Becoming the Patient — Dr. Alex Mihailidis

Alex Maheux:

Hi, and welcome to the CHIP, the Canadian Health Information Podcast. I’m your host, Alex Maheux. This show from the Canadian Institute for Health Information will give you an in-depth look at Canada’s health systems and talk to experts you can trust. If you’re interested in health policy, our health care systems and the work being done to keep Canadians healthy, this podcast is for you.

Today we’re talking with Dr. Alex Mihailidis from Toronto’s University Health Network. Alex is a senior scientist at UHN Network’s KITE Research Institute, a professor at the University of Toronto, and Scientific Director of the AGE-WELL Network of Centres of Excellence. His research focuses on supporting older adults to live more independently and safely in their own homes and communities. He uses artificial intelligence to monitor wellness, and develops tools that can automatically predict changes in health. We’ll also talk with Alex about a life-changing event he overcame a few years back that put him directly in his patient’s shoes. He’ll talk to us about how the accident changed his perspective on the work he does and inspired him to think differently. Let’s get to it.

Hi, Alex, welcome to the podcast. Thanks for joining us today.

Dr. Alex Mihailidis:

Great. Thanks for having me.

Alex Maheux:

So, you spent nearly your entire career working to support older adults to live more independently and safely in their own homes and communities. What made you decide to focus your career on home care? And also, why is it so important for seniors to stay at home as long as possible?

Dr. Alex Mihailidis:

So, my story, you know, starts obviously back in my undergrad days where I was going through mechanical engineering. And in fact, I was actually training to go into aerospace. And so, all my internships and jobs were in aerospace engineering. Unfortunately, though, when it came time for me to graduate, aerospace essentially left Canada, so there were no jobs and I was laid off from my position in aerospace.

So at that point, I really had to decide what I wanted to do. And ultimately, I decided to go back to do graduate work. And one thing I learned in my internships and working as an engineer is that I really wanted to apply my engineering skills in a different area that allowed me to interact more with real people, working on real-world problems that I can come up with solutions for. And so, I decided to go back to do my graduate work in biomedical engineering, in particular in the area of rehabilitation.

The way I landed on my research of home care and technology to support people in home care was actually through a chance meeting with an older gentleman who was also an engineer. But the conversation I had with him was not about engineering things or what we do as engineers, but was as his role as a caregiver. His wife had early onset Alzheimer’s disease and he was telling me about all the difficulties he had taking care of her. How he had to stay with her at all times and provide prompts and reminders and often be in very difficult situations such as being in the washroom with her to provide this kind of support.

As part of this conversation, you know, he said, “You know, wouldn’t it be great if computers could do all this for us?” So essentially, that idea kind of stuck with me and I approached my supervisors and said, “Well, I’d like to actually build a smart home that can support older people with dementia through these common, everyday activities.” And my supervisor back then was open enough to say, “Sure, let’s go for it.” So, that was 20 plus years ago, and my research program has really built from that.

To address your second question, the reason why I still do this and I continue to build that program is, you know, everyone wants to stay at home. This is not an older adult problem; this is an issue for everyone. We want to stay in the places that we’re comfortable. We want to stay within our social circles. We want to stay in close contact with our families and our loved ones. I don’t think anyone has ever said, “Hey, I’d love to leave my house and end up in a hundred square foot room with a bed and maybe a side table in long-term care or a nursing home.”

Alex Maheux:

Mm-hmm. Surrounded by people you don’t know.

Dr. Alex Mihailidis:

Exactly. And the research itself shows that staying at home is better for everyone with respect to your health and wellness, and not just physical, but mental health as well. And so hence we continue to work towards that issue and see how technology can play a role.

Alex Maheux:

That’s really important work. Alex, you’re leading researcher at KITE, which is Toronto Rehabilitation Institute’s research wing, where you’re using AI and technology to advance home care developments and improve the lives of people hoping to stay at home longer. Can you tell us a little bit about the innovations you’ve developed in the past and what you’re currently working on?

