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Season 1, Episode 2: From Survival to Survivorship, Part II

Framing Traumatic Injury as a Chronic Condition, Part II: Finding Common Language in Our Data

March 13, 2023

Join us for our special 2-part kickoff series inspired by the New England Journal of Medicine article “From Survival to Survivorship – Framing Traumatic Injury as a Chronic Condition.” In this episode, we discuss finding common language in our data.

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Episode Guests

David Estrada, JDDavid Estrada, JD, represents United Spinal Association as a peer mentor, board member, and former executive director of its Greater Boston chapter as well as a national chapter liaison. He is a program manager at the Spaulding New England Regional Spinal Cord Injury Model System and the Exercise for Persons with Disabilities Program. Living with a spinal cord injury and wheelchair user for the past 27 years, he has focused on consumer-led advocacy locally and nationally to promote high quality services for better healthcare management and access to resources for the SCI community. For nearly a decade, Dave was an Athletes with Disabilities Coordinator for the Boston Marathon and continues to promote adaptive sports participation.

Dr. Juan Herrera-Escobar, MD, MPHDr. Juan Herrera-Escobar, MD, MPH, is a physician scientist from Colombia with advanced training in trauma outcomes research methodology. Dr. Herrera-Escobar serves as Research Director in Long Term Outcomes in Trauma at Brigham & Women’s Center for Surgery and Public Health. His academic interests are in studying the long-term physical, mental, and social health consequences of traumatic injuries, as well as in the implementation of trauma registries and trauma systems design. His work has led to several publications on the long-term impact of traumatic injuries and the factors associated with poor outcomes, emphasizing the role of patient and socioeconomic factors in recovery. Some of his projects have shown that, unlike short-term outcomes, long-term outcomes are more closely related to patient factors, such as education or gender, rather than to traditional measures of injury severity. His research has also expanded knowledge in previously understudied fields around long-term trauma outcomes. For example, he has published on how understudied mental health conditions in trauma such as depression and anxiety are as equally disabling as post-traumatic stress disorder and twice as prevalent; and how firearm injury survivors had far worse long-term outcomes when compared to similarly injured survivors of motor-vehicle crashes.

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Shonali Gaudino, OT, Host, Producer, Co-Creator

Vanessa Bartlett, Producer & Sound Engineer

This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).

Transcript of Episode 2

David: (00:00:10) My name is David Estrada. I had a spinal cord injury in 1995. When I was 23 years old, I was riding my motorcycle home from work and was struck by a car in an intersection. I was rendered unconscious and when I came to, I tried getting up but I couldn't and realized that I was paralyzed. I think I was operated on for like six hours, later found out that I had shattered my fourth thoracic vertebrae and pieces of the bone went into my spinal cord causing permanent damage. So I have been for the past almost 28 years, a full time wheelchair user and unable to walk, or have any sensation below my chest.

Shonali: (00:00:59) Welcome to Finding Strength, the Spaulding Rehabilitation podcast, where we'll try to connect the dots between rehabilitation research and the people who are most impacted. This production is a collaboration between the Model Systems and the Rehabilitation Outcomes Center at Spaulding.

Shonali: (00:01:22) Today's episode is the second of a two-part series inspired by the article ‘From Survival to Survivorship Framing Traumatic Injury as a Chronic Condition’ by doctors Juan Herrera Escobar and Jeffrey Schneider, published in the New England Journal of Medicine in August 2022. We're joined today by Dr. Herrera Escobar. Juan Herrera Escobar, MD MPH is a physician scientist from Columbia with advanced training in trauma outcomes research methodology. Hererra Escobar serves as research director of long-term outcomes in trauma at the Brigham and Women's Center for Surgery and Public Health. His academic interests are in studying the long-term physical, mental and social health consequences of traumatic injuries, as well as in the implementation of trauma registries and trauma systems design. We're also joined by the voice you heard at the top of the episode David Estrada, JD. He holds many hats across Spaulding, but one hat is as program manager of the Spalding New England Regional Spinal Cord Injury Model System, and the Exercise for Persons with Disabilities Program. He represents United Spinal Association as a peer mentor, board member and former Executive Director of its Greater Boston chapter, as well as a national chapter liaison. Living with a spinal cord injury and wheelchair user for the past 27 years. He has focused on consumer led advocacy, locally and nationally to promote high quality services for better health care management and access to resources for the SCI community. For nearly a decade, Dave was an Athletes with Disabilities coordinator for the Boston Marathon and continues to promote adaptive sports participation. I'm your host Shonali Gaudino. I'm an occupational therapist and I've been working at Spaulding for over 10 years. I'm the administrative director at the Rehabilitation Outcomes Center at Spaulding, and I'm on a mission to build bridges amongst our community of clinicians, researchers, and people with lived rehabilitation experience.

