Want to improve telehealth? Ask people with disabilities. [PODCAST]

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“The tech industry needs to invest in developing platforms and devices with active, consistent, and frequent input from the disability community. This input must reflect a range of individuals with disabilities. A variety of identities exist beyond disability status. Overlooking this diversity will continue to exacerbate telehealth disparities based on overlapping factors such as age, primary language, internet access, and more.

Policymakers must welcome people with disabilities to voice their needs for care. Teal on the Hill, focusing on individuals with Spina Bifida, is one example of people with disabilities and their advocates annually voicing their needs to legislators. The American Association of People with Disabilities has sent public letters to Senate Majority and Minority leaders regarding what will benefit the disability community during the pandemic and beyond.”

Christina Khou is a rehabilitation psychologist. Colleen Stiles-Shields is a pediatric psychologist.

They share their stories and discuss the KevinMD article, “Want to improve telehealth? Ask people with disabilities.”

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Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at kevinmd.com/rate. Subscribe at kevinmd.com/podcast. Today on the show we have Christina Khou and Colleen Stiles-Shields. Christina is a rehabilitation psychologist, Colleen is a pediatric psychologist, and together they wrote the KevinMD article “Want to improve telehealth? Ask people with disabilities.” Christina and Colleen, welcome to the show.

Christina Khou: Thank you very much.

Colleen Stiles-Shields: Yeah, thank you.

Kevin Pho: So we’ll get into your article in a little bit, but first off, I always want both of you to briefly share your story and journey to where you are today. Christina, why don’t you go first?

Christina Khou: Sure. Thank you for the introduction. I’m a rehabilitation psychologist here at Rush. I got here through completing my PhD in clinical psychology. I’ve always been really interested in how psychosocial factors impact folks’ health and health behaviors. That led me to graduate school, and while there, I completed a clinical rotation in rehab psychology, which is a field that focuses on treating and helping folks, advocating for folks that are experiencing disability due to injury or illness. And so that really led me to focus my career here, and I’m really happy that I get to do lots of clinical work with folks in the hospital that have a lot of high needs.

Kevin Pho: So Christina, tell me about some of those psychosocial influences when it comes to rehabilitation potential. Talk a little bit about that intersection.

Christina Khou: Yeah, absolutely. So what we really know is that how folks feel emotionally can absolutely impact how they feel physically, and we see that factors such as anxiety and depression have a huge role in impacting recovery and adjustment to disability. And so in rehabilitation psychology, our role is to advocate for patients, especially when they’re in the hospital and coping with these new injuries or chronic illnesses, and helping them in their recovery journey, really, and also helping the team recognize psychosocial factors, again, mental health and other issues that they’re encountering that could impact the recovery.

Kevin Pho: All right, and Colleen, just briefly share your story and journey to where you are today.

Colleen Stiles-Shields: I was really getting frustrated with seeing that there was really great care out there, and there’s just so much in the way of folks getting to that care, practically, emotionally, and systemically. So I went to study psychology where I could learn more about telehealth and about how digital tools might be a way to increase access for folks. And as a pediatric psychologist, a lot of my training and work reflects a lot of what Christina has done. It’s just more geared towards little guys and their families, and figuring out how we can make the mood and mental health piece work better when there are physical things going on.

And I will give a little spoiler alert to our article, too: Digital health is great, telehealth is great, and also, it has not been designed in a way that makes it the great equalizer that it’s been marketed as. We could really do a better job.

Kevin Pho: So Colleen, through your lens as a pediatric psychologist, what are some of the major issues that you’re seeing daily?

Colleen Stiles-Shields: Oh, there’s a lot going on, because not only were all these things cooking when Christina and I trained, but also COVID has really exacerbated a lot of the problems. So as a pediatric psychologist, there are families that are concerned about how to keep their kids physically and mentally healthy, especially in contexts where they maybe can’t go out and play with their friends like they used to, or would be able to prior to a chronic illness or prior to COVID. So a lot of families are really worried about how to keep their kid on a great trajectory, and there’s a lot that’s in the way.

