Change Makers: A Podcast from APH

The Wilmer Eye Institute

July 09, 2020 American Printing House Episode 10
Change Makers: A Podcast from APH
The Wilmer Eye Institute
Chapters
Change Makers: A Podcast from APH
The Wilmer Eye Institute
Jul 09, 2020 Episode 10
American Printing House

The history of the field of blindness is rich and storied. While APH has long focused on education and resources for people who are blind, The Wilmer Eye Institute from Johns Hopkins has focused on research, diagnosis and treatment of eye conditions. APH President, Craig Meador sits down with leaders from Wilmer to discuss their past, their goals, and how we can all work together to create a future that belongs to everyone.

Guests:

Jim Deremeik - The Education Rehabilitation Program Manager at the Low Vision Clinic. He’s worked at Johns Hopkins for 26 years.

Judy Goldstein - The Director of Low Vision Rehabilitation Services at Wilmer, and an associate professor of ophthalmology. She spent 10+ years at a private low vision practice, and has now been with Johns Hopkins for more than 15 years, working in clinical care research and teaching.

 

Show Notes Transcript

The history of the field of blindness is rich and storied. While APH has long focused on education and resources for people who are blind, The Wilmer Eye Institute from Johns Hopkins has focused on research, diagnosis and treatment of eye conditions. APH President, Craig Meador sits down with leaders from Wilmer to discuss their past, their goals, and how we can all work together to create a future that belongs to everyone.

Guests:

Jim Deremeik - The Education Rehabilitation Program Manager at the Low Vision Clinic. He’s worked at Johns Hopkins for 26 years.

Judy Goldstein - The Director of Low Vision Rehabilitation Services at Wilmer, and an associate professor of ophthalmology. She spent 10+ years at a private low vision practice, and has now been with Johns Hopkins for more than 15 years, working in clinical care research and teaching.

 

Jack Fox:

Welcome to Change Makers, a podcast from APH. We're talking to people from around the world who are creating positive change in the lives of people who are blind or visually impaired. Here's your host.

Jonathan Wahl:

Welcome back to Change Makers. My name is Jonathan Wahl, and today is our 10th episode. If you haven't been following along, be sure to go back and listen. All episodes are available on Spotify and Apple podcast. On today's episode, APH, president Craig Meador is helping us get the big picture behind what it takes to provide the right resources for people with visual impairments. Here at APH, we primarily focuse on educational materials, products, and resources, but there's another really important portion of our field. That's the medical side: diagnosis, research and management of eye conditions. Today, Craig sits down with two Change Makers from the Wilmer Eye Institute from Johns Hopkins Medicine. Our guests are Jim Deremeik, the Education Rehabilitation Program Manager at the Low Vision Clinic. He's worked at Johns Hopkins for 26 years. And Judy Goldstein, the Director of Low Vision Rehabilitation Services at Wilmar, and an Associate Professor of Ophthalmology. She spent 10 plus years at a private low vision practice and has now been with Johns Hopkins for more than 15 years working in clinical care research and teaching.Here's APH President Craig Meador.

Craig Meador:

Well, first of all, I want to thank you both for joining me today. This past year I had the opportunity of, and I'm talking to the field here, because I have had the opportunity to go to the Wilmer Eye Institute. And that was a magical place. There are, there are few places to go in our field, and I've been in the field a long time. And that is definitely a bucket list destination for anyone who is a professional in this field, because it represents such a rich history. And it is the nation's leading research facility, but not just research -It is practice. It's so many cutting edge technologies that are being put into practice on a day to day, In real time it was a fascinating visit. I was pinching myself the whole time I was there because of not only the history, but all the future that is happening there on a day to day basis. So, Dr. Goldstein and Jim, if you guys would take a little time, because I know we have a lot of listeners, we have a lot of young teachers, and rehab folks who know of Wllmar, but don't know Wilmar, if that makes sense. So if you guys could take a little bit of time and just tell us maybe a little bit about the history, but even more importantly about the history, of the work that is going on right now at the Wilmer eye Institute at Johns Hopkins.