Dr. Alex Mihailidis:

Sure. So we’ve done a lot of work around smart homes. Smart homes that can actually learn and adapt to the user, that’s where the artificial intelligence comes into play. So for example, we’ve developed technologies that can monitor older people with Alzheimer’s through common self-care activities, whether it’s washing your hands, brushing your teeth or even making yourself a cup of tea, and providing those prompt reminders to that person just like a caregiver would. But again, the AI plays the role of learning about the person and their preferences, their abilities, their disabilities, and it takes that all into account to change the way that it interacts with the person. It tries to personalize the technology to the individual, which is really, really important for people with not just Alzheimer’s, but really anyone with a cognitive impairment.

We’ve also done quite a bit of work around detecting falls automatically in the home. So even right now, the gold standard for fall detection is still a worn device that the person needs to activate and then call for help as needed. So we’ve automated that by using sensors in the environment, nothing worn on the person, that automatically detects the fall and then using artificial intelligence and speech recognition, can determine how injured the person is and who to call.

Some of the more recent work we’re doing is expanding that but more on the predictive side. So, while it’s fantastic that we can detect a fall automatically and call for help, really the Holy Grail is predicting who may be at risk of falling and then putting interventions in place. So we’ve done quite a bit of work expanding our role and our working machine learning to add that predictive component. For example, we had a project a couple of years ago where just based on the motion patterns of people in the home, with about 90% accuracy we’re able to predict who may be developing cognitive impairment such as dementia or Alzheimer’s disease.

We’re also doing a project right now in a care facility at Toronto Rehab, where we’re predicting aggressive behaviour in residents. And so now that we can inform the staff before something happens and there is an incident of resident-on-resident violence, or resident-on-staff violence, which we often hear about in the media.

Finally, kind of more on the rehab piece, we’re doing quite a bit of work these days around new technologies to help people who have had a stroke or brain injury or some kind of other medical issue that’s resulted in physical disability. So for example, using robots to do rehab of the upper limbs, so the arm, the wrist, the hand and more recently a very simple glove that you can put on that helps people with issues with hand function, to help rehabilitate the hand but also for them to use their hands in daily functions as they do something as simple as picking up a cup or water or something.

Alex Maheux:

Mm-hmm, that’s very interesting. And I think I read some of your work before, and I was reading about this tile that you developed for the bathroom that also is able to read blood pressure and then send those results back immediately to the person’s doctor. And I think what’s really interesting about your work is the fact that you’re using data to help guide those decisions, but then you’re also getting even additional data from what you’re developing. Can you talk to me a bit about the role of data in the work that you do?

Dr. Alex Mihailidis:

Yeah. So data is paramount in everything that we do, especially when we do work in artificial intelligence or machine learning. The algorithms and the systems we build are only as good as the data that they’re training on, right? So we try to collect data from all these various sensors, whether they’re in the environment or on the person, and we use those data to train our models in order to bring that personalization in.

That’s really important these days, as we see the growing proliferation of the use of artificial intelligence in health where the goal is to ultimately come up with personalized health solutions for individuals, and the way we do that is on the data itself. So that’s become a really important part of our research, not just the collection of the data, but understanding how to use the data, the way to collect the data, the way to store the data so that we’re maintaining privacy and security, but also then how to share data with our colleagues around the world so that we can all be working together to build the best solutions possible.

Alex Maheux:

Yeah, and it sounds like we’re moving towards a place where there will be a lot more collaboration. And not just across the world, but also across different silos that might exist in the health care system?

Dr. Alex Mihailidis:

Mm-hmm. Exactly.

Alex Maheux:

So the important work that you’re doing at KITE was unexpectedly put on hold a few years ago due to a pretty life-changing event. Can you share with us what happened in August 2019?

Dr. Alex Mihailidis:

Yeah. No, absolutely. It was a typical weekend up at our cottage, you know, my son went off hiking with another friend, kind of up on these cliffs that we have there. And unfortunately, my son, who was nine years old only, got in a position where he got stuck on a ledge that was starting to give out. So obviously, he started to panic and he called for help. And as I climbed up to get him off that ledge, and thank goodness he was safe after that, the ledge that I was now standing on, unfortunately gave out and I fell down the cliff about 30 feet. And so, from that, obviously, I sustained some very serious injuries such as several broken vertebrae, a broken pelvis, broken ankle, broken sternum. And then the result of that is an incomplete spinal cord injury at the L3 level.

