Shift by Alberta Innovates
Shift by Alberta Innovates
Unlocking the power of health data: privacy, policy, and progress
Mark Korthuis, President and CEO of the Glenrose Hospital Foundation recently sat down with me to discuss a panel he'll be moderating at Inventures 2024 called Rethinking Approaches to Unlocking Health Data.
In our discussion, Mark sets the stage for what the panel will focus on: navigating the terrain between privacy concerns and opportunities that, if missed, could set health systems back as the world embraces the ubiquity of artificial intelligence, quantum computing and other technologies we've yet to imagine.
Mark provides invaluable insights into the transformative potential of collective governance and the imperative for a fluid exchange of health data across care settings.
Our conversation is only a teaser for the panel that should be a beacon for clinicians, patients, entrepreneurs, policy makers and anyone interested in data and healthcare innovation, seeking to understand the intricate balance of data accessibility and patient care.
In addition to listening to the podcast, check out the Interoperability Saves Lives report on the Alberta Virtual Care website.
Welcome to Shift!
Shift by Alberta Innovates focuses on the people, businesses and organizations that are contributing to Alberta's strong tech ecosystem.
Greetings, friends, fellows and country people. It is I, john, with Shift Data data everywhere, anonymized. You will be Data, data in my care, used correctly, the value you will see. Today we're diving into InVentures and a panel that's going to be focused on data and the proper use of it and where we could go wrong if we don't use it. Welcome to Shift. Ladies and gentlemen, today I have Mark Korthias, the president and CEO of the Glen Rose Hospital Foundation, with us. How are you doing, mark?
Speaker 2:I'm doing fantastic. Great to be here.
Speaker 1:Thank you very much for taking the time and joining us Now. As I understand it, you've got a panel coming up at InVentures and the title of the panel, or the working title at this point, is Rethinking Approaches to Unlocking Health Data. You're going to be moderating that panel with some other I think a colleague from Alberta Innovates and some other individuals. Can you tell me a little bit about what people should expect from this panel, from the discussion?
Speaker 2:Yeah, absolutely it was interesting. Expect from this panel, from the discussion? Yeah, absolutely it was interesting. I was invited to a Alberta Innovates event a few months back and there was a panel at the event and it was with Tim Murphy, who's the vice president with Alberta Innovates, and a gentleman by the name of Dr Ewan Affleck who's been leading this health data work and was one of the physicians who actually built out a fully integrated health data system in the Northwest Territories, one of the physicians who actually built out a fully integrated health data system in the Northwest Territories, one of the first in Canada.
Speaker 2:And I was at this event with Helperd Innovates and I was listening to Tim and Ewan talk about health data and for me, I've had a pretty cursory level knowledge of health data. I understand that data is important across all disciplines, health in particular. But listening to Tim and you and talk at that event, I was really captured by the work that they were doing, in the way in which they were trying to rethink the notion of health data. You know, one of the big misconceptions I think they're trying to undo is that the only consideration to think about when it comes to health data is the privacy consideration, so ensuring that your data is private is of utmost concern consideration.
Speaker 2:But what Tim and Ewan and a number of other individuals across the healthcare system, academia and industry have done is starting to unpack some of the other related harms that come with suboptimal data capture in the healthcare system, and so they've produced a series of reports, which we'll speak to in VentVentures, with the panel talking about some of the other forms of harm that occur when you don't have the right data or optimal data at your fingertips when you're a clinician or individual that's dealing with patients, and so the notion of the forms of harm outside privacy really piqued my interest, and you know, at our hospital, the Glen Rose Rehabilitation Hospital, our foundation we've very much been focused on health innovation, the utilization of health technology to improve outcomes for patients, and data is the lifeblood of health service, and so I have a particular interest selfishly, in my day job to ensure that we're able to have data cut across multiple domains so that we can ensure that those that are providing care have the best information at their fingertips.
Speaker 2:So that's, in a nutshell, what the panel is going to be discussing.
