What is happening in Canada beyond just AT products, such as accessibility standards? Do you want to age in place? What are some challenges faced by our aging population and their caregivers? How do we get the technology into the hands of those that need it? Find out this and more as we continue our chat with Drs. Alex Mihailidis and Tilak Dutta.
Host: Dr. Mary Goldberg, Co-Director of the IMPACT Center at the University of Pittsburgh
Guests: Dr. Alex Mihailidis, Barbara G Stymies Chair in Rehabilitation Technology, and lead of the Artificial Intelligence and Robotics team at KITE, and Dr. Tilak Dutta, Scientist at the Toronto Rehab Institute.
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Full Episode Transcript | PDF
Timestamps:
01:30 Knowledge Translation Beyond Products
06:37 Barriers and Facilitators of Implementing Standards
10:19 Challenges of an Aging Population
15:49 Technology Polarities faced by the Aging
18:40 Advice for those going into AT
SPEAKERS
Alex Mihailidis, Tilak Dutta, Mary Goldberg
Mary Goldberg 00:04
The IMPACT Center at the University of Pittsburgh supported by the National Institute of Disability, Independent Living and Rehabilitation Research, proudly present ImpacTech. Today's episode is Support for the Sandwich Generation with our guests, Dr. Alex Mihailidis, Barbara G. Stymiest Chair in Rehabilitation Technology, and lead of the Artificial Intelligence and Robotics team at KITE and his colleague, Dr. Tilak Dutta, a Scientist at KITE and part of the home and community team. Recorded remotely from my soundproof bedroom closet in Pittsburgh, PA. This is your host, Dr. Mary Goldberg, and welcome to our 12th episode of the ImpacTech podcast series. We've really enjoyed chatting in the last episode with both Alex and Tilak about kite the process of funding and some success stories. I thought we would start by switching gears a little bit to talk more about and specifically, I think this is you Tilak. In your work in Knowledge Translation beyond products, including activities related to accessibility standards, Canada, could you kick us off by talking a little bit more about this specific effort? And perhaps some of your other work in standards?
Tilak Dutta 01:30
Yeah, I'd be happy to talk about that. The, you know, when, when our homes get built, there are some very simple rules that define a lot of the measurements. And you know how, how big the stairs are going to be in the design of a handrail, for instance, and making small changes to some of these requirements. So how, for instance, how long have a stair should be so the how, how long it is how big a person's foot can land on it without slipping off the end. For instance, the difference between a six inch stair and an eight inch stair can mean the difference between someone I think it's it's a 30% difference in how often people fall are known to fall on stairs like that. So one of our scientists on our team Allison Novak works with the building code she she studies stairs and handrails in her research and the findings that she comes up with, she brings them to a technical committee at the Canadian building code and and makes changes to those building codes. And the most recent changes have resulted in stairs being coming safer. I know that her upcoming work now is focused on making handrail safer some of the work that her graduate students have been doing. It has defined what the shape and size of handrails should be, to keep people safer if they do fall to be able to make sure they they can grab those handrails. And so those will be applied to the standards Building Code soon. In Canada, we've actually recently had the passing of the accessible Canada Act in 2019. And so federally controlled spaces in the country will soon have a new, a whole new range of standards that will define define how they should be laid out how they should be designed to be more accessible for people. And accessibility really covers a broad range of things, you know, including how people get in and out of spaces. You know, when we think about accessibility, I think a lot of us think about someone in a wheelchair or someone with a cane or someone with a walker. But there's, you know, individuals with all sorts of impairments and disabilities, it could be a sensory impairment, someone who can't see very well, someone who can't hear very well. How do we make spaces that people can independently make use of in better ways. And, and there's a lot of research on this, that that's been done over the years. But it's not very well applied yet. And so Canada has taken a really leader an important leadership role in this in this area. And rather than require people with these impairments to go to court and to say that, Hey, I can't access this space, we need to change it. They're taking a far more proactive approach to this whole thing. And they've created this accessibility standards Canada, this body whose job it is to, to define a new set of standards for a whole range of different focuses one of them, one of the first I think that's coming out, I sit on the technical committee for this group. It's for new accessibility standards for outdoor spaces. So things like our national parks, how do we make national parks more accessible to to people with all sorts of disabilities and it's a challenging task, if you think about what a hiking trail might look like, and how to make that hiking Israel accessible to all sorts of people, people with all different types of needs. It's a big, it's a big challenge. But but that's the kind of it's a messy problem, but it's an important problem that they're taking on. And they're also funding a whole bunch of research projects to look at these issues. So outdoor standards is one outdoor spaces, making them more accessible. Another one, we actually just finished a project on this, looking at how we make spaces easier to get out of, we call it egress, when there's an emergency. So buildings have been getting more and more accessible, it's easier to get into different buildings, you know, many high rises have elevators, but in the event of a fire, if you can no longer use the elevator, all of a sudden, it becomes very difficult to get someone with a mobility impairment out of that building. And so thinking about how we design spaces for emergencies, and how we plan to get people to keep people safe in those cases is another thing that this group is looking at.
