Bonnielin Swenor, Ph.D., M.P.H., presents at the Johns Hopkins Department of PM&R’s Grand Rounds on July 28, 2021.
All right, thank you so much. I'm really excited to be speaking with you all today. Um Thank you for that wonderful introduction. Um I have no disclosures. Uh the objectives of my talk are to review definitions of disability, which is probably going to be a bit of a boar for this group um to talk about the inequities for the disability community, including how we can't neglect in the time of Covid 19. The impact of Covid 19 on those inequities talk about the importance of prioritizing the inclusion of people with disabilities um in research and medicine and I will talk a little bit about including people with disabilities as researchers and as physicians, clinical staff. Um and talk about the goals and initiatives at my center, the disability Health research center at johns Hopkins. So what is disability? So if you ask 100 people this question, you'll certainly get 100 different answers. I think you'll probably understand that well. We have multiple definitions and that's the beauty actually of disability and the disability community. We have a by design flexible definition to allow lots of people into our community. Um so I'm just going to give a few examples to set the scene, which I'm sure are not new to you. All the CDC defines disability as any condition of the body or mind that makes it more difficult for the person to do certain activities interact and interact with the world around them. But the americans with disabilities act, which we'll talk about in a little bit. Um there's a physical defines disability as a physical or mental impairment that substantially limits one or more major life activity and then the World Health Organization similarly defines disability as something that arises from the interaction of health conditions with the environment and personal factors, similar veins, all slightly different language. There's positives and negatives to our flexibility and how we define disability and that's going to become important as I continue this discussion. But I think it's also really important to before I go further in this talk to understand that disability is and has been really an evolving concept. There is an important shift, particularly among the disability community to drive from a medical model where disability is defined as the presence of an impairment and functioning or body structure to a social model where disability is viewed in a as a as a social construct. It considers the person's identity and the environment in which they live. So this shift um has really been driven by the disability social justice movement. So I want to pause here and make sure it's clear that there is a separation and disability rights and disability social justice and the movement. The forefront really is towards a social justice model and not just about right. So I'll come back to that again in a minute, Disability is common. Thank you all certainly understand that as well. One in four American adults has a disability that's 26% of our population. Again, this scene setting, I give this and lots of talks. I won't go into these details. But what I'm showing on this slide is a bar graph of the some broad care categories of disability. This is data from the B. R. F. S. S. Um survey and how they characterize disability and disability impacts everyone in our communities. Disability is often referred to as the only minority group that anyone can join at any time. And that's important to consider. So historically, and I always pay attention when, when um particularly as the ADa anniversary was just on monday the 31st anniversary, I pay attention to the language people use. And so classically the language around disability has been framed in one of equality. So equality is where everyone gets the same thing, but the movement is towards equity and equity is where people get what works best for them. Um, and I think that's a really important yet nuanced perspective. Equality for the disability community is perhaps not the bar to be set, but equity is probably the goal that we need to achieve. So the question is, how do we achieve equity for people with disabilities, making sure that everybody gets what they need to have an equal shot or fair shot at success in life. Right? So what I'm showing on this slide, Well actually we go back for a second, I have to give credit, where credit is due. This is a slide and of, from the robert wood johnson foundation and I should have acknowledged that on this slide. Um I'm showing a bank of elevators stairs and so I'm just going to pause for a second and just share what I do this work. Um So I have a disability myself. I'm visually impaired. Um I'm primary in the primary appointment is actually in the ophthalmology department and that's part of why I've landed where I have. Um So this this bank of elevators stairs is actually where my journey with disability actually began. Um I started losing my vision in 2000 and five on those exact stairs. Still a little sometimes hard to talk about. Um This is metro steps in D. C. Or metro elevator bank in D. C. So I was on my way to work and I just had a drastic sudden change in my vision and was subsequently diagnosed with a degenerative retinal disease. And I've been losing my vision quite honestly ever since then I had just applied to graduate school about two weeks before that happened to MPH programs. And so it was challenging. Um time I guess are a challenge in that period of life. And um I think it's it's just important to understand it's the reason I'm doing this work and the scope and the lens that I bring to it because I don't think that lens is always included the lens of first person account. The person bringing their perspective to the research. I'll come back to that at the end of this talk as well. So I do want to pause again and bring it back to the A. D. A. So the A. D. A. We just celebrated the 31st anniversary