Speaker 1:Okay, so now, when I think about health data and privacy and everything you've just mentioned, I think about when an individual's in the hospital and maybe they transition from room to room or ward to ward, and oftentimes you'll see there's a repetition of questions they don't have. Maybe they don't have access, or it appears sometimes that the access isn't there to the patient data. Is this some of the stuff you're talking about?
Speaker 2:EMRs, emergency medical records, that sort of thing Absolutely, and not only in one healthcare setting, but as a patient. We're all patients. We go and visit a number of different clinics and sites, and they live within different systems and institutions, and sometimes those institutions aren't, oftentimes those institutions aren't able to share data in a frictionless way, in which it's provided to those that need it in a timely fashion and in a way in which they're able to capture as much data as they possibly can. And so it's not only inside single sites hospitals or clinics but it's ensuring that we have the mechanisms and technologies in place so that we can share data across multiple domains, whether that be in hospital settings, primary care or even in private settings as well.
Speaker 2:And so you know, I think a lot of folks have tried to tackle this problem over the years, and they've looked at it from purely a technological lens or, you know, thinking about the financial constraints or the privacy concerns and or the resistance to change.
Speaker 2:But you know, what Ewan and Tim and others have been really pushing which has personally interested me as well is that this is really a human interoperability issue in the ability for individuals across systems to coordinate and govern health data in a different way. And so you know what Tim and Ewan and the Alberta Virtual Care Coordinating Body, which is the consortium that's leading this work, have been saying is that we need to have a different governance approach to how we try to tackle this problem, because, even though the technical challenges are difficult, it's really how we govern and think about this work and need to think about this work in a different way that needs to be first addressed before we tackle everything else, and so they've been utilizing what's called a collective impact approach, whereby there's not one single entity that's responsible for this work. It's across a multitude of domains that's going to help solve this problem, and so that's been really interesting to me as well.
Speaker 1:I'm sure. Now, what role does the patient play in all of this, because you're already talking about multiple partners coming together and solving this problem.
Speaker 2:Yeah, and that's very much been a focus of this work as well, and I know Dr Affleck and Tim have very much ensured that as part of their reports, that the patient voice is at the table right at the beginning, and what they've been recommending is ensuring that.
Speaker 2:You know, everything is designed with the patient in mind.
Speaker 2:So very much patient-centric, and I know the healthcare systems, yeah, have been espousing that mantra for many, many years patient-centricity.
Speaker 2:But we very much live in a system that is based upon the service providers, that is centered around, and so the health data interoperability work is very much inclusive of patients and keeping that at the center. Because you know as much as you can talk about, you know the pedantic technological terms and get lost in all of the nuances of what health data is, what interoperability means. You know the ultimate goal is just to ensure that when somebody is in need of healthcare services, that they're able to receive the best care possible, and information provided to the clinicians about past experiences health history is critically important to ensure that happens, and so that's. You know, the crux of what this work is trying to undertake is ensure that patients receive the best care possible, and in order to do that you need to have them at the table at the very beginning of the work and throughout the process to ensure that you know we don't just repeat our past histories around making it service centric, not patient centric.
Speaker 1:Yeah, and what I find interesting about all this you know I've got a very superficial understanding of, you know, health data. But I'm also the quickest guy to slap my visa onto a website when I want to go buy something. And then I think about health data and I'm like, oh you know, all of a sudden you kind of people tense up a little bit, Mm, hmm. But on the flip side, you know, we can just be quick to put all sorts of data out there. Social media is a perfect example of that as well. How do you, from your perspective, how do you think about that, reconciling those two sort of difficulties?