Mary Goldberg 06:00
That work is so inspiring, the proactivity is very sensible, and seems like the right way to go about it with a real human rights based approach rather than the reactive way that is kind of the norm. So I'm assuming that there are its own set of knowledge translation challenges that come with the implementation of the standards, but also how the public and other stakeholders come to know about them. Could you describe perhaps some barriers first, and then some facilitators on how to address those barriers?
Tilak Dutta 06:37
Yeah, sure. I mean, the biggest challenge is that making rules you can make any rule you want, but you actually have to get people to follow the rules and whether so you can create a standard, but that's not a lot. So a standard only some parts of standards get translated to regulations, which then become requirements for people to undertake, right. So it's a delicate balance in. So a standard is really a recommendation to start off with until it becomes a regulation. And so how do you write this so that you create a list of things that people want to adhere to, as opposed to things that are seen as too onerous to adhere to. And it requires, I think the biggest challenge is getting people to understand how, how important it is for people how big the barriers are, that people with disabilities face on a day to day basis, and how our society broadly is improved, if everyone has access has better access to everything. And, you know, we often in this kind of work, people quote, numbers, like 20% of our population has a disability or something like that. But really, the impact is much, much greater. You know, each one of those people is connected to a family or to friends and groups of people who are limited in what they can do. If there's a lack of accessibility. There's, we always use the example of parents when they have little kids, you know, they use strollers, and while you wouldn't call the, you know, the child disabled, or you wouldn't say that they have a disability, they're nice needs are often the same. You it's hard to, if you have for instance, I think about someone like my mom who's watching, when when she used to watch our kids, when they were little, when they were, you know, one or two. And before they could really walk down stairs safely. She lives on the 18th floor of a building. And if there were to be a fire in that building, she could probably get you know, she has a bit of arthritis in her knees, but she could probably get down the stairs by herself. But I'd be very concerned about her carrying my son down the stairs in that in that scenario. And so what so what is a better solution to make sure that she and my son would be safe if she was babysitting. And there are better solutions and that people have developed that there's a growing acceptance that really elevators should be designed to allow individuals with disabilities to use them for emergency egress. And there are standards around how you design elevators so they can be used in that way.
Mary Goldberg 09:19
It's very interesting. And the way you describe this whole concept is like the classic carrot versus stick. Right? So what are the incentives to make everyone want to comply, but not only that design, you know, the next generation of everything so that they're more inclusive and more universally designed. Makes a lot of sense. Awesome. Thank you for that. So you've touched a bit on this concept of aging in place the technology that will support us to do that the standards that will support us to do that. And I'm sure perhaps the notion behind the home lab and motivation, of course for that standards work also till So, could you please describe and perhaps, you know, Alex, I know you are pinnacle for this whole area with the age well, and everything else, could you please describe some of the challenges that the population faces and I suppose the aging population specifically and their caregivers?
