to community have been in place. And it's an opportunity for us to reinforce the participation in the registry and the patient responsibility for their responses. Through that same patient portal, MyChart, we have an ability to reinforce the commitment to complete the survey before returning to the provider. And should that not happen before the patient arrives in the clinic, then we have iPads and kiosks for patients to complete the promise before they see their provider in the encounter. Okay, next slide. Right, so key learnings from RUSC during the implementation. The first one, patience is key during implementation because there are a lot of moving parts and a lot of people that need to participate in getting things approved and onboarded. Onboarding has to include, obviously, hospital leadership and legal contracting, but also data security, quality improvement department, representatives from the patient satisfaction teams, in addition to the rehab providers that are gonna be sort of using the data and implementing the data. And that takes some time to corral all those different interests in alignment and recognizing the priority of why we wanted to do this and recognizing that this is the first step of the academy to develop a registry and how NYU and even other facilities will be sort of participating in shaping the registry as a whole. Another learning was involve IT services early because the identification of the addresses in your medical record takes a fair amount of time. And requires a number of runs until all the kinks are worked out. And there's a staffing cost associated with the time for those programmers. So involve them early to allow you to hit your targeted deadlines. Our impression is that the selection of multiple data elements from the electronic health record in addition to the promise tool provides significant power for the multivariate analysis when we're looking for contributors to enhanced outcome or delayed outcome. And I think this will be a nice compliment to our other data sets that we have in play already. Another benefit is that you can, the registry will provide a benchmarking of recovery and you can map your patients on a trajectory of stroke recovery comparing to other patients around the country. We expect that ultimately the registry will be able to provide best practice advisories based on current clinical practice guidelines to guide clinicians to extract more function in their outcomes by implementing changes in the treatment plan. That's a ways off, but I still think that by having the data available, it provides the opportunity for this nuanced additional contribution of the registry. That's my last slide, so thank you. All right, that would mean I'm up next. So thanks for having me, I'm Byron Schneider. I am also speaking, Dr. Kennedy's in the room here and we're gonna talk about our experience from Vanderbilt. So while most of you are visiting from afar, I can actually say that I'm in Nashville and enjoying the conference. Next slide, please. So I'm gonna talk a little bit about what we're doing at Vanderbilt. Next slide, please. So our role is Dr. Kennedy's the department chair, and we're both involved in this in the sense that there is a lot of work that goes in on the background and he did a lot of that heavy lifting. And then I'm one of the faculty members as part of our spine center that's been doing some of the clinical work on this as well. We just started enrolling patients into the registry last month, so this is as much of a talk about of our experience getting going more so than what we've done. But I thought it was very important for us to share this with you. And it was very important to us as an institution and I think to us personally about joining the registry. So first and foremost, the registry is gonna be our voice as the academy or as a group of physiatrists. I think many of us or most of us or all of us would believe that we're best suited to taking care of patients with spine problems and spine pain, at least being the frontline providers for that. And yet there's a large heterogeneity of how those patients filter through the healthcare system across the country. And being able to participate in this registry is as a field going to be one of our, it's for certain our largest opportunity, but really one of our first opportunities to show what we do. And that's important from a research perspective, but I think even more importantly from a societal perspective, clinical outcomes research is in becoming even more so a major driver of policy. And while that has very similar applications to perhaps getting patients into inpatient rehab facilities post-stroke, if we want physiatrists to take care of these patients as we believe we're best suited for, we're gonna have to show, put our money where our mouth is and show that we're the best at it or that we're good at it. And participating in this registry is really gonna be the best opportunity, not only for us, but for most people across this country to participate in that process. Within our internal organization, there were other drivers on joining the registry. So for one, it's an opportunity to measure ourselves and there is a huge difficulty with improving yourself unless you can measure yourself. And as a spine center and as a