Shonali: (00:03:44) So I actually just want to start with Dave, this entire podcast was your idea. You know that right?

Dave: (00:03:51) I do. And I'm glad that you're a part of it because I've never done it before.

Shonali: (00:04:00) And now I have like a new full-time job, unintentionally. So we're going to be podcasters now and what was the idea that you were trying to achieve?

Dave: (00:04:11) I think the idea was and always has been how do we demystify medical journal articles, especially geared towards the people they're written about, who usually never read them. And just to kind of bridge that gap between the researcher and the population that the researcher is studying and reporting on. The other part of me wants to attract the population into the environment in terms of research and care and treatment within the healthcare system. Because there, as I mentioned, there are a multitude of barriers to the healthcare system after you have a traumatic injury. And my feeling is that the more people with those traumatic injuries, working inside the healthcare system will eliminate those barriers much more quickly.

Shonali: (00:05:08) If you caught our first episode, you learned about the Burn Injury Model System from Jeff Schneider. I asked Dave to define the model system in his own words, since he works for the Spinal Cord Injury Model System.

For people who are listening, our future listeners, what is the model system?

Dave: (00:05:20) So it's a longitudinal study that collects data on people with spinal cord injury, traumatic brain injury and burn injury. I work in the spinal cord injured population. And what we do is we enroll patients before they leave the hospital. We ask them questions, a questionnaire, like where you live, where you're being discharged? Are you going back to live at home? And is your home accessible? Are you going back to work? Or are psychosocial questionnaires as well? Are you you know, depression scale? And then we follow up with them a year later, and ask them list of similar questions, and also more like such as you know, pain? Have you had any an overnight stay in the hospital over the past year? How much caregiving do you need per week? Is it paid caregiver assistance. And so we're trying to collect as much data as we can in terms of how people are living after spinal cord injury. And that, in turn can lead to changes in policy, as well as clinical care.

Juan: (00:06:36) Yeah, I think everything that we want to improve needs to be measured in some way. If we just think about athletics, I don't remember off the top of my head was what was the record of the first marathon that was ever run. But I think it would be probably around close to three hours. We've been able to decrease that by almost an hour in the past few decades. And the only reason why that has been able to happen is because we're measuring constantly, the results and get better at the things that we're not doing right, whether that means improving the training regimen, etc. And I think we should apply the same framework to what we're doing specifically for trauma. You know, that means tracking outcomes for patients that not only short-term outcomes, like mortality or complications or readmissions, but go beyond that and say, well, what happens to the patient is six months out, a year out, five years, even for the entire lifespan.

Shonali: (00:07:48) The perspective piece by doctors Herrera Escobar and Schneider outlined not only the current challenges in long term outcomes of trauma care, but also a recipe for solutions. They write, “providing comprehensive care for people with traumatic injuries requires a robust trauma system. Current trauma systems have inadequate follow up processes to meet the psychosocial and rehabilitation needs of injury survivors, and they often aren't set up to address the critical role of social determinants of health in recovery. An important step toward improving outcomes and recovery experiences among people with traumatic injuries could be to classify such injuries as chronic conditions.” I asked Juan to tell us more about what inspired this article.