Alex Maheux:

Wow!

Dr. Alex Mihailidis:

That obviously changed things, but the ultimate thing that resulted from that is I ended up being a patient in the rehab hospital that I’m also a scientist in. So I spent three months as a patient at Lyndhurst Hospital, which is part of Toronto Rehab, and basically regaining function and learning how to walk again, and really, going through a lot of the issues that I’ve only seen from the researcher side when I’ve worked with research participants. So as you can imagine, that was quite an eye-opening experience for me.

Alex Maheux:

That’s a pretty unbelievable and terrifying story. What were you feeling and thinking when you were being airlifted to the hospital?

Dr. Alex Mihailidis:

Yeah, well, the airlifting part, I wasn’t really thinking much. They gave me the horse tranquilizers there to stop the pain.

Alex Maheux:

I guess once your thoughts were back.

Dr. Alex Mihailidis:

Yeah, once my thoughts were back was, you know, amazingly my thoughts immediately returned to my work. And not at the point of oh, I need to get the research done, because, you know, I knew I had a great team of students and other researchers around me that would continue that, but more looking at it differently. And when I end up finally being in the rehab hospital and going through rehab myself, my eyes were open to actually what a poor job we have done as researchers to translate our findings into clinical work. It was amazing that all the clinicians I worked with didn’t know anything about the research we were doing. Didn’t even realize there was a research lab in the basement of the hospital that I was in.

Alex Maheux:

Right.

Dr. Alex Mihailidis:

And so, you know, again, that really changed my attitudes and just made me think that we really need to do a better job with respect to that. And, you know, we’ve always tried to have a user-centred approach in our research and include people in the work that we’re doing who would eventually be the users of the technology. But again, I just realized we weren’t doing it in the right way. We were not targeting the right things in rehab. And we decided to rethink that model, and that’s really what I spend a lot of my time these days now thinking about as my students and everyone else continues with their research.

Alex Maheux:

Right. I want to dive a little bit deeper into the experience you had as a patient and what it was like going from expert to patient. What are some of the learnings you saw? What were some of the gaps in the system that you maybe weren’t aware of before and certainly were as a patient?

Dr. Alex Mihailidis:

Yeah. Well, we spoke about data earlier, and what I discovered is the significant gaps in the sharing of data. So as you can imagine, I was airlifted, actually, to Kingston General Hospital initially, and then I was moved to Sunnybrook Hospital, and then I was moved to Toronto Rehab. During that time at Toronto Rehab, I had to go back to Sunnybrook for a few emergency issues, but the data never followed me. I was always being asked the exact same questions over and over again. The same tests were being run.

Alex Maheux:

Mm-hmm.

Dr. Alex Mihailidis:

And in fact, one thing about the experience was there could have been a very serious medical outcome for me because the surgeons at Sunnybrook Hospital did not receive the files from the surgeons at Kingston. And it was only after, I think it was either myself or most likely my wife at that point, raised the issue that they discovered something that, again, if they didn’t know, could have led me down a very, very bad path in my recovery. It was just amazing to me that how there is data being collected, but how it’s not, as I said, following me from place to place. And so, I saw that just as a huge gap and one I would often talk about all of the time with the nurses and everyone else, and also seeing their frustration that how, yeah, the data is out there, but we just cannot access it somehow.

Alex Maheux:

At CIHI, we’re working hard to better incorporate patient voices into the work we do because ultimately it will mean we’re able to produce better and more meaningful data and analysis. And like you said, really be able to incorporate what’s happening at a personal level. What has your experience changed about the way you go about the work that you’re doing?

Dr. Alex Mihailidis:

I think one thing we’re looking at from that data perspective is trying to understand what kind of data we should be collecting, who needs to have access to that data in real time, and also what should that data look like depending on the person?

So one thing, obviously, I learned from my patient experience, is the information that I was interested in seeing in my data was different than what the medical team was interested in.

Alex Maheux:

Mm-hmm.

Dr. Alex Mihailidis:

You know, the information that my wife and family wanted to see was different maybe than what I was interested in. And so that customization of data, I think, is really an important aspect, and the way of keeping everyone in the loop that needs to be in the loop as well is really critical moving forward. So that’s one thing we’re really thinking about now.