Jim Deremeik:

Great, thank you for the introduction. And it's our pleasure to share some of our experiences at Johns Hopkins with the field. For those that aren't familiar, Wilmar is part of the Johns Hopkins medical health system. It's located in Baltimore. There's a very rich history. In fact, this year, Wilmer is celebrating its 95th anniversary. It was founded in 1925 and derived its name from an ophthalmologist from Washington DC, who was recruited to set up the first university ophthalmology training program. And thusly it's named Wilmer the gentleman's last name was William Holland Wilmer. And he set the tone for where Wilmer is today in terms of providing eyecare to give you an example of some of the marks that he left. He was the one that established vision requirements through research for the aviation industry, that early precedent back in the 1930s, from his experience in the air force set the tone for the research that was developed with the intent of being functional. Another area that he set forth early on, that folks in the field should be aware of. And most people probably at Wilmer aren't even aware of He in 1929, had the foresight to set up a department of physio optics. Basically the physio optics is what today, the low vision operates under. From our viewpoint, what this refers to is function. So it's related to the function of the individual with any kind of visual concerns. Wilmer, as I mentioned, has been around 95 years. One of the strengths that it's had is its continuity and its dedication to its mission, and to appreciate where we're coming from with the mission. Let me just share with people the mission statement of Wilmer itself: Wilmer is to contribute to the ophthalmic knowledge and intend to reducing blindness and visual impairment at home and around the world through education research and patient care. Thus that carries out today six directors later with the same intent I'm going to share with you just a few names to give you a, an appreciate for some of the history that we're talking about. I mentioned Dr. William, um, Collin Wilmer, who is the first individual, but another name that is familiar to some, and maybe if you're familiar within low vision is Louise Sloan. She was the second director of the physio optics cleaner. Louise Sloan is noted and known for developing low vision devices back before it invoked to have low vision. She also, today, if you look in the history, she is the one that developed the M notation for reading cards and print, and a lot of the reading texts material that you use today, very strong background in optics. Another name early on in the history of Wilmer was a resident who became an ophthalmologist. His name is Dr. Richard Hoover. Dr. Hoover was recruited from the Maryland school for the blind where he was teaching math and PE, went back to medical school and after medical school went on to specialize in ophthalmology from experience at the school for the blind, those that are not familiar with Dr. Hoover, which may be some, he is credited for basically being the father of the long white cane. His is background and interest in parlaying that developed the field of orientation mobility. And for the historians, it's called "parapatology". It's got an official science name. He came up with a technique. He worked with Warren Bledsoe in helping, to develop a science behind this and Russ Williams, after an experience of getting a rehab program set up at Valley Forge, where he then went and got Heinz rehabilitation center in Chicago, set up for world war II veterans today, dr. Hoover's name is associated with vision rehabilitation center here in Baltimore to carry on the work and legacy of his name.

Jim Deremeik:

Another name that people would probably have some connection, the education field as Dr. Arnold Patz in the late 1950s, Dr. Patz, who was the director of Wellmark. And in terms of the eye center had a strong interest in the infants that were going blind. At that time, it was called ROP retinopathy of prematurity, who is Dr. Patz. His theory that a lot of these young infants were getting too much oxygen and basically it was blinding them his work and working with this ended up in coming up with the identification of a cure and a whole new epidemic of students entering schools, sort of blind where now you're having sites even classes in the late fifties, early sixties to these young infants, so that the Patz had done a lot of work and remained that through the rest of his life in working for getting functional programs set up for these young infants having vision problems.

Jim Deremeik:

Another individual in terms of highlighting some of the people that have been at Wilmer's, the Dr. Robert Massof, who came to Wilmer in the early 1970s and help under Dr. Patz his direction set up a vision rehabilitation center within the department of the intent of this was to do research and intervention directly related at low vision though, the center was doing that before. This was being very specific to specific to Dr. Patz, his interest of coming up with some cure and technology that would assist in the treatment of blind, visually impaired individuals. This led to a cooperation and a history of working with the lions and thus the name lions you'll see in the rehabilitation center. And they were the funding source in helping to do the Low Vision Enhancement Project. The first head mounted display that combined magnification contrast and, um, technology in terms of trying to enhance work with folks that have vision problems. So this just highlights a little bit in terms of some of the work that goes on at Wilmer, but all the work goes back to the mission statement of research, teaching, and patient care. And a lot of that's done through a working clinic. So hopefully it gives you a little bit of a background and a quick overview of how the center is set up and what the intent of it is.