Juan: (00:08:42) This is an article that came up as a product of exactly of what Dave was just saying. And it's collaboration and making sure we were sharing information that we were learning from our own internal study here at the Brigham, which is called the Functional Outcomes and Recovery After Trauma Emergencies Project. And then the the team over at Spaulding we wanted to highlight the, two things. One was the tremendous burden that trauma patients suffered in the long term. And just to kind of put a very specific example, firearm injuries, whenever we see a mass shooting or an event that involve firearm injuries, the immediate attention goes to how many people die as a consequence of the event. And that's, of course, important and it's a significant piece of the of the picture, but it's not the only one. And what happens to those people who survived those events. These survivors are now facing a complete different life from every single aspect from their physical health, their mental health, their social interactions. And, and that's exactly the point that we wanted to really highlight in that piece. Is this is a big problem. Traumatic injury is a condition that was causing a significant amount of impairment, it costs a lot of money to the health system, and also to the society overall, I feel the value of trauma systems to society is to be able to bring people who have sustained traumatic injuries to the closest to their baseline as possible. And I think we're failing in doing that. So. So that first point was that and then the second part was, like, I said, try to propose some ideas or solutions or next steps. And, and the way to tackle them is coming together as a community, researchers, clinicians, patients, advocacy group, politicians, everyone in the same tent. I think that starts even with defining what's traumatic injury. And that's probably what's been one of the causes why we have not come together as we should, is. What's the definition?

Dave: (00:11:05) It is difficult, because, you know, when I go to the dentist, I feel like it's a traumatic event. You know, like, I get nervous, I do not like the dentist. Fortunately, I've only had a couple surgeries in my lifetime. But like, Diana, who you interviewed, prior, she's had over 150 surgeries because of her burn injury. She told me and I was just like, holy cow. I don't know how a human being can go through that much... what I consider trauma, like all those surgeries. So there are you know, with that it's different differing degrees on individual experience of trauma, what they think trauma is.

Shonali: (00:11:38) We should look up like the dictionary definition.

Juan: (00:11:42) Yeah, there is, there's actually one that I found that I liked a lot, its from the Substance Abuse and Mental Health Services Agency SAMSA. And they have this definition that: individual trauma results from an event, a series of events, or set of circumstances that is experienced by an individual, as physically or emotionally harmful, or life threatening. And that has lasting adverse effects on the individual's functioning and mental, physical, social, emotional, or spiritual well being

Shonali: (00:12:18) OR… not necessarily, AND… so in, but using that definition, then probably every single person on this earth has some claim to trauma, right?

Dave: (00:12:30) Yes. Right. And then then the next question is, how do you how you categorize it, and then treat it if each person is different and unique in their trauma and traumatic experiences?

Shonali: (00:12:51) Juan, you worked in Colombia... were you born in Colombia?

Juan: (00:12:53) Yes. Yes, I was.

Shonali: (00:12:57) And so how does and you, you treat it in Colombia? So I don't know if you have a thought on how this compares, to systems that are available in Colombia?

Juan: (00:13:07) Yes, that's an interesting question. There's definitely a huge amount of burden in terms of traumatic injuries in the country for several reasons, and motor vehicle crashes, interpersonal violence are rampant in the country. And that has led to, unfortunately, the increasingly growing population with disabilities in the country, I think that there are some areas of the country that they have become really good at treating patients in the hospital. And unfortunately, thanks to the volume, to the high volume, surgeons gets to have a ton of patients, but there is minimal follow up. But there is, I think, an opportunity, you know, when certain places or certain hospitals start changing that, unfortunately, this is not happening at the system level. It is more at the hospital level. So I had the experience to work in a hospital in Cali, is called Fundación Valle del Lili, and they are doing a great job actually, in both treating trauma patients. And then also making sure that the patient has a smooth transition after discharge and kind of thinking through the patient as a whole. And actually, that's that's an important point about this whole perspective that we published and we want to change is the continuity of care and how do we make trauma not an acute event where the patient is treated at the hospital and then everything over, but rather, that's just the first step. And that common feedback we got from the patient's part of the of the research studies is that care at the hospital was great was terrific was fantastic. But then I felt alone when I left the hospital I didn't know or what to do, what were the next steps. And that's the part where I think work hard to make sure the patient feel is continuous care.

Dave: (00:15:18) I spent three months in the hospital and immediately discovered how difficult it is to navigate the complex healthcare system that we have here in the United States. As a person living with a disability. The majority of health insurance plans dictate that someone with a spinal cord injury must go through their primary care physician for all their medical needs. And the fact is that most primary care physicians don't know a lot about spinal cord injury or other neurological disorders. And it's based on the simple fact that they're not taught in medical school about treating people with spinal cord injury or other neurological conditions. Doctors called physiatrists specialize in treating spinal cord injury. But you need a referral from your primary care physician to see one, which creates an immediate barrier to accessing proper care and treatment for anyone living with a spinal cord injury.