as I just described on monday. So, um, the americans with disabilities act in the disability community and my community is really a true celebration and it's a time of reflection. Um, I want to acknowledge that President biden denoted this the importance of that day on monday by recognizing that day through a proclamation. Um, I'll also note and I'm sure everyone uh in in this department is aware of this, that there was guidance issued on that day to include long covid to fall under the protections of the A. D. A. So the idea has five titles related to employment, state and local government, public accommodations and commercial facilities communication and 1/5 title that includes miscellaneous areas. Um, but this law translates to having impact across five sectors. And that's what I'm showing on this slide. Employment education, health care, transportation and the built environment and civic uh, and and social engagement. So, a question I often ask myself is, is the A. D. A. Working, so what does this have to do with all the things you're doing? What does this have to do with health equity? Well as a person with this lived experience. These laws and policies impact every day of people's lives of your patients lives. And so it's important to think about the place they have and the impact they have on health and access to care in either promoting that or sometimes inhibiting that. So we know that there are deep health disparities that despite over 30 years since the A. D. A. Still remain. So what on this side I'm showing really is an important study um from 2015 documenting the health disparities for people with disabilities, people disabilities are more likely to smoke less likely to get engaged in physical activity, more likely to have cardiovascular disease and be obese um are more likely to not receive health care due to costs less likely for women with disabilities to get mammograms and less likely to uh for women to receive pap tests, pap smears globally. This is also the case. People with disabilities are twice as likely to find health care to have healthcare providers skills or report that their skills are and facilities are inadequate are three times more likely to be denied health care services and four times more likely to report maltreatment or mistreatment in a healthcare setting. And all of this really has um come to the forefront these discussions around how people with disabilities have access to um and again, going back to should equal access versus equitable access in healthcare, which is so critical for maximizing a person with the disabilities um Uh huh health inclusion and equity outside of a health care setting. So is the A. D. A really working right, is this really working and I'm going to focus on just for a minute on on the healthcare sector here. So a very good friend, colleague and mentor and quite honestly an icon in this space, lisa Azzoni, who I'm picturing here has written a lot of has done a lot of landmark research in this space. So a decade ago she wrote a really important paper titled eliminating health and healthcare disparities among the growing population of people with disabilities. And I'm just going to read a quote she talks about beyond survey data. Little information is available to explore disparities among people with disabilities. So what at least it talks about in this paper is that part of the reason that we haven't addressed some of the disparities for the disability population is there is really critical data limitations for us to identify track and address those disparities. Also, I'll go back to this in uh light of COVID-19 but the short story is we haven't changed much. So just recently lisa again a decade later, um published another study in health affairs called physicians perceptions of people with disabilities in their health care. So what lisa has done over the past decade is just one of the many things she has done is um create a survey of of the way that positions are perceiving people with disabilities and health care settings and I recently had actually an opportunity to talk with lisa Um in detail about this study. Uh my center has a podcast and she was recently a guest on that podcast and we talked about her results which show that 82% of physicians reported that they believe that people with disabilities have significantly worse quality of life than people without. And so in talking this result through to her or through with her, you know, this really hit home to me. So what this survey basically was asking is is very clearly how do you perceive your patients with disabilities? Do you perceive them as having more quality of life? She truly anticipated there would be some response bias, meaning there would be some pressure to respond in a social pressure sort of way to give the um a response that maybe she thought would be appropriate to the disability community and that really wasn't the case, which is I think extra important to consider. Right? So so her take on this data was clear, it's that not only is there this disparity in the viewpoint of quality of life, but that many individuals in caring for people with disabilities feel very okay with this viewpoint and that really remains a problem. You know, she shared a story with me about in her qualitative work, some of the physicians disclosed that um you know, they didn't have scales for their patients in wheelchairs and they told them to go to the local meat packer to get weighed and they had no problem with making that recommendation. As someone from the disability community who worked closely with the disability community, I assure you as many of you know, well probably one of the the best departments to be having this conversation with people with disabilities don't view their lives largely as having low quality. Now that's not always the case. It's a heterogeneous group, but the hope is to be able to have these nuanced discussions and not overlay these stereotypes for the disability community. So