And what’s happening to every family, not just those with chronic illnesses or disabilities, is there’s also a lot of hardships going on in our general society that are making some of the barriers that much harder, whether that’s transportation, costs, or child care. Everything’s just been amplified. So I think there’s a lot that we as clinicians can probably talk about that might be helpful for a lot of folks.

Kevin Pho: All right, let’s go straight into your KevinMD article, titled “Want to improve telehealth? Ask people with disabilities.” Christina, I’m going to ask you to summarize that article for those who didn’t get a chance to read it, and maybe share a story of why you and Colleen decided to write it.

Christina Khou: Yeah, absolutely. So Colleen and I had the opportunity to take part in The OpEd Project here at Rush, and that is an organization for clinicians, medical providers, and professionals, really, to get their voices out there, to advocate on issues that are really important to them. So Colleen and I actually met through one of the workshops. She and I were both waxing poetic and getting really angry about the lack of telehealth services and how there’s really been a lack of engaging the disability population, disability advocates, in making telehealth better. So that really propelled us to write this article.

And in our article, we talk a lot about how telehealth, as Colleen said earlier, is supposed to be this great equalizer in terms of getting appropriate health and mental health care, however folks with disabilities have been left out of that conversation, and how we as a nation, and clinicians and researchers too, need to really push to include folks that are experiencing various disabilities in this conversation to make it better for them, so that we can improve access for all people, really.

Kevin Pho: Christina, what are some of the issues through the lens of someone who is disabled? What are some of the issues that we’re missing from the conversation?

Christina Khou: Yeah, absolutely. So in my clinical work, I work with a lot of people that have disabilities, and what I’ve seen is that a lot of the platforms that we use are truly not accessible. So folks that have various cognitive, visual, or hearing impairments have a really hard time interacting with these interfaces. We really need to improve the platforms that we use and include other platforms too, like texting modalities, phone, things of that nature. We’re also seeing that there’s not a lot of access to even broadband internet in folks with disabilities, and on top of that, folks that live in really rural areas don’t have access to these platforms that require strong internet service.

Kevin Pho: And Colleen, from your perspective, tell us about some of the issues and missing voices that are absent from the conversation when it comes to telehealth.

Colleen Stiles-Shields: A lot of broader digital tools have been designed with the input of the worried well and a lot of folks who look a lot like me, like nice, white, college-educated ladies. And not that they’re not great, but that’s not going to include a design that is really opening the door and welcoming all to the table. So folks with lived experiences with disabilities are very aware of what they need and what is useful to them, and are very willing to give that input when asked.

And I think the asking is really important, not only to be welcoming, but also for the idea that we as clinicians and researchers truly want to know and make things better, because folks with disabilities also have to do a lot of asking to begin with to make things more inclusive for them. They have to ask where the accessible ramp is. They have to ask if the elevator is working. They have to ask for subtitles. Those are things that are not always just a given, when really they should be at this point. The ADA has been around for more than 30 years.

Additionally, I think we need to really consider that people are not just one demographic. Someone with a disability might also have a minoritized status in terms of race and ethnicity and be experiencing racism. They might be living in an area that is rural. They might also be living in Chicago. For example, there is really poor broadband access in very specific communities in our great city. So even if someone is a mile from our hospital at Rush, or at UIC, where Christina and I are, they could be facing so many hurdles that someone off in southern Illinois might also be facing, too. And we’re not really asking for that. We’re not assessing for that. We’re assuming everyone has equal access.

So when we’re talking about asking people with disabilities, it’s not only asking about their lived experience with disability, but it’s asking about all of their lived experiences, because that’s really going to inform how they’re able to access care.

Kevin Pho: So Colleen, is there a story, case study, or example that you could tell us that can really illustrate the issues that those who are disabled have when it comes to accessing these virtual telehealth options? Any stories that you’ve seen through your practice?