Shonali: (00:16:39) Dave's story highlighted a lot of the same themes we heard from Diana in our first episode and Juan’s experiences in Colombia: we need better transitions of care. People who experience traumatic injuries often feel that discharging home from the hospital is like being set adrift at sea without a map. While we still struggle to effectively support people during transitions of care, Dave talks about how we have made some large strides, especially in our cultural attitudes towards mental illness. So much so that we are now in dire need of more trauma-informed mental health providers.

Dave: (00:17:14) Things are so much different now than they were when I was first injured. trauma care was there in terms of a psych psychologist would come into my room and try to talk to me. And I didn't want to talk to the psychologists. So it was there. And even back then I think compared to now, like, I wasn't put on any antidepressants or anything like that, because I didn't really know about the injury back then or what was going to happen. And your whole mentality after a spinal cord injury is like, I need to walk again, and I need to walk out of this hospital. It wasn't like on the minute details of you know, this is, you know, this is how you use a wheelchair, this is how you're going to navigate the world from now on. And this is your, your self-care, And you're not, you know, you're not thinking about that. You know, you're just thinking about recovery. So there's a, there's a lot of a lot of different things. And and again, I am optimistic because I've got my own longitudinal, personal longitudinal, you know, aspect of, of how things have changed over, over, you know, almost three decades.

Shonali: (00:18:44) And you said that, at the beginning, you had a psychologist come and talk to you, did you ever get sort of follow up care from anyone?

Dave: (00:18:45) No, I kind of refused to talk to the psychologist because I was just sort of I, you know, for me, I knew what had happened and I kind of not that I accepted it right away, but I was like, Okay, I'm gonna do the best I can to recover, make whatever recover, I can. And I was pretty miserable in the hospital. And probably needed that mental health service, but I didn't. And again, just being a male who was born in 1972, I was like, you know, you don't that that was never part of. And then Juan mentioned, the Hispanic culture; depends on which culture you're where you're brought up - sometimes they're more averse to mental health services. So it's, it's difficult. There's not enough mental health providers to provide the specific things that we need.

Shonali: (00:19:34) Yeah, there's not enough mental health providers period, let alone the specific challenges that some of these populations really need. Right. I mean, I'm a longtime advocate of getting a therapist. I've been seeing a therapist for five, five years, six years now. Are there do you have mental health needs or exercises that you engage in today still?

Dave: (00:20:03) No, I actually don't and I like it's funny because I, I work a lot. And for me, my mental health strain was working too much. And I didn't realize until COVID hit; exercise is my mental health. Yeah, channel.

Juan: (00:20:18) Yes. And the added barriers that happens because of these conditions. Like I remember one when I was speaking with a Spanish speaking patient, and he has to go through a traumatic event, and then this was six months out. And the patient screened positive for depression, anxiety and PTSD. Every single mental health condition that we screen for, he screened positive for. When talking to the patient, he said, “Yes, I know, I need help, I need the support.” So he was aware of that, and he has tried to get that support. But then the problem was actually not getting the mental health provider. But it was getting a mental health provider that speaks Spanish. And the solution of the system was, you know, well, we can put an interpreter in the room. And he was like, but you know, I don't feel comfortable talking about all of these different things with… it's already uncomfortable to talk with someone else in the room. Now you're asking me to do this through a second person? That doesn't work.

Dave: (00:21:23) What Juan just said… we have the same problem. When you're impatient, you can get mental health care. But when you leave the hospital, it's more difficult. And also, when you do find a provider, they typically know nothing about spinal cord injury. So a lot of feedback that we get from when we were doing support groups or peer mentoring is like, yeah, I found somebody but I don't feel comfortable because they don't know what I'm really… about spinal cord injury or what I’m going through, which I find is fascinating, because it's a trained mental health professional that that the person they're trying to help can't relate to, you know. So it is a problem.

Dave: (00:22:13) A few years after my injury, I became a certified peer mentor, through a national organization that advocates on behalf of people living with spinal cord injury. And every year, this organization goes to Washington DC, to visit legislators and discuss essential legislation that affects the spinal cord injury population. We tell our stories to federal legislators and advocate for legislation that directly affects people living with spinal cord injury. In 2022, we focused on the Air Carrier Access Act amendment, which would provide accessible bathrooms and more space inside commercial airplanes for wheelchair users.