So as we collect all of this data from our smart home systems or sensors or our robots, etcetera, you know, how do we make that data available to the families? How do they want to see the data? How do we make that data available to the family physician, perhaps, of the older person? And then how does the person themselves want to see their own data?

Alex Maheux:

Mm-hmm.

Dr. Alex Mihailidis:

And then layering on top of all of that maintaining the privacy and security that’ss required is really critical.

Alex Maheux:

A year-and-a-half out of your accident, how are you feeling?

Dr. Alex Mihailidis:

I’m doing okay. You know, I’m still, I do physio every week, still doing a whole bunch of medical appointments and really still trying to strengthen myself. And really, perhaps most importantly, just learning to live with the outcomes of the spinal cord injury itself, which I still have and it’s going to be with me for the rest of my life and, you know, figuring out how to deal with that. And yes, technology does play a role in the things that I do here, but things could have been much worse, obviously. So I’m grateful for that and grateful that I am here still hanging in. And being able to talk about my journey with you and others, I think not only helps me in my recovery, but I think also helps other people as well.

Alex Maheux:

Mm-hmm. We’re grateful to have you here talking to us about it. So I guess not long after your recovery or your accident, you were then thrust into a global pandemic.

Dr. Alex Mihailidis:

Yeah.

Alex Maheux:

How has COVID affected you, as well as your work?

Dr. Alex Mihailidis:

So in terms of me personally, you know, to be honest, it really hasn’t impacted me that much in terms of the change in lifestyle and the change of working, because I was basically working that way for four plus months of recovery. Even when I came out of the hospital, I had to work remotely and kind of build up that ability. So in a way, I was quite prepared for the shutdowns and everything else that the pandemic brought on.

Even from a mental health perspective, I had to learn a lot of strategies in the hospital to cope with the mental health side of things, and I’ve carried those strategies forward with me even during these times of the pandemic, right, in terms of the isolation, lack of activity, etcetera. So I think in a way it helped me prepare for what’s happening right now.

In terms of the work, you know, our work continues. However, we are looking at how we can apply some of our technologies for other situations and environments. So for example, long-term care. If anything has come out of this pandemic, it’s shone a light on the miserable state of our long-term care and the care of our older adults here in Canada. And technology can play a role there as well. So while we talk about using technology to help age in place, well, what we’ve discovered is aging in place can happen in your own home, but it can also happen in a long-term care facility. So, how can we use this technology to not only overcome the issues that the pandemic has shown that exist in long-term care, but moving beyond the pandemic as well?

Alex Maheux:

Mm-hmm. Well, I was actually going to ask you about that. Have there been any new partnerships or cross-collaborations that have come up that have allowed your technologies that you’re working on to be used in different settings? Like you mentioned long-term care homes.

Dr. Alex Mihailidis:

Mm-hmm. Yeah, no, absolutely. So we have been approaching and have been approached by various care facilities and care providers. We’ve been in discussions for example, with the City of Toronto about how technology can play a role in their facilities. And so, we’re taking a look at the technologies that we’ve developed, not only in my own lab, but also in the research network that I run, AGE-WELL, to see which solutions we can be implementing right away.

Alex Maheux:

I want to circle back, you mentioned mental health. How has some of the challenges that we’ve been talking about in terms of mental health, especially during the pandemic, how have some of those findings been useful for you in the research you’re developing?

Dr. Alex Mihailidis:

What we’ve actually done, is we’ve been looking at that issue of mental health and some of the key causes of poor mental health with respect to residents in long-term care and other older adults. And a lot of it is coming down to social isolation. And so, because of that, a key aspect we’re looking at is how can technology play a role in reducing social isolation? How can something as simple as iPads or other tablet devices be used to ensure that older people are staying connected with their loved ones, with their social circles, etcetera?

So part of that is on the tech development side, but a lot of that is also on the service, delivery and education piece as well that we’re looking at, again through my own research and the research network, AGE-WELL, to help bring that technology to those individuals and not just deliver, but obviously teach them on how to use it most effectively to help support themselves and their own mental health.