Craig Meador:

So that would be enough in itself right there to say, this is a must see place, must go to step foot on these hallowed grounds and be amazed. But there's a lot of when we were there, the research that is going on, I was just blown away. Do you have any, maybe you can speak to some of that, of what the current initiatives are going on and, and some of the things that are happening there at Wilmer.

Judy Goldstein:

Sure. Um, I'd be happy to, um, we have several research, educational quality improvement initiatives that are going on at Wilmer these days and some date back to some of the references that Jim was making and we've continued them and others are relatively new. So, uh, to take off on what Jim was saying, you know, for several decades, there's been a real focus on head mounted, display technology, and how this technology creates an opportunity for vision enhancemen. Because these closed optical systems offer unique opportunities to control the lighting and the contrast and the magnification. Um, we recognize this is probably the future of vision enhancement. Decades ago, as Jim mentioned, the development of the Elvis head mounted display by Dr. Massof made significant enhancements in offering magnification to people with severe vision impairment. Um, but more recently, uh, with the advancements of technology and computing, and off the shelf systems like virtual reality systems, uh, dr. Massof and his team have been working to modify the magnification approach within some of these head mounted, display technologies, testing what we call bubble magnification technology, which essentially only magnifies part of the scene of interest, um, which perhaps is more functional for, with impairment. We know that when we magnify the entire scene, we lose fields of view. Um, so if we can magnify parts of the scene or even magnify in the area where the patient is looking, um, that might enhance their function. Uh, additionally, the team is working in this area is focusing on using the same technology for the purposes of telehealth and other types of research. So we know that, uh, the ability to gather data remotely in cost effective and reliable ways, um, has big advantages when people are doing research, they're oftentimes sending people out into the field to gather data that's expensive, complicated time consuming.

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So if we can, uh, modify this head mounted display to measure, uh, contrast sensitivity, visual acuity, um, and even things like eye movements, uh, we may be able to gather data in a much grander way and a much more reliable way, um, just by using this existing technology and modifying it. And it should be pretty cost effective. Another area where we continue to focus on, um, and this has been a longterm work and we just, um, are continuing to make progress is on the measurement of visual ability. And that's the ability to perform activities that depend on vision for the low vision field. This is a very familiar term to us. Um, but sometimes it gets clouded. Our particular area of interest is primarily with the use of patient centered measures. Uh, we refer to these as visual function questionnaires, and we recognize that the field is still really without a consensus on how do you measure visual ability when a patient walks in with vision impairment, you know, we know how to measure acuity and contrast and visual fields, but how do we really measure function?

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And so this lack of a unified approach, um, creates complexities. And we know that we need to standardize the measurement so that we can compare results between studies to advance the field. So our focus over the past few years has been to take some of these most commonly used instruments, these visual function questionnaires and calibrate them, right. We wouldn't measure acuity if we didn't have a certain level of luminous or optic type or things like that. And the same thing holds true with these visual function questionnaires, they need to be calibrated and regulated. So we've done this with one questionnaire known as the Ivy, and we're currently doing this calibration with the activity inventory. And we're currently working, um, to actually calibrate the national eye Institute visual function questionnaire, which is probably one of the most commonly used VFQs.

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And we recognize that if we can improve the psychometric properties of these instruments by calibrating the items, or we've called these activities, um, and we can improve our analytic approach, um, we can then compare results across studies centers. So one of our team members, Chris Bradley has developed a new analytic approach called this method of success dichotomization. And that improves the accuracy and the precision in the measurement of visual ability. And what's really unique about his work is that he's taking these methods to measure visual ability and not requiring people to understand complex analytic methods and buy special software and learn how to use it. But he's taking these approaches and putting them in a very user friendly approach, such that someone could measure visual function just by putting data into an Excel spreadsheet. So we think by making this simple and easy for other to use others to use, um, we can provide some level of consistency in patient centered metrics.

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You know, on that same vein doctor, John Daniel is doing something similar in his lab where he is, um, measuring patients with ultra low vision, um, and not only using VFQs, but performance measures. So this work in the field of outcomes is critical to advancing the field. Uh, some other areas of work that we're, there are a lot. So I probably won't be able to mention them all, but another area of focus that's a particular interest of mine is the work in, um, low vision rehabilitation care delivery in patients with chronic ocular disease. And I think most everyone in the field recognizes that there are significant challenges in connecting patients to care. Uh, there's been a lot of work that's been published on the barriers, things like transportation, acceptance of loss of vision, um, thinking that nothing more can be done, but really honestly, little meaningful change has been made.