is the idea of working and I just want you to think about some questions and what you know about this population. So are there gaps in health care access for people with disabilities? If so, do we know? Where do healthcare outcomes differ, including by safety quality and satisfaction by a patient's disability status? Do these data differ across intersecting identities? That's critical to think about. It's a black disabled woman's experience stiffer than a white man who has a disability in a healthcare setting. Do we even know what percentage of our patients have a disability? So for most of these these questions, we actually really don't know the answer and that's part of the problem getting back to this question of data that lisa has been raising? Um many of us have been raising for quite some time, disability information is routinely not being collected um in a standardized way in healthcare encounters. This may not seem like the biggest deal, but it has prohibited our ability to advance equity to improve health care and to most likely care for patients in a tailored way that perhaps um is really where we need to be going to two best uphold those tenants of the A. D. A. So I'm going to shift for a minute. That was a lot to digest admittedly um and and think about what all of this means across the landscape of COVID-19 so early in the covid 19 pandemic um you know, as I have disclosed of my own disability, I I felt sick so early on this was March. It's hard to remember what year it is, March 2020 and when I called to to um to get a test. So you know, we've come a long way but um this was early times, you know, not a lot known hard to get a test. I was told to go through a drive through test site and I laughed right, I can't drive anymore because of my vision loss and so that was just not gonna work. That wasn't gonna be an option. And it made me very early on think very deeply and personally around how the disability community was going to be and was being impacted deferentially by COVID-19. I wrote this article in stat news of course as an epidemiologist and as someone that thinks about data and is interested in linking this to the policies being rolled out. That's this perspectives piece that I wrote. And so in summary, you know what what was going on and honestly what is still going on is we saw really critical gaps um for the community. We saw that there were um gaps and accessibility that still hold today. Um but even in that early part of the pandemic, it became obvious this was going to be a huge barrier. So there's inaccessible COVID-19 information. So this goes from um information on websites that can be inaccessible for not just people with vision impairments and who are blind but also people with cognitive and executive functioning disabilities that may need uh plain plain language summaries. Um there's an accessibility in um videos that are captioned or in press conferences that either aren't projected and have captioning or have a sl interpreters and in high risk situations like during the pandemic. This is critical information that puts people with disabilities at a huge disadvantage. There's there has been and remains barriers to getting testing and vaccine for people with disabilities. I mean not just in the United States, but honestly around the world, those barriers still hold physical barriers, barriers um in registering for vaccines. Again, inaccessible websites um the list really goes on and on And there has been and remains as we're approaching what unfortunately seems to be another wave of COVID-19 a differential impact of the social measures put in place. So a story I often share. And again, I'm very tilted towards um, the blind and low vision experience as someone who's blind going to the grocery store at this time may not be able to know if those around them have a mask on or not, May not be able to determine if they are six ft from others. That is a differential impact to make change the ways they can go to get food, go to a doctor's appointment to be able to go back to work. We're not often thinking about these things. So disability data limitations, which to me really is one of the important sources and triggers for change at this time, um, has is really important to think about So commonly when I get contacted about COVID-19 people want to talk about congregate care and nursing homes And you know, by definition those include people with disabilities are really important to think about, you know, at the peak in the fall the past fall, 40% of of of covid related mortalities were occurring in those settings. Um, but that is a small fraction of the population of people disabilities in this country because we don't have robust disability data, including a standardized approach to collecting information on disability during medical encounters. So what I mean by that is we're not asking people about disability information like we're asking about age or gender identity, race and ethnicity. We don't even have an opportunity to track covid um, or to identify vaccine rates in this population. And so if people in this group are um, perhaps differentially impacted and arguably um at greater risk and there's some data for some groups to show that this perhaps is really critical information to know and understand. We just don't have it. Um, so there there's in addition gaps across disability groups, the data that we do have their has largely been reliant um are come from the intellectual and developmental disability groups are um set of individuals with disabilities. There's lots of historical reasons we have access to some of that data. Some of it is because many of those individuals live in congregate care settings. Some of it is because there are certain funding streams to support that line of of research quite quite honestly. But just because we don't have the data on other groups and other types of disabilities does not mean that risk does not exist. We simply just don't know. So because