group of physiatrists at our institution, this is gonna be the first opportunity we've had and a really good opportunity to actually see how we're doing. From an institutional perspective as well, we're at a university and we have a research mission and we believe that it's important to contribute to research and participating in the registry is going to not only result in valuable outcomes research down the road, but it allows us to participate in that. And similarly to why it's important for everyone to join the registry, we also believe that another mission that we have as PM&R and at our institution is to advocate and support the field. And I would implore everyone to consider the importance of being part of the registry because not only does it give you a chance to measure yourself and give you a chance to improve yourselves and therefore hopefully improve your patient's outcomes, but if you've heard the expression, a high tide floats all boats, we believe that if we can help the field in this manner, that it will help us in return. And we're excited to engage in that relationship. Next slide, please. So when you think about onboarding and this is probably for many people, the biggest hurdle, there is a lot of work. You have to navigate the contractual and the regulatory issues between your own institution and the registry. So the first thing I would say is that the AAPM&R, this was very proactive, responsive, and accommodating through this process. And my one-liner here would be, if we could get through this at Vanderbilt, then I'm sure you can too. Dr. Kennedy, I think rightfully wanted to note though, that these politics or red tape is gonna vary from institution to institution. And so it's also important for you to have a strong sense of your place within your institution and also have a strong sense of what your institution is trying to accomplish. So for example, one place, or let me take that a step back. So let's say if there are concerns about data security, and your institution may be very protective and rightfully so, that may be a hurdle that you have to get over to explain that this data can be shared in a secure manner. But a way to combat that would be that if Vanderbilt is going to be seen and our department is going to be seen as a leader in spine care, well, we can't really do that in a silo. So we were able to collaborate with Vanderbilt in the sense that our mission to be leaders in the field is very much in line with participating in a registry like that. And there's going to be different ways to align your goals with your institutional goals, and that's going to be required to get over these hurdles, because as helpful as the AAPM&R is, there's still another half to that coin, and that's going to be unique to your institution. But again, I would double down on the fact that if we could get it done at Vanderbilt, I'm sure you can too. When you think about the clinical application, so as mentioned, we just started this. We went live back in September, and I can promise you that it has been the most seamless transition that you could imagine. So not only has there been no interruption to our clinical workflow, if I wasn't involved on the back end with getting a little bit of this going, I would suspect that other than our face-to-face meetings that we've had or our Zoom meetings with the other faculty members that are involved in this and letting them know we're going live, they may not even know, or they certainly would have not been able to tell we went live if they just showed up to work September 1st. And that was really important to us because obviously efficiency in the clinical workspace is important, and so we were able to set this up so that we can run our clinic day-to-day without this being an added ask of our staff or faculty. When we start looking forward of where this is going to go, our first benchmark will be to evaluate our recruitment and our follow-up data, so to see how many people are enrolling and then how many of them are achieving follow-up at set time points. And again, this is all pretty easy. So again, the Academy has been very helpful, and they're going to participate in reviewing this data for us, but we also have access to this data. Once we can establish that we are recruiting an appropriate number of patients and getting appropriate follow-up, our next step would be to start looking at the outcomes data and just seeing what it shows. But the end game here, aside from contributing to research, which is really part of that evaluating our data, is there's a lot of opportunity here to integrate this data into our clinical assessment or even our decision-making. So we're all aware that patients may tell their physicians things that may be more favorable than what they would report if you had a blinded observer or even to your other staff, and sometimes that can convolute what we think they need or don't need. And if we can integrate not only now enrolling patients, but integrate what they're reporting to us when we see them, that's going to allow us to make more objective determinations of whether or not they're actually getting better and subsequently hopefully allow us to provide better care. And so there is a very long-term goal here on how this will benefit our patients, our institution, and