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And we've been working, and collaborating to identify patients potentially in need of care and connecting them to service at the time of their visit. And what we did was we recently completed, uh, almost it was a two year study. It was a pilot project where we created an electronic healthcare record advisory, where patients who met a certain level of visual acuity criteria or a diagnosis criteria, um, we basically have a popup in their medical record and it would base, it would say that these patient is potentially in need of care. Physicians would receive this advisory real time during the visit, and it would give them an opportunity to remind themselves about counseling the patient, um, about care. 'Cause the underlying principle here is that in the course of a busy clinic filled with, you know, 40 or 60 patients with glaucoma or retina problems, you know, physicians may really inadvertently lose sight of the need for care.

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And so if we can put a time to notification, right, when the patient is there, this may be a very practical, pragmatic approach to remind physicians about connecting their patients to care, because it may take multiple conversations with patients to convince them that service is important and needed and beneficial. And sometimes we're not talking about vision enhancement. Sometimes we're just talking about education, counseling and acceptance. So we're really excited about this opportunity to improve healthcare delivery and connecting people to service. Just a few more research initiatives and educational initiatives initiatives. I think I'd like to mention is that, um, some members of our team are working on vision and aging, which is really important.

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And the LOVR net group, which is the lions vision research group, um, or the lions vision rehabilitation network. And in that area, we partner with lions called volunteers to obtain critical patient data on function in advance of the appointment. So they may administer multiple questionnaires to give the clinician data so that when a patient comes in, we know all about the patient rather than spending 20, 30 minutes to try to understand what is the background? What is the function, what is the emotional, physical, and cognitive health of these patients? Um, so there's, um, these are just some of the initiatives that we're working on right now, um, the fellowship program and the ophthalmology residency program, or also some of the educational initiatives that we continue to work on. So I hope that gives, uh, the listeners just a little bit about, uh, some of the areas that are of interest to us and hopefully the field

Craig Meador:

That's amazing. I mean, so many of these I'm writing notes, furiously, as you're talking, we could spend podcasts on every one of these, but, you know, I would just want to hit on a couple notes and, and, uh, Jim, your, your background is in a rehab and this whole bit, uh, once again, just to reiterate for audience Wilmer is this like one stop shop. It's just the most amazing thing because patients are coming in there for care, uh, for follow up care for, uh, there's all this research going on. It all. I mean, if you haven't been to the website, uh, listeners need to get out and look at the website because the research is in depth and it's huge. And the level of service is amazing, but patients are, uh, um, but I find this amazing to hear you say, Judy, that, eh, one of the challenges, even though you guys have it all in, you're doing it all. It's connecting. If I, if I say this wrong, please correct me. But this idea of being able to connect people to care at the time of the visit and, you know, that's as coming from the educational part of it, this was always one of the, the big, uh, of frustrations we had in education circles is getting, uh, education and the medical tied together so that our students and the adults we serve had a, a full, complete program. So I guess I take some solace in the fact that if, if Wilmer is struggling with some of the same stuff, we're all in the same boat, and it's a frustration for all of us within the field, and maybe either one of you can talk to this. I mean, that's obviously a big hurdle, but, uh, you know, do you have answers for that? I mean, it sounds like you're working on some of those and poking at a lot of different ones, but what are those hurdles? And what's the best way that you guys have found to address that? How do you connect all those dots?

Jim Deremeik:

Well, one area that's been addressed is it's inherent in some of the professional preparation and training, what we've done. And Judy alluded to it is on the residency program. Now as part of their training, they're required to actively participate in the low vision clinic. So hopefully you're beginning to instill a need and a value in low vision rehabilitation is they spend some time in the, in the setting going through the clinic. So it's not just taking an online course, they're right there and doing it. The other part to expand a little bit more on what we've done in terms of trying to address it with the helpof Alliance funding, it, we provide a one year fellowship fully funded for an op optometrist or ophthalmologist to go back and practice in their own area to promote the whole need and service a low vision rehabilitation. Um, but Craig, to your point, we struggle with some of the same issues and the program that Judy alluded to, in raising awareness is I think I let her talk a little bit more, we're trying to change behaviors and patterns of referral, and, uh, it's easier said than done, but we're continually going over it. And I think her reference and results indicate it can be done. And I let Judy talk maybe a little more detail on what our program actually accomplished.