Alex Mihailidis 10:19
Yeah, I can maybe start off here until it can, can jump in. You know, obviously, we have, you know, a growing number of older people. And the problem not just in Canada, but this is a stat for North America and most other countries, as well, as we're actually seeing fewer caregivers who can take care of them, I'm talking about family caregivers. And, you know, this is because of the change of the family unit and the family dynamics. But, you know, also a variety of other demographic reasons, which we won't get into here. The other thing we're all seeing is caregivers are becoming younger, as well. And so this whole notion of the sandwich generation of people caring for their children and for their elderly parents is growing at a fairly rapid pace as well. And so, you know, the challenge, obviously, is, you know, how do we provide tools that can help alleviate some of the burden in the stress that they're feeling. And, you know, family caregivers, about 70% of them report some type of mental health issue because of their caregiving duties. And so the challenges we see there is one getting the solutions and the tools and the changing standards, etc, out there as fast as we can. The second challenge, obviously, is finding the way to distribute these new technologies and tools to this population, especially in Canada, you know, we, you know, we have a significant issue here in terms of building up to the critical mass required to, you know, not just develop the technologies, but to sell them and get them on the marketplace. But the final piece, I'll say, before I hand over to Tillich for his thoughts is, the biggest challenge is the education piece is educating family caregivers and older adults about the role that technology can play to support them. And many of them don't really realize that. And that's not because they're technophobic, etc. And they know that myth about older adults as being busted many, many times now, in various resources. It's just, you know, they just don't know about it, because we're not doing a good enough job in our knowledge translation. And that's something that we really need to focus on more in this field moving forward.
Tilak Dutta 12:40
Yeah, I'd say the other challenge we have is that, you know, everyone nowadays, when they get their iPhone, or, or things like their products that work really, really well, like the technique, we've been spoiled, I think, with a lot of really high quality, easy to use products. And be because some of the technology we develop is for a smaller, no, no, this is just my personal, you know, opinion on this, it doesn't get as many users so there's not as much money to iterate and improve over and over and over until we kind of perfect these things. They often can be a little clunky, you know, the different types of devices, for instance, my youngest son, he's four, and he has some chat with some health challenges. And we're probably going to need a mechanical lift soon to get him, you know, in and out of a wheelchair and in and out of bed and things. And the lifts that are available. There's, there's basically one, you know, there's adult lifts that are available that can lift, you know, 300 to 400 pounds, he, you know, he weighs, he's right now, he probably weighs about 35 pounds, you know, at the point where we need the lift, you'll probably weigh 50 pounds. But there's only one lift that you can buy, that's for adults, like there's not a pediatric lift, that would be a third the size, that would be more, that would be easier to store in our home. And that would not be as bulky that we could probably pick up and put in the trunk of our car much easier than than these things and take it to grandma's place when we go to visit. And yeah, my sense is that, that there's sort of a you know, we're limited in the development and how fine tuned we can make some of these products because of the limited sales that some of these products get. But, but as Alex highlights, you know, this, these needs are only expanding, you know, we're getting, we're going to have to deal with these problems in society more. So hopefully, that's something that will change. We'll have more we'll have the ability to have more customized devices that fit people's needs more closely rather than using kind of a one size fits all type of solution?
Mary Goldberg 15:04
Yeah, I'm thinking about the converse of that. So consumer technology like something like the iPhone where the markets not limited at all right, their sales are crazy and curious about what role and obviously the iPhone is just one example. But I'm thinking voice assistant technology and others, the role that consumer technology plays in bringing assistive technology to the masses, I would expect, in some ways it helps. And in others, it may continue to contribute to disparities in leaving people behind. And just curious, your thoughts on that as a polarity to what you were just talking about with a small market?
Alex Mihailidis 15:49
Yeah, I think, you know, it's an interesting question, Mary, and one that we look at when we try to develop various business models now and assistive technology, particularly in the work that we're doing around technologies for older people. Because if you look at the majority of technologies being developed to support this demographic, many of them would not really be, you know, they're not classified as your typical assistive technology. They're not medical devices, they don't have to go through the same regulatory process, as say, you know, a powered wheelchair would have to be or your more, quote, unquote, classic assistive technology. And that's where, you know, we really been trying to work with the consumer market, right to get there, well, how do we get these technologies in the hands of caregivers and older people by just allowing them to go buy them themselves? Install them? So for example, you know, one of our big partners is Best Buy, right? And because BestBuy, you know, at least in the US right? Now, they actually have an online marketplace for older adults, where you can buy fall detection products, etc, directly from them. And so, you know, that's a that's a business model we're looking at now, obviously, you're right, if we go purely consumer marketplace, and the cost has to be buried by the consumers themselves, and this is not going to be equitable for everyone. And so it's really trying to find that right balance, about how do we ensure that they are accessible, but that equity is also taken into account?