our field, and we're very excited about all of that. Next slide, please. So the way we have it set up at our institution, and I would highlight that, again, the flexibility of this process has allowed us to set this up this way because, if I'm being honest, it's probably required a little bit more work on the front end of the registry the way we have this set up. And so today at Vanderbilt, if you're a patient and then you show up to my clinic or any of our other physicians' clinics and you meet the criteria to be in the registry, which is really just that you're over 18, that you're a new patient, that you have an email address, and that you get billed or, you know, diagnosed with an eligible CPT code, then you're eligible for the registry. So I will see a patient, I will assess them when I'm done, I'll drop my note, I'll bill, a CPT code and a diagnosis code is tied to that. And as long as that code and their demographics fit, they automatically are triggered to get an email from the registry asking them to fill out their baseline demographics and their baseline measures, and that's done almost instantaneously. The hang-up is on how quickly I can get that into our system. And then once that data is sent over to the registry, the patient gets the email right away, and the hope is that they'll fill out that baseline data within 24 to 48 hours. Next slide, please. Similarly, I may never see that patient again. And even if I don't, or even if I do and I change a diagnosis code or whatever happens, they're automatically now triggered to get sent follow-up to collect data on how they were doing. So again, this requires no work on my end or on the faculty's end. All I've had to do is see the patient as I normally do, bill and code them correctly, and the rest of this is running itself right now. I don't need to know who needs follow-up or when they need follow-up. This is all occurring behind the scenes. And even if they don't initially follow up as they're supposed to, they're going to get follow-up reminders. In a best case scenario, and we're certainly trying to integrate this, we'll have an active role in reminding patients that we're running the registry and encouraging them to sign up and encouraging them to follow up. But the nuts and bolts of what's needed to get this done is really irrespective of what I do on a day-to-day basis. There's a lot of freedom, essentially, so we have a dashboard or a network that we can log into. And while we're not at this point yet, I can at any point get into the system and start to see the outcomes that the patients are reporting. And again, next level things that we are hoping to accomplish is to have that process potentially integrated or at least easy or seamless, where we're doing that not only from a research perspective, but from a patient care perspective. Next slide, please. So our key learning points as we've excitingly engaged in this endeavor is, for one, I can't stress enough how much the AAPM&R is here to help and to make this process feasible and easy. They understand that there is a lot of work on the front end. They've gone through this now with multiple different institutions. They have much more expertise than any of us have when going through it the first time. They're very generous with lending that expertise and putting in essentially man hours, you know, emails, Zoom calls, meetings, whatever they need to do to help facilitate it. From our perspective, one of the things that became very clear is we had to have a good feel, and Dr. Kennedy can comment this at the end if needed, but identifying your internal personnel that can help us. So there's a lot of interfacing that's going on. We need IT people at our institution that understand how to pull the data from Epic and how to get that sent over to the registry. You need to understand your legal team and be able to figure out the legal contracts, and again, that also ties to data security. And so this is not something that you do on your own. This is something that your institution is engaged in with multiple people, and figuring out who those people are is going to make your life a lot easier. Again, as you saw from our workflow, it's pretty hands-free for us, and we may change that down the road. We've talked about doing things like having iPads where patients can enter this information at their visit, but the key point is is that we weren't set up to do it that way right now, and we had the flexibility to tailor the workflow that enabled us to go live and enabled us to do it in a way that worked for our locations, and that includes different physicians and different clinic sites with different support staff. Our spine center is spread out much more geographically than our general PM&R department, and we were still able to find solutions that worked for all of us. Since this has started, it's become much more exciting. I think there was a lot of anticipation on the front end that we could do it, but now that it's rolling, we're seeing already, it's very early, but the fruits of our labor coming in, and once you do all the work, we now have a robust or what will be a very robust amount of data that will be helpful to us, and that's exciting. That should be exciting to you as a physician, and it's exciting to us as an institution, and