Speaker 2:Yeah, it is an interesting philosophical question because you're right. It is an interesting philosophical question because, you're right, you know we've really let go of our privacy, you know, across all of the technologies that we utilize is understandable, because individuals don't want their health data to be made public or to be released to anybody that they haven't given permissions towards, and so I think what the work that Tim and you and the Alberta Virtual Care Community Body are trying to highlight to the community and the public and to government and policymakers, is that privacy is but one risk factor to consider when we're talking about health data. There are a number of other related harms that aren't considered whatsoever and need to be considered, and so you know simple things like not having the proper health information at your fingertips. If you're a clinician and then giving a patient a medication or some form of treatment, that is going to have a adverse effect based upon their health at that point in time, and so that is another form of harm health at that point in time and so that is another form of harm. And Tim and Ewan outline nine different forms of harm in one of the recent Health Data Interoperability Saves Lives report, and that's what we're going to dive into a bit more, and I think, more than anything, if this work is to be successful, it's through advocating to policymakers and government officials that there's a number of other factors to consider when we think about health information and health data than simply privacy. But it's a part of a public advocacy campaign as well, because you also have to educate the public, yourself and myself included.
Speaker 2:Yourself and myself included, because you know, up until nine months ago, before I heard you and tim talk about this, I never I was like you were, or I was like the general patient.
Speaker 2:Where I'm like, privacy is the biggest issue as it relates to health data and I I'm going to stop thinking about it because it's legislated and I am. It's about my pay grade to go start thinking about how to change legislation, but then when you start thinking about the other forms of harm or when that's brought to your attention, it's a really interesting new set of information for you to look at and go huh, and then you start to reflect upon your experiences in the health care system, and then the experience that maybe some of your family members had, and you start to reflect on well, maybe the best data wasn't presented at the right time for my dad, for example, who was diagnosed with stage four brain cancer glioblastoma, and there was any number of incidents along his journey that I reflected on going. Yeah, there's probably some forms of harm related to the suboptimal health data that was presented at critical junctures in his recovery or attempted recovery that would have been more important to have rather than just have his privacy contained, you know.
Speaker 1:Yeah Well, first off, I'm sorry to hear that. Secondly, the way you articulated that made me think of family members of mine who have been through treatment care. Those critical junctures Like that, to me is key, because there have been many points where I'm like, hey, yeah, but what, what, if, why, you know? And so this, this is obviously critical work to be undertaken, and you've kind of implied the answer to my next question in your previous statements, but I was going to say who would be the ideal attendee for this session. I'm hearing like public, obviously, because you need to advocate policymakers, but entrepreneurs there's that noise I said I wouldn't make. No, it's fine. Who do you think should be coming to your session to learn more about what are you talking?
Speaker 2:about Anybody that's interested in health innovation and the utilization of health technologies to improve patient outcomes. So innovators, technologists, entrepreneurs or startup companies that are thinking about utilizing health data as part of their platforms, I think it's important for them to at least listen and understand that there are people working towards ensuring that we have better access to better data that's ultimately going to help improve their service and company. Policymakers, you know, most definitely should come and listen, especially around the nine forms of harm around health data that we are not talking about whatsoever, and that is a critical consideration for them, especially now in Alberta, when the government is transforming the health care system. This is an opportune time for them to rethink some of the legacy policies that have been in place, and, you know, across a lot of these domains, we are, you know, utilizing analog policies in a digital world and it's time to upgrade the software system, and so policymakers, government officials should definitely be there, academics as well, who have an interest in health information systems, health data and just system thinking generally would be interested.
Speaker 2:Those that are interested in systems and governance and how to coordinate a complex array of stakeholders to achieve an outcome without having one centralized hierarchy saying that they're in complete control of the work. Those people would be interested, like that's.
Speaker 2:What really interests me is how do you decentralize decision making in a way that can still ensure that the work moves forward, and I think that's what the collective impact model governance structure here represents, and so I mean it's a fascinating topic, and I would say that Tim Murphy and Ewan Affleck and the third panelist, ray Yu, who is an entrepreneur, are incredibly insightful individuals who have done the work, and Ewan, in particular, has the scars to prove it from his decades long efforts in the Northwest Territories, and so I think it's going to be a very thought provoking panel, with individuals who have a depth of knowledge that's really probably unmatched in this space in Canada.