Mary Goldberg 17:27
Tilak, did you want to add anything to that, too?
Tilak Dutta 17:29
Yeah, I think that the other way to look at it, I always think about, you know, if it's something and I totally get your point, Alex, like, we want things that work for everyone. And it just so happens if we design things that are good for everyone. And it just so happens, they also work for people with some type of impairments. And it helps in particular ways for those people. That's the the winning goal. You know, maybe it's okay, that when these technologies come out, at first, they're more expensive, and people pay more for things at first, but then they get refined, and then the next generation of them will be less expensive, and everyone would would benefit from it.
Mary Goldberg 18:10
Yeah, I agree with this at the points. Thank you for that. Well, I've enjoyed very much learning from both of you, you're both really successful and experienced in this aging in place arena, especially related to research and development, but also making sure these great products, whether that be technology or standards, get into the hands of users and actually implemented, what advice do you have for others who are going into this space or spaces plural?
Alex Mihailidis 18:40
First and foremost, when someone comes into my office, and they want to explore get into this area? You know, I asked them why, right. And really having that motivation. To do this into, you know, stick in this areas is really, really important. And often time motivation does come from personal experience, you know, a lot of us have that personal experience in our own lives. That, you know, really keeps us driven to develop better products. You know, the other piece of advice is don't take the ferry for granted. It's, you know, yes, the population is aging, right. And the story I always get from startups is, well, our business model is, you know, the older adult population is going to increase by 10% per year, therefore, our revenues are going to increase by that, etc. That's not true. You know, it's a very tough demographic actually to work with and not not in the way that they're resistant. They're fantastic to work with as individuals, but as a population, it's a very tough population to design for and understand their needs because older adults or older adults are not homogeneous. It's a very heterogeneous group, and people need to realize that as soon as they come in, so I would say that so one had the passion but to also recognize the challenges They're great challenges to have, but recognize that it's not a slam dunk, just because that demographic is increasing.
Tilak Dutta 20:06
I would just add that it's, you know, what I tell all my students is whether, you know, you've dealt with a challenge like this in your life, whether someone you know, has a disability or has some sort, you know, chronic illness or something that they're struggling with, you will have you know, someone close to you or yourself, you will have to deal with this in your own life, and finding, you know, finding creative ways to solve these problems. Is you will all have to do it well, we'll all have to find a way to struggle through these these situations on our own, and finding ways that we can help each other solve these problems is, you know, I think I think it's one of the one of the challenges that we all will undertake one way or another.
Mary Goldberg 20:59
Great advice. So I'm hearing to have the passion, some flexibility, the understanding and the creativity, and you're good to go, right. Yeah, it's not quite a circuitous path, I think for many of us, but in an area that is very much in need. And I hope that our listeners enjoy listening to you and your stories as much as I did. So thank you, again, so much to both of you. If our listeners would like to learn more, where should they go?
Alex Mihailidis 21:29
Well, obviously, they can go the KITE website. Google KITE Toronto Rehab and they'll find the site and a lot of our projects. The AGEWELL site, again, will have a lot of information. And that's just www.AGEWELL-nce.ca. But again, you can probably find us by googling us. And then my lab is www.iatsl.org. And that's my own personal research there.
Tilak Dutta 21:58
Yeah, and then our lab is called engineering health and it can be found at engineeringhealth.ca.
Mary Goldberg 22:03
Wonderful. And I assume on both of these pages or your individual sites, there would be contact information for you as well.
Tilak Dutta 22:10
That's correct.
Mary Goldberg 22:13
Excellent. Great. Thanks again.
Tilak Dutta 22:15
Thanks so much for having us.
Mary Goldberg 22:16
If you like ImpacTech please review us on Apple podcasts or wherever you listen to podcasts. Thank you again for tuning in and continue to make an impact in whatever you do. A quick note from our sponsors. IMPACT initiatives are being developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research. NIDILRR is a center within the Administration for Community Living Department of Health and Human Services. IMPACT initiatives do not necessarily represent the policy of NIDILRR, ACL or HHS, and you should not assume endorsement by the federal government and the same goes for the University of Pittsburgh. We would like to thank our ImpacTech guests and our production team led by Dr. Michelle Zorrilla at the University of Pittsburgh Department of Rehabilitation Science and Technology.