again, we really have found that this is additive to what we do, so it's additive to our research. It's additive to our internal metrics. It's additive to eventually our patient experience. We are engaged with other research projects that have registries. Vanderbilt houses a surgical registry that's national. We have a registry for spine injections, and this has only complemented that. This has not deterred from any of our other projects, small or large, and it's really been a win-win all around, and so we're very excited about that. So I believe that's my last slide, but I'll say next slide nonetheless, and otherwise, thank you for listening, and we'll be around to answer any questions at the end. I see a lot that were coming here on the text stream. Hey, everybody. Hi. Thanks a lot, Byron. That was a great talk. I'm John Lesher, and I'm from Carolina Neurosurgery and Spine Associates. Next slide. I'm chairman of the Low Back Pain Registry Committee, and I've been involved in registry collection or outcomes collection with the registry through the academy for approximately the last five years. I practice in a large multi-specialty group in Charlotte comprised largely of neurosurgeons, physiatrists. We have a large physical therapy department, two orthopedic spine surgeons, and we're hiring our first neurologist in January. I also do clinical instruction with the rehab program here through Carolinas Rehab. Why I got interested in the registry or outcomes collection is simply I really wanted to objectively measure the care that I was providing and essentially learn how ways to improve it, collaborate with other physiatrists doing the same work, and figuring out best practices so that ultimately we can improve our care and make our specialty stronger. At my group, we have a long history of surgical outcomes collections with the neurosurgeons, and that environment has kind of rubbed off on me. Our neurosurgeons have been involved in registry and data collection through the N2QOD or quality outcomes database through Vanderbilt, and more recently just joined with orthopedic surgery to do the National Spine Registry over the past couple years. Next slide. When I look at kind of the onboarding overview that's data collection in my clinic over the past few years, it's evolved. The picture on the slide is of the Mars rover named Perseverance, which landed on Mars earlier this year, and I think the word Perseverance is aptly named for this kind of project because it has been initially quite a bit of hard work and some heavy lifting, but as the process has evolved, it's definitely gotten a lot easier. Initially, we kind of cast the outcomes nets far and wide, and we're doing a lot of paper collection with our patients, so patients were filling out the questionnaires, and then we were taking that information, entering it electronically. We were collecting numerous pros, including the oswestry, the uroqual, VAS back and leg, and then on follow-up visits, patient satisfaction surveys, and we were trying to capture all of this at check-in when patients were checking in for their visits, and as anyone knows who practices in a musculoskeletal or a low back pain clinic, a lot of times patients that are sent to you for low back pain don't really have low back pain or have a myriad of other comorbidities that need addressing before their low back, so our efforts have clearly evolved over the past few years. Currently, we have transitioned to a tablet interface, so patients are entering their data and filling out the questions electronically, and then that is being uploaded to REMR and then sent to the vendor Arbormetrics. We've transitioned away from numerous pros to using the PROMIS-29, still collecting VAS back and leg, and our process is largely physician-directed. Yes, there is some behind-the-scenes collection, but really it's dependent on the physician educating patients on the importance of the questionnaires and importance of outcomes collection to try to engage patients to take the care seriously, so it's a little bit different from just a set-it-and-kind-of-forget-it model. Currently, we are collecting follow-up data and sending it to Arbormetrics. Next slide, please. This is kind of a schematic of the nuts and bolts of our collection, so the way our data collection works currently is the day before clinic, my team will evaluate the following day's roster of patients, and sometimes we do that the day before clinic or the morning of. My team has been trained to kind of evaluate for patients that fit the inclusion criteria for data collection. We practice in a largely independent group, so we are not part of a network that has easy access to primary care providers or our referring doctors, so we're very dependent on getting patient information for patients that are being seen, and as you know, sometimes the information that is sent over for a referral is very complete, but more times than not, it isn't complete, so if we can determine ahead of time if these patients fit the criteria, when that patient comes and checks in, the front desk staff gives them the tablet to fill out. We have coached and educated our front desk staff to tell the patient about the registry, about outcomes collection, and why it's important. If we're unsure about the patient fitting