Shonali: (00:24:50) Dave and Juan both see the importance of finding our commonalities, learning to speak the same language and joining forces to achieve our shared goals in addressing universal social health needs, Juan explains that those personal factors can have more to do with outcomes than the severity of the initial injury. And these things add up. According to the article, quote, fatal and non fatal injuries reportedly cost the United States $4.2 trillion in 2019, including $327 billion in medical care, $69 billion in lost work, and $3.8 trillion in value of statistical life, and quality of life losses.

Juan: (00:25:43) There's a fun anecdote about when we were writing the piece, and we were putting together some of the initial numbers that, you know, that are in kind of in the intro of the perspective. And, and we both thought that was a typo that it was unbelievable how we were spending that amount of money. And we like triple check that when we submitted to the journal, then they asked us, like, can you send the reference for this thing? So is it striking so I think we we have an argument from both the patient aspect of quality of life, what we're doing to improve the patient's recovery, and also for the economic stability of the system.

Dave: (00:26:26) I'm also involved in what's called the disability task force through Mass General Brigham. That's one of the things that we're we're trying to identify where we can do a better job in electronic medical records, identifying disability. So we're trying to do provide better services to those with disabilities, based upon their medical records.

Juan: (00:26:47) And I think that's one of the key gaps in terms of the data that we have. I think we've gotten better in collecting outcomes that are more aligned with the patient needs. And so things like quality of life, the mental health screenings, pain, return to work, etc, we're, I think, pretty good now in terms of that type of data, but then on the other side, we need to get better at understanding or collecting data on the things that predict those outcomes, and social determinants of health are probably at the top. Because if we have the data, then I think we will have a better picture to treat patients and then understand all the complex relationships that happen between those, those two things. A common thing is what's the role of the clinician, and what's the role of the hospital, in addressing these type of things. And ultimately, if we want to improve the patient's health, we need to do that as well. You know, we asked physicians, whether you know, they want to prescribe this type of services to patients, they all most of them agreed. 85% of physicians, like four out of five would say that they would prescribe all these things, if possible…

Shonali: (00:28:12) they would prescribe things like transportation and better food and…

Juan: (00:28:16) Exactly, top things would be a fitness program, nutritional food, transportation assistance, employment assistance, adult education, housing assistance, in contrast, 80% of them are not confident in their capacity to address these needs. So is it's important that we start shifting the treatment from the specific symptoms, right, like the pain, etc. And do that together with addressing the social needs.

Shonali: (00:28:47) Yeah, it makes me wonder, though, whether or not physicians or what type of physician is the right vehicle for us to deliver those solutions, right. It needs to also be other disciplines, right? We've got social work, occupational therapists, to be honest with you, I think are underutilized in that in that space.

Dave: (00:29:09) As we become more inclusive. Things will change. It's just, it's going to take time.

Juan: (00:29:15) Yeah, and actually, so one of our projects is funded by the United Against Racism initiative so the name of the project is the Non-English Speaking Trauma Survivors Pathway, the NESTS Pathway. And the whole purpose of that pathway was we need to do something to help non-English speaking patients navigate better the healthcare system. So we started with Spanish speaking patients. And there was three interventions that we started. The first one was to implement universal screening for social determinants of health, for assessing the risk for developing poor outcomes in the long term. And the second piece, which I think it's probably the most critical one is having a community health worker, that kind of bridges, that transition from the hospital, to the community, and someone that they feel is part of their team part of their culture. So so we were lucky to have Anna, with our community health worker helping on Spanish speaking patients and, and navigate through all that process. And, and the third part is giving the patients some tools so that they can better navigate the system. So one of them is, it's actually it's called the genie app, which is, is like that Uber for translation services. So it's accessing a translator in real time, just 20 seconds, hit a button, and then they're connected with someone who's sitting somewhere else in the world, and translate, you know, for the patient. So and the whole concept of this pathway is specifically what Anna is doing for the patients we think of as framing the traumatic injury as an opportunity to change or impact the patient's life, in their environment, in their social conditions in everything. In our own self, the trauma event, like no one wants to have one. But if it already happened, let's use it as an opportunity to fix many things that have not been fixed, and its connecting patient with multiple services. And actually, some of the services is interesting, because it's not that they don't exist, they are already there. But patients don't know they are available. And just having someone that connects them with those resources is it's making that I think, a significant impact.