Colleen Stiles-Shields: Yeah, I’ll give an example, and I would love to hear from Christina, actually, because she’s seeing many more patients than I am. So I’ll maybe focus on a kiddo case that I had across the pandemic, where they had a lot of concerns about exposure to COVID-19, and they didn’t have the ability to have video visits. They did not have the broadband access. They didn’t have reliable access to the technology, even though they might have answered on a survey, “Yes, I have access to technology.” They did, technically, but it was not consistent. It was not private.

And what happened, unfortunately, over time, working with this family, is I switched to completely non-visual telehealth, just calling them on the cell phone, because that’s how we were able to reach them. And over time, their cell phone bill lapsed, their service was briefly cut off, and they had no access to care at that time. So that’s just one brief example that, again, was compounded by the pandemic, because they literally just could not feel like they were safe leaving their house. But I’m going to defer to Christina to give other examples as well, because she has many.

Christina Khou: Yeah, absolutely. So again, during the pandemic, we had a lot of patients that preferred to have telehealth visits because of their concern for exposure to COVID-19. And I work with a lot of patients that don’t have access to a car, and so they would have to rely on public transportation, which was not an option for them because of fear of exposure. I had one particular patient who was experiencing basically progressive visual and hearing loss in their medical course, and they also didn’t have the ability to get a ride to my office. And so telehealth was the only type of appointment they could get with me.

So with that, too, we had some barriers, because she was not able to navigate the video interface that we used. She could not, well, first of all, she did not have a smart device, so no tablet or phone. She was really limited to telephone visits. But even with that, she wasn’t able to dial the telephone or even answer my phone calls because of the visual impairment that she’s experiencing. So she had to rely on a friend that would be present for our treatment sessions to answer the phone and dial it for her. And this was really problematic, because these were sessions that weren’t totally confidential, because her friend was present. Even though she felt somewhat comfortable having this friend there, it added another barrier to us having a fully open session.

Kevin Pho: We’re talking to Christina Khou. She’s a rehabilitation psychologist. And Colleen Stiles-Shields, she is a pediatric psychologist. Together, they co-wrote the KevinMD article “Want to improve telehealth? Ask people with disabilities.” So Christina, I’m going to ask each of you about steps going forward. What are the options that we could do to fix this issue?

Christina Khou: I think, to Colleen’s point, we need to ask folks that are in these various populations, both with minoritized identities and disability identity too. She and I absolutely work with these populations, and I think that we could agree that it’s so important to ask these populations directly: What do you need? What can we do to make things better? And to go from there.

Kevin Pho: And Colleen, if we were to ask them what they would need, give us some specific examples of what we could do better.

Colleen Stiles-Shields: Yeah, so I think just not only asking, “Do you have access to technology?” but really finding out what that means: if it’s consistent, if it’s private, if it’s shared, if it works at home, or if you have to run to McDonald’s to make it work because they have Wi-Fi there. So really asking a lot more than a basic yes-no question when it comes to technology. Also, not assuming that everyone knows what you’re asking when you ask about access to technology, and what that might look like, and what the parameters of a session might include.

And then additionally, just how folks use technology to begin with, because technology is not a panacea. I’m invested in technology, but it’s not going to hit everyone the same way. And finding out what preference people have for using technology for certain types of visits or certain types of issues, to also better understand, as we move forward, as the pandemic progresses, to more of a hybrid model that works better for folks.

Kevin Pho: And I’m going to ask each of you your take-home messages to the KevinMD audience. Christina, why don’t you go first?

Christina Khou: The take-home message is that telehealth works. We know it’s better for folks that have disabilities and other minoritized identities.

Kevin Pho: And Colleen, your take-home messages.

Colleen Stiles-Shields: And not only does it need to be better, but it needs to stay. So for the folks who think the pandemic is over and everything needs to shift in person, that is not going to work for everyone, and it’s not going to include everyone. So we need to make sure that we figure out how this looks going forward and that we give people the options that they need when they need it.

Kevin Pho: Christina and Colleen, thank you so much for sharing your time and insight. Thank you both for being on the show.

Colleen Stiles-Shields: Thanks for having us.

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