Judy Goldstein:

Sure. So I, you know, we, we strongly believe, and I think lots of fields, um, comply with this, this, this idea of continuous quality improvement, right? You have to give people feedback to know how to make things better. Um, and so with this program, we felt it was really important to not only notify, um, all subspecialties of ophthalmology, who participated in the program, that their patient may be eligible for service. But also in that vein, we provided monthly reports to tell them how many times did you have a patient who met the criteria of the patients who met your, of the patients who met the criteria? How many people did you recommend service for, and of those people that you recommended service for? How many of them actually got connected to care act, how many actually showed up for care? And this was an observational study.

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So we didn't do things like intervene, right? We didn't call the patient and say, Hey, your physician referred you. We were just trying to look at the, sort of the natural history, I guess I would call it of what happens to the patient when you have some type of advisory. And what we tried to do was use some of the existing standards that in play are in place. The American Academy of ophthalmology several years ago, came out with the preferred practice guidelines, which essentially said for any patient, a worse than 20, 40 best corrected in their better seeing eye, those patients should be considered candidates for education, rehabilitation, referral. You know, it's sort of varied, but anybody who is probably worse than 2040 best corrected could potentially be having difficulties with their function. And the same thing holds true with certain diagnoses. And so what we chose to do was use this 20, 40 cutoff as part of our pilot project.

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And, um, what we observed was probably only on the order of about 15% of patients who met the acuity criteria and also a diagnosis. We only found about 15% of patients, um, were recommended for service. Um, and about another 14, 15% were, um, thought to already be under care. But somewhere around 70% of patients were not referred. And this may be very legitimate. Maybe these patients don't technically have need for service. Maybe they're functioning fine. Maybe they have other comorbidities that preclude them from benefiting from rehabilitation as their ophthalmologist feels. But one of the things we know from some of the prior work done out of Hopkins out of Wilmer and our group is that even low vision specialists are no better at chance of predicting success in patient's rehabilitation, um, progress.

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So if you ask a low vision specialist, what's the likelihood that their patient is going to succeed as part of the process. Once they've seen them again, no better than chance. So if we, as low vision specialists, can't predict, I don't think we can reliably ask ophthalmologists to do the same. So what we feel that we've sort of calculated as some sort of baseline metric of how many patients are being recommended for service, when you know, they meet a certain criteria and then of those, how many actually come. And what we observed in during the time of the pilot was just under about 40% of patients actually came for care. So now what we can do is overly additional interventions, right? We can call, we can continue this for a longer range plan. We can expand this to beyond 15 physicians, but, um, medical care is complicated.

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Physicians are busy. Um, patients have a lot of need. And I think that we have to be realistic in our expectations about what we're asking busy clinicians who are managing difficult ocular disease, um, to do. And when they're busy dealing with drops and laser and medicine and surgery, um, it often doesn't leave time to leave these other conversations or to have these other conversations with patients. So if we can remind them, I think that would be a big step forward in the field. Um, and with the advent of electronic health records, it seems, um, sort of some low hanging fruit.

Craig Meador:

It's obvious we have some gaps. You've both alluded to some of this. We have a gap between, uh, uh, the connection of care. We have a gap between research and treatment. And I think there, I definitely have seen this from education. Sometimes there is a gap between research and practice. Um, and you may can speak to several other gaps that you see that are keeping you guys up at night, but how do we start to close those gaps? I mean, you can pick any one of them or you can, uh, address all of them, but if you've got some ideas, how do we start to close some of those gaps? So that, uh, so that most current research is, is, is being tied. Uh, so, uh, whether that be education or rehab that, that we're actually making sure our practices are, are following what we know to be true and what we know to be proven in best.

Jim Deremeik:

Well, I'll start this discussion because we've had this discussion many a day in the clinic, two areas to add to your laundry list of concerns are one funding and two talent pool, the human resource section. What we're doing with some of the research is trying to address that. So as a transfer to the practical application, I'll give you an example. One of the concerns specific to the older population is a limited number of appropriately trained service providers to do the service. We're seeing a shrinking pool right now with people that are coming out, interested in human services, and those that are, are not qualified. So one of the programs that we actually instituted was using Alliance and we referred to it as lover net, where we use lines, who had an interest in vision were in the community and provided training to them in the area of vision and working with this population and to provide service.