the data collection, then I will see the patient, make that assessment, explain the registry to them, provide them with the tablet, and more times than not, the patient fills out the questionnaire while they're meeting with my secretary and doing other scheduling. If the patient does not have time to do that or clinic is running behind, we have built in within our EMR a button that we press, and the patient then is sent the questionnaire within 48 hours of their visit. In doing this, I really try to capture as much patient data at the time of visit, because the patient is very much engaged in what we're discussing and their treatment, so I found that that's pretty important. Next slide, please. Our follow-up now currently, since we've transitioned to Arbometrics, is all electronic, so patients are receiving emails or texts. Actually, this morning, I saw a patient back for a six-week follow-up, and I asked about, hey, did you receive the questionnaires, and he said, well, I received a low back pain survey text, and there was some funny letters on it, AAPMNR, and I subsequently deleted it, so education process is ongoing, and work is still being done to ensure appropriate follow-up data collection is done. Next slide, please. This slide here shows my data collection that I've done over the past year. I try to set a goal of enrolling one to two patients a day in my clinic, and that's variable based on patient composition. What I see that day is also based on vacation times for myself and staff. What I found that if my staff, a couple of them are out at the same time and visiting or new staff are filling in who aren't as well-versed with the registry process, my enrollment will dip, but my goal is to try to get one patient or more per clinic. You can see the data shows that it fluctuates. Clearly, some months are better than others. Next slide. This slide is essentially showing my follow-up collection rate for really the same time period over the last year. What we know from outcomes collection is ideally you want to be trying to get 60% to 80% or higher of a collection rate at all of your follow-up time points. You can see by my data that the six-week follow-up time point is pretty solid, but then once you get out to three and six months, the follow-up rates start to suffer a little bit. Working with my surgical colleagues, they are doing follow-up collection out to one and two years, and their collection rates are typically 80% or higher at one year. Again, a lot of these patients have instrumented fusion or hardware, and it's being very closely followed. It's a little bit different than conservative care for back issues. Next slide, please. This is just a longer-term view of my follow-up rates for essentially the last three years out to six months. Again, this shows six weeks, mid-60s, but then follow-up at three and six months is dropping down. Again, I'm encouraged to try to improve this and learn from my colleagues about ways that they're doing it to see if I can get better follow-up rates. Next slide, please. This slide just shows that over the past month, the ways in which we are collecting follow-up data. Now, over the last two months, our group has switched to the Arbor Metrics model of follow-up collection. Prior to that, we were doing a combination of collecting follow-up data through office visits, telephone calls, and emails. You can see based on the data here, for people that were eligible, we were roughly contacting them either through a phone call or email two to three times for each time point. For the month of September, roughly two-thirds of that group's follow-up patients were submitting data through email, and the rest, a quarter, typically through phone calls. Next slide, please. This data here just shows the data that is being submitted to the Arbor Metrics. Like I said before, we've switched over to the Arbor Metrics way over the last two months. During that time, I had 25 patients meet registry criteria. Twenty-four of them completed their baselines, and currently, five of them are eligible for the six-week follow-up. The small number of five eligible is probably representative just of those patients that have been enrolled, have not yet reached the six-month interval to fill out the next set of questionnaires. Next slide, please. What have I learned or what has our group learned through this whole process? First and foremost, physician engagement is vital. This is something where physicians have to be motivated in educating their patients as well as, just as importantly, their staff on why this is being done and focusing on really it's trying to improve the care we provide. I wish I could say it was a set it and forget it kind of model, a turnkey type model with advanced artificial intelligence applications and advanced algorithms doing all the legwork. Perhaps that will be the case in the next few years, but currently, it is not. Being interested in this process is going to require physician involvement and engagement. As Byron has said, you really want to minimize your clinic workflows. Our model is by no means the gold-templated model. Different clinics, different institutions are going to figure out what works best for them, determine how their follow-up rates are, and make adjustments. The team approach is clearly