of these gaps in accessibility and in data, the pandemic response has not fully reached the disability community. But what we have seen is that the inequities that have been historically impacting the disability community have only been magnified. Um it's important to think about this because I think what we are learning and continuing to understand is that the health of one individual really impacts the health of our communities and vice versa and since over a quarter of our population has a disability and quite honestly as an epidemiologist, I can tell you that's an underestimate. Um this is an important group to consider. So these inequities have largely persisted over time and you know, being concerned about the gaps in data and seeing the inequities um move forward. My center was constantly thinking about what we could do and how we could rise to this occasion. And so what we did is we created the COVID-19 vaccine dashboard for people with disabilities. I'm immensely grateful and have to acknowledge the american association of people with disabilities who funded this project. Um and so what what this did is um We tracked data starting out with prioritization and then moving to accessibility of information around Covid 19 from health dot help from health department websites um across 50 states, the District of Columbia and five U. S. Territories. We updated this information weekly and we prioritize the accessibility of our own dashboard, recognizing the barriers that we did not want to perpetuate. So our first dashboard was focused on prioritization and we work closely with the Center for Dignity and Health Care for people with disabilities. And we tracked the prioritization schemes For four or 5 groups and we actually added 1/5 which we'll talk about in a minute. That included what I'm showing on the screen, which are people who lived in long term care and nursing home settings. Um people who lived in other congregate care settings, People with chronic conditions. A group we called other disability groups which included people living in the community who are receiving direct support services, people with intellectual and developmental disabilities. Those were oftentimes called out separately in the rollout plans of states because of the availability of data quite honestly. And recipients of certain Medicaid programs, we did eventually add 1/5 category which was caregivers of people. Well caregivers really were mostly defined as people just for people with disabilities not included formal and informal caregivers. So I'm showing on the slide a snapshot of what our dashboard when part of our dashboard looked like. So this just was the first state. We showed it alphabetically. Um, for Alabama we were tracking the current phase, the phase of um, of each of those categories and then the definitions as each state was defining it. Each state used slightly different definitions. We then synthesize this information. We used two approaches to visualizing data to allow flexibility and increase the um accessibility of content. We also had a text on all of our images. So we showed information in a map in maps and then also in bar graphs. This is old data. So obviously this is um, you know, vaccine access is open to all at this point, all adults. So our second dashboard Focused on accessibility of information related to the COVID-19 vaccine and then accessibility of vaccine registration websites. So for this, we partnered with a great group called Web came out of Utah and they have an algorithm and really are the experts in analyzing accessibility of virtual content. So we developed an algorithm with them to be able to, to compare in a head to head way the accessibility of websites against each other. We gotta score. And then we ranked those websites dashboard, I'm showing up here, showed the overall accessibility score ranking and then we provided the or else so people could navigate directly to those websites. Um, so as I indicated we were scoring vaccine information websites as well as registration websites and similar to our other dashboard. We showed that information in a flexible way without text um using maps and bar graphs and that's what I'm showing there. So ah We launched our initial dashboard on prioritization on February 8, 2021. You know, this admittedly wasn't part motivated by an outstanding student, an undergraduate student that I was working with. Sabrina Epstein, who had noted that there was a discrepancy in the vaccine prioritization across states as she was trying to register her grandfather for vaccine, I had um, I don't need, I don't know what my expectations are were for the project, but they certainly were exceeded. Um, so we've now ended this project. We ended our prioritization on April 12 and the accessibility dashboard on May 19 But a day after actually less than 24 hours after we launched our first dashboard, the National council on disability, which um advises president biden on disability policy cited our dashboard in a petition to the National Governors Association calling for them to Reprioritize ties or up wait the prioritization of people with disabilities in their vaccine rollout. That was honestly surprised. Um, since that time our dashboard has been cited by local state and national advocacy groups. I honestly admit I've lost track at its peak. We had more than 2000 dashboard unique dashboard visits per day. Obviously that's down now since we've sunset in the project. Um, I'm really grateful that for all the great um, press, we got to help get the word out. Um, we were in the Washington post, new york Times Political Wall Street Journal and NBC news the little the lily for those of you familiar with that. Um, did a really great piece just about our project. And most recently we were in Time magazine. I'm also really grateful because our project was invited to be discussed and we did uh discuss care of errors from my partner from the Center for Dignity and Health Care for people with