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Judy alluded to some of the work that we're doing by on the phone, doing questionnaires, providing a history for the low-vision exam. We were also working with them to go in a and do very basic practical environmental modifications, not to take the place of a trained rehab professional, but the compliment and add to the existing service providers. So, as an example, somebody might have a moderate vision loss say 2040 to 2080, 2100, that needs proper position of a lighting or needs some help putting batteries in a magnifier. They are the point of contact that go out on onsite and do it. We've set up programs to address that just as an example, because this is becoming a recurring problem for us. We've also set up a, um, program at Hopkins where we're calling emerging leaders in low vision rehabilitation, where we've targeted third year, optometry students inviting them to come out, uh, for a two day stay and shadow with a low vision clinic to get their interest in low vision.

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So on a professional side, we can get more people involved in providing the clinical care that we've been able to do through sponsorship of one of the vendors session box been kind enough to do it. And we've had two years of experience doing that, where to our surprise and encouragement the response was overwhelming. And the intent was if these people are interested in it, the pursue a career in this, or if extremely interested, they might consider coming for a low vision fellowship. So that's one of the areas that we're addressing right now, the, uh, the, the manpower shortage, trying to be creative in our day to day function, another area. And I'd be remiss if we didn't bring this up, um, is funding for low vision rehabilitation up until the mid nineties that wasn't really covered. We wrote white papers that were published in the journal, vision rehabilitation, doing documentation.

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So that low vision rehabilitation would be compared to rehabilitation medicine. So for the first time under the vocational model, a lot of these services were covered. Short-lived though a B, but at least we had a precedent right now, the services that are covered are by licensed folks. And this is a misnomer. We just need to make that clear services for low vision rehabilitation are covered by occupational therapists, physical therapists and speech language pathologist, because the license, if they're providing it in training, most folks we will work with. We'll do the appropriate training and vocational area where the O and M the rehab teaching traditionally are not funded through insurance and Medicare. So we're looking at efforts trying to show the outcome, the impact of the service specifically to O&M, where there's justification to go back and say, these folks with the appropriate service are traveling safely in your environment so that we have a case to build, to show that this data that support the profession, the other area that has, um, gotten a lot of interest is low vision devices and reimbursement. They are specifically excluded by law by Medicare being reimbursed. So what we're trying to do again, is to go back and set up a case with some actual science and data to show. This is the impact that these devices have made and keep keeping people safe, independent in our home environment and leading to their independence. But up to this point, it's all been hearsay. There hasn't been the outcome study or the documentation to justify the cost I get Judy could add to it from here.

Judy Goldstein:

I'll just add to that manpower shortage issue. Um, and part of that manpower shortage, um, as it relates to the economics, is that many people don't want to go into the field of low vision rehabilitation because it's not reasonably reimbursed when we're in a situation where we're caring for patients, and it takes an hour, um, to really evaluate and consider treatment options for the patient. And it's reimbursed at a level that really is an impossibility to, to manage. Um, it, it dissuades people from going into the field because they worry about things like student debt loans and such. Um, what may be promising on the horizon is that there is some buzz that, uh, Medicare January 20, 20, 2021 is going to begin to change their payment procedures, such that time-based payment, um, is really reflective of an increase essentially for, um, subspecialties such as low vision neurology, neuro ophthalmology, um, and those kinds of fields that Medicare is going to begin to reflect the time-based treatment.

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We can currently build based upon time, but the incentive, um, or I should say the reimbursement of that time currently really isn't adequate. So, um, you know, there is some possibility that we're going to see some changes in that field, um, that people will say, okay, I can reasonably go into this field and pay off my student debt and make a living. Um, I think that precludes a lot of people from maybe taking on that additional year of fellowship or that additional year of training. Um, I agree wholeheartedly with Jim is talking about in regards to the visual system equipment, you know, currently we are able to evaluate the patient, um, but when it's time to treat them and provide visual assistant equipment, um, that's really just not available. And we don't see that in physical medicine and rehabilitation when a patient has a hip fracture or a fall, uh, that Walker or that cane is covered by Medicare.