definitely needed. Team members with strong IT as well as data management proficiencies is truly essential to this effort. Another thing that I have found is crucial is getting monthly feedback. If you start this effort or endeavor and just say, oh, you know, I'll look at my data at six months or 12 months and that'll be it, it's just not going to work. You have to be getting monthly feedback on what's working or what's not. I typically have either a Zoom call or a telephone call with my team, the data management aspects of my team, once every two weeks. What I've shown already just with data collection is follow-up past six months is not easy. I'm greatly looking forward to learning from the other participants in the registry on how to get that or how to improve it or get it better. I think this is my last slide, so I'd like to send a very strong thank you to Isabel Tenorio and Deb Fortmiller, who work on my team, and thank them for the data collection that they've helped me perform. Thanks. Dr. Novick, you're muted. That's the problem. Okay. Sorry about that, everyone. So you can go to the next slide. First of all, I want to thank John, Jeff, Byron, fabulous presentation to kind of give us an insight onto your clinics and some of the obstacles, but also some of the benefits of participating in the registry. I think there's a couple of really key take-home messages, and John sort of alluded to it, but that not every clinic has to do it the same way, and in fact, your workflow is going to be different from facility to facility. The real key is that the registry takes the data that's aggregated and then does the interpretation of it so that we can compare apples to apples at each facility, even if how your flow gets into the registry is slightly different. And I think the second real take-home point is that although, as John said, you need faculty, you need physician engagement, you can set this up without very significant workflow disruption, and that's been one of the questions that was asked in the chat room or the chat box already, how much physician involvement, and the answer, I'll let the rest of the team answer that in a little bit, but the answer is, if it's set up correctly, it has not been tremendous, and we can go ahead and go to the next slide. What you see here is a little bit of preview data, and this is within the registry, we're going to have provider and administration models that really help us interpret, set up different dashboards and reports so we're able to see the data. Go ahead to the next slide. And then each data point, we can then drill down, take a deeper dive to the aggregated data. Here you see we looked a little bit into race and age and how that breaks out. Go ahead, next slide. And then the patient reported outcome data would also have a preview. Here we're looking at a preview of the PRO dashboard for providers. You can see that you're able to get your baseline responses and then drill down into each of the different PROMIS domains as compared to the baseline of the aggregated group. That's really the value of big data that you're comparing not just your facility's data but facilities across the whole registry. Next slide. We've over the last few months, our registry steering committee have worked hard to define the PRO metrics based on the PROMIS 29. This scorecard just will show you a little bit how the data points are for your particular patient population. At the top, you can see the percentage of patients who have completed the PRO assessment and those that either maintained or improved their PROMIS 29 score from baseline to follow-up. Below you can drill down into each PROMIS domain to begin to understand the patients who maintained or improved their score in each individual area. And you could hover over any particular domain, in this case, sleep disturbance, and it explains that outcome measure specifically. And next slide. Talking about engagement, a lot of different ways we've had engagement to different groups, site-specific calls, and that's really part of the process as we develop this registry is that the sites that are involved are helping to form what data points we want to examine and how the registry grows and develops. We've had quarterly calls with all of the sites, including physicians, the clinicians, but also IT department, leadership, and others when appropriate. We've had the AAPMNR registry committee and subcommittee engagement. And then there's a lot of different educational opportunities. Next slide. So if you're interested in learning more, and I hope all of you are, because this really big data is the future, and we need to be able to use this data to show how we're helping our patients and to show the benefits of what we do. So a couple of different ways you can visit at the website, www.aapmnr.org slash registry, or email, or visit the registry team in the booth during the assembly. Next slide. And with that, I'll open up for questions. We've had a few questions already come through the chat box. And just starting, the first question, is the database able to capture epidemiology uncomplicated post-stroke patients and development of spasticity? My computer is going crazy on me, I'm sorry. I'm actually asking if it captures spasticity. And right now, that's not one of the areas we