disabilities presented our work at the biden Harris Covid 19 Health Equity Task Force meeting. Um, and I also provided comments um, are our dashboard was also part of a special issue in Lancet Public health last month. And um, we published our first paper on the dashboard and then I wrote an invited commentary sort of related to that calling for um disability to be included in all health equity efforts in the wake of COVID-19. So if you want to learn more, you can check out those papers. We additionally were at the same time conducting some qualitative work on the impact of COVID-19 um for people across the United States and I'm really proud this was largely run by undergraduate students. Um well almost entirely was and I'm really proud of the great work they did. So we conducted focus group interviews um and included six disability groups and we cast a fairly wide net through through our connections through disability rights, justice and advocacy groups and what we found um were three large themes that will quickly go over Is that people were reporting in the wake of COVID-19, they were experiencing new problems. And so this is one quote that actually the journal put out this info Graham, so I'm borrowing it from them from our paper. Um I've seen COVID-19 press conferences that had no sign language interpreter or broadcast like cable access channels that have no closed captioning. So the sentiment around this is that yeah, COVID-19 has layered on some additional barriers. Again, high sticks barriers for the disability community. There were also themes around obstacles and daily lights. So this quote says we need a backup system for home health workers because if they come down with the virus. What are we supposed to do? And I think what this quote underscores is the types of concerns and the differential impact again of COVID-19 for people with disabilities. And the third theme was that there were broader, broader changes to accessibility and disability identity occurring right now. So the pandemic is simulating to the non disabled world what it's like to be disabled and live with a disability, live with isolation, live with all the routine disruption, anxiety. Um this really was was an interesting quote and honestly it's a sentiment I hear a lot from the disability community and there's a lot of discussion right now for some people that have been appreciative of the flexibility and the global experience. Um and we will see if that holds as we quote and quote, go back to normal if and when that happens. Um so there has been really important response again as someone that is interested in the arc of this work to translate to policy. Uh there's been an interesting response from the federal government. So in in response to some of our work as well as many others. Um there was expanded access to COVID-19. There was a focus on expanding access to the vaccine for older adults and people with disabilities and infusion of $100 million in grants to achieve that. Um there was a note, a recognition that there was challenges in scheduling vaccine appointments and getting transportation to vaccine sites. Um a need for direct services uh to help people get to appointments and sometimes assist them through the appointment process connecting people to in home vaccine options. That was allowed a statement from the disability community and education tailored to this community. Often from people from from the community lessons we've learned from other groups on the importance of receiving the vaccine. Another really important federal response that happened came from OcR the office of Civil rights and they gave very strong guidance of the strongest in the disability space they've given in awhile around the the protection of people with disabilities in in the vaccine response. So they were very focused on in prohibiting discrimination. Um in the vaccine rollout ensuring there were reasonable modifications during the process ensuring there was effective communication and program accessibility. So think back to those tenants of the A. D. A. I spoke about OcR was calling us strongly as they could with the guidance they were offering to um two back to those a. d. a tenants to try to ensure equity, right? Not not equality equity in the vaccine rollout for the disability community. So I'm frequently asked about what are the lessons that we've learned from the work we've done and our interaction with the community and what are the best practices and when I talk about this and think about this, I'm trying to frame it in a way um to move forward. Right? And I think that's part of our new marketing for for Hopkins medicine and what can we learn from this to take with us Even past Covid 19, the first thing is to partner with the disability community, this is very clear the states that we saw that we're prioritizing people disabilities and their approaches and in the vaccine rollout had clear channels of communication with the disability community and sometimes oftentimes have people with disabilities in leadership roles are in key partnering roles. So not just as partners but as key players in shaping the process and the policies. The second is about prioritizing accessibility. Hopefully, and so many people from the disability community are hopeful for this. That accessibility and all the things we do will no longer be an afterthought, it will be baked in from the front and that comes from websites. Physical space is the language that we use to create a more accessible and inclusive culture. There is an important shift right now from individual accommodations will still always be there, but a focus on universal design designing the world for everyone. And we are hopeful that COVID-19 has taught the world the importance of that and that's needed really to to achieve this goal of equity and to collect disability data. We need this data to identify track intervene um, to to advance equity for the disability community. You know, it is not by