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It really is in many ways, people have called us sort of discriminatory, right? So against people with vision impairments, we really do need to fix that. And that's obviously going to have to happen, you know, at a federal level. Um, so, so we hope that, and that's a gap that absolutely has to be closed. Um, and, and the other area that I would mention is this sort of universality of the standards for delivery of practice, right. We know that there are now standards for referral for care, and we're working to try to Institute, um, you know, procedures to emphasize that referral, um, through like the electronic health record. But what about, you know, the standards for the examination and the people who are doing that? And so, um, in some prior work, um, we began to develop some of these standards, you know, what constitutes a basic low vision examination, what constitutes a complex, low vision examination, what should be done?

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And what do you do with the findings that you obtain? The optometry schools have taken a real, uh, lead in this area, um, in developing their curriculum. And we've done so recently, even with our fellowship curriculum, making sure that every fellow has similar or the same type of experience, the same type of exposure, uh, that the prior fellow does, right. It's consistency and training is critical. Um, so those gaps in, um, the care, um, have to be closed as well. Uh, so I, you know, I'm, I'm fairly optimistic that these things will come with time. Um, it's a relatively young field, but we certainly, um, although we are quite advanced, maybe on the outcome side compared to some other fields and rehabilitation, we're certainly not on that same playing field when it comes to reimbursement

Craig Meador:

Yeah. You, you know, especially in this, uh, I think we're all familiar with the 15 minute incremental medical model, uh, which seems to reward, uh, an efficiency of practice of pushing people in and pushing people out. And we know that that's just not our, that's not our customer base. That's not our consumers, that's not the patients we work with. They, they, it takes time to arrive at conclusions and to fully educate and train. That's a, that's a shame, but, uh, that's, that's a bug bites us all, um, resources, uh, once again, you know, realizing that most of our audience that will listen to this are probably more in the education and rehab field as opposed to, to medical. Um, and I, I think so many times the great work that's being done at, at, uh, Wilmer as well as, uh, other, uh, programs like Wilmer that information isn't, I would say, and I could be wrong here. So I'm speaking for the field. So if I get some hate mail and fully able to take that on and, and apologize in advance for that, but I don't believe that all of us are, uh, accessing or having easy access to the findings and the research that's being done say at a Wilmer, is there an easy way, what's the easiest way for us to access that as practice petitioners of, of education and rehab?

Jim Deremeik:

I think that topic is one we've come to realize, and we're reaching out to try to partner with other organizations to make some of this information available and accessible. I know APH has made a move to set up their hub and, you know, uh, get some of this information and we're pursuing work with organizations such as yourself, as well as making some of the findings that we have more available to the general public. We probably have done a poor job in getting outside our traditional audiences. And we're realizing that now, as we're finding more and more, uh, effort to reach out beyond the traditional providers to get this information in the proper hands. So I think there's a concerted effort to go out of our comfort zone and get out of the box and to make this information available in different formats, in different agencies that we traditionally probably have not looked

Judy Goldstein:

I know that we've also been trying hard to get out to, um, the local community, but even on a national level, talking at meetings that we wouldn't have traditionally gone to. So we had meetings that, you know, maybe are not medically driven, but more rehab teaching driven. Um, and for example, last year I attended a conference that really sort of opened my eyes. It was filled with, uh, people from state agencies, vocational rehabilitation agencies, and, you know, it was eyeopening for me because, um, you know, oftentimes we're all in our own little bubble and it's really hard to get outside of that and see, you know, what, what goes on. I think that there are real, we really lack in the communication systems. So I think a great example in a place that we've really struggled is, um, youth with vision impairment in the school system.

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So specifically writing reports, uh, regarding IEP or 504s, or, you know, whatever it is. And, you know, we'll go ahead and we'll put that information out there. And then it's incumbent upon the parent to sort of push through these recommendations or discuss these recommendations, but there often isn't time the community often isn't the communication between the school system. And, um, for us, let's say at Wilmer. Um, and so I think that, you know, as the educational system changes, um, and perhaps looks at ways to bring in some of this additional information that comes to them and have maybe honestly, um, more honest discussions about what's needed by, um, kids in their educational system, or even in the vocational rehabilitation system. I think it will improve, but historically there have been, I think, some dividers, um, that exists. And I don't think these are intentional. I think that we often, as I mentioned, get caught in our own little bubble and, um, everybody's very busy and it's hard to always communicate, um, that's in the best interest of that individual in need. Uh, so hope that that improves With time.