Shonali: (00:32:09) That's one of the biggest problems in this country. you talk about how there's a lack of continuity in Colombia, we have a lot of good programming in this country, but people don't know it exists. There's, it's almost like there's too much and we don't know how to point people to it. But I’ll be interested to hear what people's reactions are to that idea that trauma is like the gateway to being able to help you in all aspects in all of these different areas of your life. Because you know, I can I can imagine somebody saying, Well, I'm not going to pay for fixing this person's entire life. But what we know is that it's already happening in the other direction, the same trauma for me, someone with resources, is going to affect me much less than the same exact trauma to somebody who doesn't have the same resources or education or background as I do, right, the same exact injury. So if you're giving both of us the same exact intervention, gonna have different outcomes. So we have to give a different intervention to somebody who doesn't have the same resources or has different barriers and meet the barriers that exist.

Dave: (00:33:24) And like other chronic conditions, such as diabetes or heart disease, there are high risks of secondary complications that all individuals living with spinal cord injury experience, which come in the form of infections, bone fractures, low blood pressure, chronic pain, and skin ulcers. Trying to maintain your very best health after a spinal cord injury is somewhat paramount for survival. Many people with the secondary complications like myself, work, go to school and support a family. The majority of individuals living with spinal cord injury need custom wheelchairs to get around in accessible and inaccessible environments. And many individuals rely on caregivers to maintain their independence. One other major factor that catches up with you more quickly than the general population is aging with a spinal cord injury. I just turned 51 this year, and again, it's been almost 28 years since my injury body has been slowly breaking down, but at an accelerated rate compared to my peers without spinal cord injury. While they are more exercise and recreational opportunities for the spinal cord injury population than they've ever had before, there is no prescribed protocol for aging with a spinal cord injury. And many people still don't have access or time to pursue independent exercise for recreation.

Shonali: (00:35:05) I worked for several years in Spaulding’s skilled nursing facility, and saw firsthand how unprepared most of us are to deal with the complications of aging. Dave story shows us how that mental block, which is maybe just part of human nature, is even thornier for people with spinal cord injury.


Dave: (00:35:30) Yeah, so it's kind of finally being recognized. Jeez, I had a good friend pass away, good friend with spinal cord injury passed away last. The year before, I just went to a week of another good friend of mine with a spinal cord injury, a lot of it is just, it's system breakdown, right. So, you know, we all know like your skin is more vulnerable, everything becomes more vulnerable as you age. And it's just compounded with spinal cord injury with sitting in the chair all day, again, not being able to stand or, or maybe not being able to exercise. I know, it's, there are papers in medical journals, from the model systems, about aging with spinal cord injury. So if somebody has an injury at the age of 20, that they don't have a spinal cord injury, their life expectancy is up to like 60. If they do have a spinal cord injury, and it's a high level injury, it's it's about 10 years from the injury. And then it just increases with the, with the lower level of injury, you know, I've been completely independent, because I'm a T3 paraplegic, and I have function, full use of my upper body. So I'm pretty much completely independent, I know there will come a point where, and I can like transfer out of my chair onto the floor and get back up to my chair, just using certain techniques without being able to use my legs. But I am starting to like think about when that's not going to be possible anymore. And when I may have to use a power wheelchair. So it's things like that. And like that comes that also brings along like, gee, am I going to… what… am I going to be depressed when that happens? You know, like the mental health aspect of it, not only the physical aspect, but the mental health aspect

Shonali: (00:37:25) In theory, that's what the model systems is going to help us sort of define that trajectory of what's going on in people's lives as they age, right?

Dave: (00:37:32) Yeah, and then add everything on to that, like, as you age, you know, heart disease, diabetes, so just kind of compounds compound over over time.