happenstance that disability data has not been included in a lot of the spaces and public health systems and even in the health care system in the ways that perhaps other groups have not been included and, you know, the disability justice movement lags behind those other movements, but I think right now is a critical moment and now is the time. And so the data well, isn't everything certainly is going to be critical for continuing to push this change forward. So I'm going to make one last pivot and then um um I think there will be time for questions and it's related to that last to that last slide around, you know, how to move forward with change and to me when I think a lot about this and talking to this department and the roles that we have and and our opportunities. It's not just in our research and our advocacy, it's also in who we're including in our spaces and to think more broadly than just people disabilities as your patients and people in the community, but are people among us. I think we are also learning at this time how important perspective matters So. On this side, I'm showing two people standing on the other side each side of a number of one season 61, season nine, and it's this idea that we all approach our data question research from different perspectives and see really different things and hopefully that makes for a better world that makes for better science makes medicine better, but disability has largely not been part of that inclusive approach. Um People disabilities are largely underrepresented in both science and medicine. So I'm on this side, what I'm showing is um some results from a study that I worked with a great colleague, lisa Meeks who was at michigan schnell at colorado showing the percentage of U. S. Medical students reporting disabilities. Um and it has increased from 2.7% in 2016 to 4.6% in 2019. So while that increase has been really important and in our paper and general we speculate lots of reasons why that is. I want I want you to reflect on how far that is from the percentage of people in our community with disabilities, right quarter of our population. It's far from that mark uh lisa and this is this is great work from lisa's group that she just published this year. She conducted a survey or she used data from a survey of 7000 physicians. It's a nationally representative sample And only three again sort of mirroring those those estimates in the medical student population reported identified as having a disability again huge underrepresentation. And then on this side I'm showing data from a paper that lisa and I again published and plus one a few years ago. Um And so this is data on NIH grant awardees and applicants who report having a disability across 10 years from 22,008 to 2018. And what we saw is that that percentage declined from 1.9 To 1.2%. So it's abysmal quite honestly, this data is certainly not perfect but indicates we've got a lot of room for improvement. Um, one last I think important paper in this space that I had the opportunity to work on is again lisa meeks and I who is my my partner in all these efforts um wrote a paper perspectives piece in new England Journal called disability inclusion moving beyond mission statements. And um in this paper we really intended to draw out a roadmap of how to include people with disabilities in the biomedical workforce. These are discussions that we have observed largely were not happening. People don't know how to do and that's part of the barrier to why we're not including people. So just this past week, the NIH has made a fairly bold statement around their stance on including people with disabilities and the scientific workforce. I'm really grateful for that. Um they have propped up an advisory committee to advise the director Francis Collins and I will disclose, I'm collating that advisory group and they are, I would say, doubling down on on the recognition that there is work to be done and the value and the importance of that and putting it within their portfolio of um there's power in the people that we include in this space and science and medicine to drive this work forward to advance equity. I also want to just call out that again, President biden took an equally impressive stance in an executive order on diversity equity, inclusion and accessibility in the federal workforce. This is again across the federal landscape, but we will have implications for society banking accessibility as part of D. E. I. Efforts making a clear stance that the disability community needs to be included in all of those spaces. So I'm just going to conclude by saying that including people with disabilities really is necessary to advance health and equity for everyone in our communities. And so when I make that statement, I really mean it's including people with disabilities as partners, as colleagues, including their data and creating environments and strategies to include them in all the things that we're doing. I'm really grateful for for the opportunity to speak to all for all of the work that you're doing. Um I have, I'm not going to show it here, but if you want to learn more about my my center, we have this video, you can learn about our strategic goals and um, you know, briefly our tagline is changing the paradigm from living with a disability to thriving with a disability and I guess check out our podcast. Thank you so much. Yeah. So we have a few minutes for questions if anyone has any so dr spooner. Hi, this is both tires. So yes, you know, we know the concepts you're talking about and and yes, we're familiar with all of these ideas. But what's so incredible about what you're doing is we were seeing it on individual rights and you're actually collecting data in large forms that can influence policy and it does influence parts and and that's an that's an incredible contribution to. You know, we're kind of down at the individual level treating patients and we don't always get a chance to change the structures or the policies and this