Speaker 1:That's really profound and I think it should make for a great discussion. And I'm not going to ask you what those nine areas are, because we want people to go and check out the panel, but for those attendees or for those people that don't make it to InVentures, well, bummer, no Will. I think it's fascinating and I'm sure there's content that people can get off the Alberta Innovates website, or we'll write an article about the follow-up, or maybe Mark will follow up with you post-event and talk a little bit more about this where we can reveal some of those secrets. But I just quickly want to understand a little more about you. So you're the president and CEO at the Glen Rose Hospital Foundation. What's your background? Where'd you come from? How'd you get this gig?
Speaker 2:Yeah, you know, like many people, I stumbled into it. You know, over time, you know, I don't think I ever set out 20 years ago after university that you know I'm going to be the president and CEO of a hospital foundation. You know I'm going to be the president and CEO of a hospital foundation, yet this is the second role in which I've been the president and CEO with a BA in psychology, even though it was, you know, I was there for soccer first and then at the end I thought, oh, I should probably really try to get out of here with a degree. And so I had always had an interest in health and well-being and mental health, and so I'd spent a lot of my career actually working on delivering virtual education programming to residents of the far north in Saskatchewan, indigenous communities in particular. And so I've always had an interest in the utilization of digital, of technologies, to provide better access to, you know, education, better access to education, healthcare, etc. And so, over time, it was natural for me to move into the space where I could work on technology issues as well as health issues, and so I'd previously been the CEO of the Alberta Mental Health Foundation. We had done a lot of work around delivering virtual mental health care and different products and services to really scale out impact.
Speaker 2:And what I learned from that experience was that you know you can't hire enough clinical staff to solve what is a national crisis as it relates to mental illness, and so there has to be different ways to do that that's cost, efficient, scalable and easily accessible, and so technologies offer, you know, a solution in that regard, because they're cheap, they're scalable and they can be utilized in the comfort of an individual's home or community.
Speaker 2:And when the opportunity with the Glen Rose came up, the intriguing aspect of it was that the Glen Rose Rehabilitation Hospital has always been a leader for many decades actually in trying to figure out how to best utilize new technologies to deliver better care for patients that have physical or mental or neurological illness, and so to have a culture like that within a healthcare system, and a massive healthcare system that is Alberta Health Services, was really intriguing and exciting to me, and to be able to have the chance to build on the work that had been done over the years was super interesting.
Speaker 2:And so now to be able to work and support things like brain computer interfaces in the pediatric population, robotics, exoskeletons, working with small to medium-sized enterprises so they can test, trial and validate their new technologies and software platforms is really exciting and, more generally, it's an exciting time in Alberta in the health innovation ecosystem and really in the technology ecosystem more broadly, because there's so many startups. I would say the government, in particular Minister Nate Glubish, who oversees Alberta Innovates file and the technology file, is a tremendous advocate and a very knowledgeable individual who has that portfolio, and Alberta Innovates, through Tim Murphy's office with health, has been doing just a tremendous job in helping to build this ecosystem out, and so for all those reasons, I thought this is a really neat opportunity to be able to help, you know, grow what has already been put in place at the Glen Rose, but also be able to be a part of this great ecosystem here in Alberta.
Speaker 1:Well, it takes a community, and it's sure a pleasure to get to know you, mark, and hear about your background and the work that's going on, and I'm excited to check the panel out. I'll be there and again, thanks for your time. This was great.
Speaker 2:Hey, thanks for having me. I look forward to seeing you in Calgary at the end of May.
Speaker 1:Calgary at the end of May. Shift can be found online at shiftalbertainnovatesca, where you can reach us via email at shift at albertainnovatesca. We can also be found on your favorite streaming service, so dive in and enjoy.
Speaker 2:Until next time, I'm John.