For the past six or seven years, I've been involved with the spinal cord injury model systems research. And one of the many studies that have been done is a study that people with spinal cord injuries should stand. We spend most of the time in our wheelchairs, and staying healthy, which includes standing is essential for our population. It's beneficial for bone health and maintaining blood pressure, amongst other things. After spinal cord injury, a person using a wheelchair sits all day until they go to bed. And technology has brought about wheelchairs that can enable individuals to stand. However, they cost more than a standard wheelchair and insurers won't pay for them, because they're not considered a medical necessity. So most individuals with spinal cord injury are denied reimbursement for a standing wheelchair and relegated to sitting most of their lives, which is detrimental to anyone's body, if done for extended periods of time.

Shonali: (00:39:10) This example from Dave is one of so many stories about how rehabilitation research can propel us forward, particularly when the central aims are fully aligned with the needs of the community that's being served.

Juan: (00:39:28) We tend to focus a lot on the arguments and why is that important from clinicians’ perspective or the hospital perspective? Why that data is important to them, but not as much of why is that important to the patient? And I think one of the key points there is: just to improve the patient provider conversation in terms of having clear expectations of what's the recovery going to look like. The first question that the patient have when they're in our office is when I'm going to be able to do this activity I used to do in the past or how is going to look like in the next six months, year, and so on. So we should be able to answer those questions. And the answer to those questions should be informed by robust data and not just the experience of that particular clinician, we need the data to do that.

Shonali: (00:40:19) Do you have some specific examples of how you've seen us be able to collect big data and use that to change a specific policy or your approach? Yeah,

Dave: (00:40:31) I mean, you know, one example through the model system is a study called EQUATE. And it's it's Equity and Quality in Assistive Technology for Individuals with Spinal Cord Injury. EQUATE has been going on for I think, oh, almost 15 years. It's a questionnaire and an interview about assistive technology. More specifically, it's wheelchair based. So people who are using wheelchairs that make the model any, like, failures, repairs that they they've done or had to have done. And as I mentioned, we went to Capitol Hill in 2022, to talk about the standing portion of the wheelchair. So this concrete data information has been used to implement policy change and approach legislators so that we can have better equipment. But there's always it's always a constant battle, because it's, it's about money, and we need our wheelchairs to live independently. And technology has come a long way. Wheelchairs are extremely lightweight. Now they're extremely reliable. But now we're at this point where wheelchairs enable you to stand. And insurance companies don't want to reimburse for it, or CMS doesn't want to reimburse for it. So we're always continuously advocating for better reimbursements for equipment that that we need and will improve our quality of life.

Juan: (00:42:08) Dave, I'm actually curious, what are your thoughts on, or how can we increase our presence in Congress, and how we can become better at advocating for traumatic injuries?

Dave: (00:42:21) you can do this through the government websites or any like advocacy, nonprofit advocacy organization. And you can easily type in where you live, it will tell you who your legislators are, and you can write your legislator. So. and all the emails that legislators receive are read. Anybody can do it. So and I always thought of like, Why aren't doctors more involved in in advocacy and policy? And at Spaulding, along with the Disability Task Force, I think we wrote two or three letters. One was to the Massachusetts State Legislature is on housing. To increase more accessible housing for wheelchair users, as well as access to work spaces, not workplaces. Workplaces have to be accessible, Federal workplaces have to be accessible, but workspaces don't for instance, the room like a little kitchen, in your work, doesn't have to be accessible.

Shonali: (00:43:33) We recorded this episode on January 11. And on February 17, I received an email from the Department of Health and Human Services announcing that the Centers for Medicare and Medicaid Services released a proposal that would for the first time expand coverage for power seat elevation equipment, on certain power wheelchairs. When we think about research and policy, we can be crushed by how slowly things seem to move. So we need these sorts of reminders that research, pursuit of knowledge, puts us on the path to positive change.

Shonali: (00:44:06) If you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our model systems, the Spaulding Harvard Traumatic Brain Injury Model System, the Boston Harvard Burn Injury Model System and the Spinal Cord Injury Model System all funded by the National Institute on Disability, Independent Living and Rehabilitation Research. The material presented here is for general information purposes only.

Juan: (00:44:59) …originally from Columbia, I'm actually from the world capital of salsa: Cali.

Dave: Cali

Shonali: Salsa? You dance?

Juan: Salsa. Yeah, I do. It's actually, there's actually a couple good places here to go dancing salsa. There’s one is called Havana, and Lavardica both in Cambridge, they're nice. Yeah, but but pretty much every every Latin rhythm I like: merengue, reggaeton, bachata…