are currently looking at, but we plan on developing it. We've had questions. So just for that one, Dr. Novick, yes. So there's a, I think they're asking whether or not, say, we're collecting actual spasticity measurements per se by physical exam, and it's not currently part of the data elements per se. Just to answer that question, you know, for the procedures or referrals we could get at if a patient's referred out for spasticity management. So but yeah, obviously, that's going to be an area we want to explore further. And I think that's one of the advantages of the sites as we get together for these calls is what are the other next areas to sort of explore? I think, you know, we had to start somewhere in terms of the populations, both with the stroke population and the low back pain population. And, you know, I think all sites have all struggled with, we want to measure everything on everybody. And then the same token, we still need to kind of define what we're trying to do so that we don't just have all this data on a bunch of patients that are not necessarily all associated. So yeah, there is a fine line between where we start, but obviously, that spasticity will clearly be something we want to look at in the future. And we are collecting data regarding medications. So if they are on antispasticity medicines, we would currently capture that. And actually diagnoses code. So, you know, a lot of, you know, one of the things is, is how do we actually get patients in the database, it's actually based on really on the ICD-10 code of the patient. And that's how it's going to go in for either stroke or low back pain is that's how you get entered in and registers based on that coding. So it's really up to the provider. So obviously, they're going to record the insulin codes as well. Okay. And then we had a question that maybe I'll throw out there to Byron. Are there unique or more barriers, challenges or opportunity benefits for the profit rehab hospitals to participate in the registry compared to the nonprofit institutions or university based rehab hospitals? And I think we have a little smathering of those involved with both nonprofit and profit. So it's, it's a good discussion. Yeah, and I think that was addressed a little bit in the answers already as well. But in terms of challenges, I would go back to saying, you know, there's going to be a cost to this wherever you are, and wherever you are also has various missions and visions. So nobody's going to profit off of this. So I don't, you know, Vanderbilt didn't do it because we're making money off of it. And again, it's more looking at, is this investment in line with what your health institution is trying to do? And I believe that there are going to be common grounds throughout for that. In terms of if the questions about contractual issues and things like that, again, I don't, I'm not even Dr. Kennedy may be able to comment on that, but I'm not sure that those financial decisions have to do with your nonprofit status or not. I think most healthcare systems are also interested in process improvement and leadership and developing their field, being able to measure themselves and, you know, market what they do well. And all of those things I think are ubiquitous across the healthcare systems. One of the big concerns that comes up initially when talking to either for-profit or large organization is proprietary of the data. And I think a lot of companies or businesses that are worried about the competitiveness worry about where their data is going to go. And I think that's one thing that as we educate sites to encourage them to understand is that the data that's put into the registry is anonymous on every level. It's anonymous to physician, anonymous to site, and anonymous to patient, which means that nobody can compare A site to B site. And that's actually what we want to discourage. We're not looking to have sites compete with each other or for-profits to compete against academic to private practice. We absolutely don't want that to happen. We want all boats to rise, which means we want the specialty to compete with itself to make it better. So as we talk to for-profit sites and reassure them that, then things start to warm up more. But I think that's always the worry with a for-profit system is, are they going to use my data to reduce my competitiveness? But I do think that as we aggregate data, if we see very effective treatment costs, very efficient treatments, that is something that potentially could then be taken back to payers and say, here's what we do, and here's the data that shows it works. And in that sense, could be a monetary benefit for for-profit facilities. Yeah, for everybody, in fact. That's right. I would agree. And just to add into that a little bit more, I mean, I think non-for-profit have one set of goals and a for-profit do have a separate set, but their overall goals are to be competitive, to deliver the highest care and do what's right. And I think that if you're given the data, whether you're doing well or not, you can improve upon it and use that each way. And you just have to be mindful of the politics and how you're selling that. So I'm going to give a shout out to Encompass Health. Encompass Health is one of the largest for-profit ventures for inpatient rehab in the