Alex Maheux:

Right. And I’m sure there’s quite a few challenges that come along with that. Outside of COVID-19, what are some of the biggest challenges in home care right now? And I guess also on the flipside, what are some of the biggest opportunities?

Dr. Alex Mihailidis:

I think one of the biggest challenges of home care now is the resourcing. There are just not enough people to provide the proper home care that we need. This is not just on the paid caregiver side, but on the family caregiver side as well. You know, it’s not unusual anymore that you have the kids living in Vancouver, trying to provide care to their elderly parents in Toronto. And so again, how do you help them provide that care in an effective way? And that’s where, again, technology presents itself as an opportunity.

Even in situations where a family caregiver is looking after one of whether it’s their spouse or their parents or whatever else, technology can play a huge role in helping those caregivers to be able to return to work, for example. And so what we’re seeing as opportunities are companies coming to us and saying, “Well, what if we offer a smart home system as part of the benefits package to our employees so that if they are a family caregiver, they can access these technologies, have them installed in the homes of the person they’re providing care to and that way they can return to work but at the same time still be monitoring, so to speak, their loved one to make sure that they’re staying safe and healthy and well in their own homes?” So, you know, I see a lot of opportunities coming out of the pandemic, but a lot of opportunities to continue to improve home care in Canada.

The final thing I’ll say is, obviously, there’s big issues in the North, there’s big issues in our Indigenous communities on how to provide care to their elders and their aging individuals as well. So that’s another opportunity that we really need to be looking at seriously moving forward from the telehealth side and the role of technology.

Alex Maheux:

Yeah, absolutely. How can we best collectively respond to the big challenges, some of the ones that you mentioned, you mentioned Indigenous communities as well, across Canada’s health systems, while keeping in mind and putting the patient at the centre of it?

Dr. Alex Mihailidis:

First and foremost, we need a collective national strategy around this. And so, you know, we’ve done quite a bit of work within the AGE-WELL network to do that in trying to really get the academic community working closely with industry, working closely with government, and then obviously working very closely with the key stakeholders, whether they are older adults, caregivers, home care providers, etcetera, to kind of really understand where things can go, what the opportunities and possibilities of technology are, and then to get us all on the same page.

To be honest, that’s the toughest part of my research. I tell my students all the time, which the engineers don’t like to hear that, that the technology is the easy part, right? We can build a better sensor, we can build a faster algorithm, we can build a better robot. But if we don’t understand and get on the same page around the policy and the regulatory aspects of these on the service delivery models, then these devices are just going to sit in the lab and collect dust.

Alex Maheux:

Mm-hmm.

Dr. Alex Mihailidis:

And trust me, you know, you can come down to my lab and I will show you technologies collecting dust because we did not take those things into consideration. And that’s another big learning I had from being a patient or a consumer of our health care system as well. You know, there is a lot of work to do, but some great opportunities and I think we’re at that right moment in time right now where people are standing up, they’re realizing that the true problems we have within our health care systems, the issues that we need to resolve to better support our aging population. And by doing that, everyone’s going to benefit. And again, hopefully technology and my team and the AGE-WELL network and others across Canada will be part of the solution and Canada can really be a shining example to the rest of the world on how innovation can play a strong in health care.

Alex Maheux:

Thanks, Alex. We can’t wait to see what’s next for you and your team. And thanks again for coming on the podcast and talking to us about this incredible and life-changing research you’re doing. It’s been truly inspiring.

Dr. Alex Mihailidis:

Great. Thank you very much, Alex.

Alex Maheux:

Thanks for listening. We hope you enjoyed this episode. Check in next time when we bring you more valuable health perspectives and continue to chip away at health care topics that matter to you.

If you want to learn more about CIHI, visit our website: cihi.ca. That’s C-I-H-I-dot-C-A. If you like what you heard, subscribe where you find your podcasts and leave us a review and give us a follow on social media.

This episode was produced by Jonathan Kuehlein, with research from Amie Chant, Marissa Duncan, Shraddha Sankhe and Ramon Syyap. I’m Alex Maheux, thanks for tuning in to the Canadian Health Information Podcast. Talk to you next time.

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