Craig Meador:

I hope this doesn't sound like I'm putting this all back on, but the medical community to get a set of information, cause we have a responsibility, uh, to, to ask the questions and to reach out and do the digging through the medical journals to find out what's what's going on. Um, I, you know, I had one wish for everybody and this may not even be something that's open to everybody because it may just overwhelm Wilmer, but you know, it just having that chance to visit there and walk and be invited into, uh, research labs to see the work that is happening. Uh, I mean, I just, that was just beyond eye opening and then to have the conversation that we did at lunch, where we were able to just all sit around and swap stories and, and, and hear the latest greatest, it was, it was very uplifting. Uh, it gives me a lot of hope for the field and, uh, it, I think it always does a heart good. When you realize that you are, you are on a similar mission with many other amazing professionals that are doing some incredible work and have given their life and dedicated their have a passion for, for the spiel that the work that still needs to be done. So it's, it's been good. So listening audience, if you haven't been to Wilmer, if nothing else get up there and, and, uh, when, when we're able to, I know COVID right now, has everything pretty much shut down, but hopefully it will come a time when those doors will be open and you can get a tour and talk to the folks that are up there. Um, lot of topics today, like I said, we could, we could do multiple podcasts. Maybe we'll revisit some of these in the future, but just trying to wrap up and be respective of everyone's time, Judy or Jim, if there's any, any last thoughts or any last comments you'd like to make, uh, to our audience, I give the floor yield before to you at this time?

Jim Deremeik:

Well, we appreciate the opportunity to share some of our work, uh, with the folks at APH and put it out to a larger audience. And I think you are doing one of the things that addresses one of the issues that you raise as the gap. One of the concerns I see in the field overall is a lack of leadership, uh, in terms of direction. And I think some of these efforts such as this podcast, some of the movements that you've done with Vision Aware and Family Connect and reaching out to community are what's needed and getting pissed, territorial control to make, uh, open access to all areas, information in any way we can help with that. You know, we commend you on the effort

Judy Goldstein:

I echo Jim's sentiments. Um, and also want to add that, you know, many institutes and many academic medical centers are really doing important work in the field of vision loss, vision rehabilitation, both for storage strategies and rehabilitation strategies. Um, and as we move ahead, I think that it's going to be very important for us to critically examine or continue to critically examine the work that we're doing in the field that we stay focused on our true mission of improving visual ability in patients and their function in their everyday lives. Um, and so, you know, that commitment not only needs to continue, but we really need to take a hard look, um, as we have been, um, in the way that care is delivered and we need to continue to improve it. Um, we have seen a tremendous shift in the type of patients who seek care with vision loss, especially in the older adult population.

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We've gone from really more severe and profound vision loss to a more mild and moderate loss and in the aging population, um, we can't emphasize enough, um, what healthy aging looks like, and it's people being engaged both physically, emotionally and cognitively in their everyday activities and vision rehabilitation professionals are such a critical part of making that happen. So, you know, I look forward to continuing to improve this, and I'm very grateful to APH and other organizations like APH, you know, have been really instrumental in making sure that these missions and, and, and the voices heard, um, really to be advocates for people with vision loss.

Craig Meador:

Well, we appreciate it. The both of you taking the time today, uh, to, uh, provide us with, uh, just some really exciting things that are going on as well as just, I guess if nothing else I said, I said earlier, it takes some solace knowing that we share some of the very same struggles and, uh, we are all pulling together in a common direction trying to achieve the very same thing. So, um, for our listening audience, and it's our hope that, uh, the future of APH is that, uh, as to highlight a lot of the work being done at Wilmer, uh, through, through the Connect Center and through other aspects of, uh, APH media, because we, we believe this is important stuff that will not only make you a better practitioner of the work you do, but will inform your practice. And we'll also provide, uh, hopefully some hope and some direction for families and for the, the people you serve.

Jim Deremeik:

Thank you.

Judy Goldstein:

Thank you.

Jonathan Wahl:

Thank you, Greg, Jim and Judy for taking the time to be on Change Makers today, we appreciate everything you do. That's it for today's episode. Be sure to look for ways you can be a Change Maker this week.