United States. And they initially had some concerns with this. And after talking with them, they have agreed. And we're now launching this at Stalwart Rehabilitation Hospital, which is a joint venture. And part of it is they recognize this is about showing the value of inpatient rehab, the value of what we're doing. And this isn't all. This is exactly as Dr. Zaka says, this is the rising tide lifts all ships. If we can show people with strokes do really well with inpatient rehab and add that to a large database, that benefits the for-profits, the not-for-profits, the PM&Rs, everybody in that group. And I think that was the selling point that they agreed to. And I'm thrilled that they've stepped up and really on board with this because it's essential to have them. Yeah, no, we're very glad they did step up. I was just going to say the only small comment I would add to that is spine care is one of the largest patient volume things in this country. And also there's a lot of money that flows through that and it's all elective care. And again, having an opportunity to measure yourself or, you know, if you're not part of this, you might be behind the times eventually in terms of figuring out how patients with low back pain flow through your system and what their outcomes are. You know, it could be viewed as a competitive advantage in reality to be part of something like this. Correct. So moving on to the next questions, which we're sure was to come, we were asked how much additional time burden is there for the physician and the staff? And I think I would, since John, you've probably had the longest experience of collecting the data. Maybe we can give your experience versus Jeff's experience. Yeah. So the initial process, it is somewhat time intensive, especially if you're going to try to capture patient data at the time of the visits with the patient. You have to educate your team. So my secretary, my medical assistant, the front desk staff, they all know about the outcomes collection for low back pain, for non-surgical low back. And that takes some education. Now, will we continue with this as, you know, indefinitely into the future? We'll probably do a hybrid model to some degree where there'll be data collection electronically, but also collected in the clinics. But to answer the question, there is a little bit of work up front. You have to educate your team about it and you have to educate the patients as well. Because a lot of times, you know, just with the example that I gave with the patient that I saw today in clinic, and I saw that they were at six weeks, and I asked, hey, did you get that text or email for the questionnaire? He's like, well, yeah, I got something, but I deleted it. So clearly, if this kind of happens in a vacuum and the patient doesn't have the right message on this, I mean, we all are inundated with so much electronic email and text. And if we don't really see something that's really familiar with us, we're going to delete it. I'm told we're right up against the time. So in a 10 second, you want to give your experience with that work, Jeff? Sure. So we're just onboarding our team, but ultimately, we do expect there'll be some incremental increase in the amount of time to review the data that's coming out of the registry and the PROMISE tool with patients and encounters, but no different than reviewing a radiology study or a lab report. So we don't expect it to be a lot of extra time, but value added time for sure. Okay. And with that, I want to thank everybody for their attendance. We have one question about any comments from the PM and our registry staff, and I wish we had time because they are so knowledgeable and keep us all on track and really have helped this process move forward. So we do appreciate them and we'll get some comments out from them at some point. Thank you, everyone. Okay. Thank you.
Video Summary
The video discusses the American Academy of Physical Medicine and Rehabilitation's registry and how early adopter sites are engaging patients to collect valuable data on low back pain and ischemic stroke. The video provides insights from three early adopter sites, including Rusk Rehabilitation at NYU, Vanderbilt University Medical Center, and Carolina Neurosurgery and Spine Associates. The presenters highlight the challenges and benefits of implementing the registry, including the importance of physician engagement, the need for IT support, and the ability to measure and improve patient outcomes. The video also showcases the data elements and patient-reported outcome measures being collected, as well as the workflow for data integration. The presenters emphasize that participating in the registry is an opportunity to contribute to research, advocate for the field of physiatry, and improve patient care. They discuss the importance of ongoing communication and feedback to ensure successful implementation and data collection. Overall, the video highlights the value of participating in the registry and the potential for using data to drive quality improvement initiatives in physiatry.
Keywords
registry
data collection
low back pain
ischemic stroke
physician engagement
patient outcomes
data integration
research
improve patient care
quality improvement initiatives
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