just collecting these kinds of data is so important. And then of course the step of taking them to incorporate them into policy. So this is just very exciting to hear you talk about well, thanks Bill, I appreciate you so much. And and for you saying that um, you know, I guess I would say that, you know, I think the work you're doing is of equal great importance. You know, I when I think about health care from all the perspectives, I think about it for people with disabilities, you know, as a researcher, as a person who has lived experiences someone employed here. You know, it's so important to understand that there is a social transaction that happens with each healthcare encounter. And I think that steak is really high for people with disabilities, right? We learn something about ourselves whether real or not, whether positive or negative every time we interact with you, right? And I think that, You know, I when I often talk to and you know, I'm not a clinician, but when I often talk to clinicians, they undervalue their role and their impact even on a 1-1 interaction on the impact they have. So you buy the language you use, the way you talk to someone, you know, are particularly for this community, are shaping so much about their own thoughts of identity. You know, there is this perpendicular place of, you know, and I experienced this all the time. You know, I go to a retina specialist who's who's amazing and fantastic, but there's conversations and you know, you think about cures and treatments, but at the same time you're trying to be very okay with who you are and what you are, right? These are deep and hard conversations. So I guess what I'm trying to say is your your role is critical and has huge impact. Those people carry that forward into the world. So, and I think this department plays a huge role. So thank you. Hi dr sweetener. Um my name is pretty Raghavan. I'm the vice chair for research in the department and again, I want to congratulate you on all of the great work you've done. Um I also wonder, you know, we've grappled with this issue of accessibility for our own patients, it's a huge problem and Literature has it that only 30% of those who need rehabilitation services actually get it. And a huge part of it is really accessibility. They're not enough ways that people can get their, you know, they can't drive anymore. They're dependent, all kinds of things. Now, we were very excited about the opening up of telehealth, there's a real option, but clearly for people with visual, you know, for certain disability groups, telehealth is a mixed blessing. And I just wondered what your take was on it and you know, what are the ways in which inaccessibility, it's great that President Biden has made accessibility such an important issue and I'm just wondering what the implications of that are going forward. Mhm. Yeah, great question. Um critical questions. So, thank you for that question. Yeah, telehealth, telehealth certainly feels like and I think it is probably the future for so many situations um spot on. And of course you all recognize this, the the challenges for certain groups, right? Um again, I think that there's opportunity here, you know, if accessibility is baked in, it's not off the table to be inclusive for for people with, you know, sensory disabilities, cognitive disabilities, but it has to be prioritized, there's gotta be money, there's got to be focused, there's got to be research invested in it. It has to be a priority from the start, right? I see that not always happening and that does concern me admittedly, you know, just across the landscape. Um we also equally have to be worried about people that just don't have access to, you know, digital technology. you know, it's it's equitable, both of those conversations have to happen, but I also just share with you that from the disability community, there's still some distrust around telehealth and I think it's an interesting and I've had these conversations lately perspective. So to your point there's lots of people, I mean, regardless of its a sensory disability or not who feel this is, you know, opening so many doors. Such a great option. There's a lot of people and you know, there's hard history here around just medical mistrust in this community that I don't think we always understand or acknowledge in all these spaces, but it's real and it's there who are concerned that telehealth is second rate and they are going to always be siphoned to that because healthcare settings don't want to make accommodations for them. So what they're concerned about is they should be coming in person, but they're too complicated to accommodate. So they're going to be shunted to telehealth. I'm hearing this more and more quite honestly, I think this is something that has to be unpacked understood researched because I am concerned it's going to fuel this medical mistrust. Um I'm not sure I answered all of your questions, apologies, but I think that, you know, the focus does have to be on on accessibility, but also really, again, starting with the community instead of overlaying something that, you know, a bunch of people decided is best for them without talking to the community. I think we've got to start with the community. Thank you, thank you for that insight. You know, this idea of mistrust and that, you know, it's a second auto option. You know, it's something we have to deal with. Yeah. And you know, and I don't think that's always the case, but I think we've got to do, you know, it's not often great work. We've got to do good work to build that trust. Yeah. The question here, I think it's a good question following the whole idea of distrust and how people feel in reporting sometimes. So I wondered how how much of the numbers we see in certain parameters are in part because of mistrust in on the reporting. Um again, it's still a big problem, but it's like um how much how how bad is bad because they're getting sweet if we have people who get for example in science and are not comfortable reporting that that's I think that's as bad of a problem. So you have any insights on that. Yeah, great question. Very insightful question. Right? And so, um you know, and I think about this a lot, So, you know, take my data on the NIH that less than 2% of of awardees report having a disability and I've gotten a lot of pushback based based on, you know, some of the nuance that you described around that is maybe people just don't want to report. And I think what you're digging into is so critical is it's that point that we've got to think about right, we have created a society where people are fearful to report disability status. Are people afraid to report their age, their gender identity, The race Maybe sometimes, but we don't have these discussions with, I mean near the frequency that I get these types of questions around disability and I push back on that. That's what we have to change. I mean, I I agree with you. Yeah, you clearly understand this question. So thank you for asking it. Um, you know, as a as a when you think about the data, there are good ways to ask questions and room for improvement to create a way to enhance people to feel comfortable in responding. But we can't do that in a vacuum. We've got to change this societal perspective that, you know, society really has created this um, that data that, that the reporting for just for anyone that applies for NH grants. That's an era comments separate from your step from grant review study section. Never sees that. But it has been so interesting the way people have viewed that data that I published as as in a very different way. And it is um, in my view an observation of societal perspective. So thank you for that very Yeah. Well the last question being in study section and and actually being in a study section who also has people with disabilities sitting in the team is it certainly is a perspective that we need. Yeah, no, thank you for that doctors. Oh my gosh, hi dr sweetener. Hi, my name is Megan. I am so grateful for your sharing your experience and for all you guys have done during the pandemic. And I'm really excited to see that you're sitting at the table with a biden administration and with Francis Collins. Um I have the perception that there is a large imbalance in the amount of funds and research we dedicate to biomedical research and I'm curious to know if there are any um if there's any hope that we might see an increase in the amount of funding to additional methodologies and other models of health. My perception is that this has been the largest driver of health disparity and poor medical outcomes nationally. Thank you Megan for that amazing question. Um I couldn't agree with you more admittedly. I feel like I fed you, I could have fed you that question, wow this, this department asked really good questions. I'm so excited. Um yes, so you are spot on. Um you know the ah mm hmm. Yeah. You know, there is funding. Right? So for for this, this framework of disability on the social construct is um often shunted to the administration for community living. It goes to nine idler but admittedly there's even just a subset of carve out focused on that. Right? So, so there's that piece at the NIH, this is a struggle because what do you do if you want to look at disability as a health inequity, you either have to carve off a chunk and look at a specific disability type to live within a certain I see or you're in trouble. Right? There is an acknowledgement that there is not a home for disability. So for example, it won't fit under a minority that the IC from minority health, it is not recognized in that I see. Right. Um, so it is a challenge. Um, I will share and you know, for for those of you, uh, fellow policy nerds, there is appropriation language that made this final or this this round, um, as a carve out for disability health equity work for the NIH. And I'm really excited about that. We'll see if that continues and what that that moves forward. So that's in the committee report for those of you that know that kind of kind of space. So, um, we will see fingers crossed if there is change in the landscape, but I do think that it will take a bit more um, advocacy for us to get there and to, you know, this past discussion. Part of the reason is because there has not been seats at the table. There has not been people included with these perspectives in sort of all the places. And, and so part of the reason, I also talked about that executive order is there's a section from biden's Executive Order on what's now being called idea. Um That is saying that all agencies have to including um all agencies have to think about the makeup of their external advisory committees and councils and those are important for helping drive these funding decisions. So I have hope. Um I know that's sort of really in the weeds policy response for you. But I do I have hope that might be a long game. I just want to say thank you for that. You know, as you pointed out, there's the National Center for Medical Rehabilitation Research, but it really lives as part of another. I see we don't even have a home. So we'd love to partner with you in any way, you know, any shape or form to help with advocacy. So if there's something that we can do, we would love to. I appreciate that. I will absolutely take you up on that. Okay, Alright, well it's one o'clock um and I don't see any more hands raised or anything. The chat at this point, I'm sure that if any other questions come up, dr spooner would be happy to answer them via email or other communication, I want to thank you again for this really important um presentation and we're very much excited to continue to collaborate. Um and I hope everyone has a wonderful day. Uh and we'll be joining again in august for our next grand rounds. Thank you so much, Everyone. Thank you so much for having me. Thanks to everyone for taking time. Thank you.
Facebook
Twitter
YouTube
LinkedIn
Instagram
E-News
BROADCASTMED