Your data, everyone's health

Transcript

Transcript

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Megan Beahen: Hi and welcome to Healthy Canadians, your space for nuanced conversations and expert insights about the health topics that matter to all of us. I'm your host, Megan Beahen.

We live in the age where our data is being used all the time by many different sources. The collection of our health data is critical to receiving the health care we need and informing public health decision-making.

Today I'm talking to Chris Allison, Chief Data Officer at the Public Health Agency of Canada, and Elizabeth Toller, Director General, Healthcare Strategies at Health Canada. Although Healthy Canadians is brought to you by Health Canada and the Public Health Agency of Canada, what we discuss won't always reflect the official positions or policies of the Government of Canada. But that's okay; these are conversations, not news releases. Okay, let's talk about Health Data.

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Megan: Hi Elizabeth, Chris. Welcome to Healthy Canadians.

Chris Allison: Great to be here.

Elizabeth Toller: Yeah, we're excited.

Megan: Okay let's jump right in. What is health data? And I'm gonna hand it right over to Elizabeth to start.

Elizabeth: Yeah I mean, health data can be a lot of different things but when you think about it simply, it's information about your health and its information that different healthcare providers need for treatment or diagnosis for helping delivering care. So that can be things about your illnesses or conditions you might have, the medications you take, allergies you have, that kind of basic health information. But there's also something called administrative data. So that's non-medical information that is used to inform healthcare. So, when you're discharged from a hospital, for example, or the number of hospital beds.

Megan: Cool and Chris…

Chris: I get to take it up a level…

Megan: Okay take it up!

Chris: … from health data to public health data because what happens is… So, everything that Elizabeth mentioned happens… Folks go out they see their primary care physician or their chiropractor or whoever and all of that data is looked at from the primary care perspective. Public health looks at things from a population level perspective.

So, what are the trends, what are things happening across health regions? Where are areas of concern in terms of people's health? So, we don't tend to look at specific data like “Chris Allison went into the hospital and saw someone here”. We would look at 50-year-old males in this region. What is happening across that population group? And then we look at: what does that mean in terms of interventions required? This can be along chronic… it might be cancer, it might be cardiovascular health, or it might be infection, right? And diseases like we saw with COVID.

Elizabeth: So, if Chris goes into a public health clinic or to their primary care doctor and gets a vaccine, that gets recorded as your personal health information. But then insights about vaccine coverage would be shared for public health purposes.

Chris: Exactly. Exactly. And a lot of it is… So, again we're not talking about personal health information at that point. It is the aggregated, deidentified… Like, across this region, 75% of people have had vaccinations versus in this other region. Maybe it's higher. Maybe it's lower. And then what do we need to do to make sure that we're hitting our targets, and really protecting and promoting the health of people in Canada?

Megan: Okay cool. So, at the individual level and then the big picture, population level. So how does that happen? How is the data gathered?

Chris: Interoperability!

[Laughter]

Elizabeth: Well, I mean, and it's at its most basic form you go see your doctor. You have a conversation. You'll often see them typing at a computer when they're having an interaction with you. And what they're doing is putting all that information into what we call an electronic medical record.

Or sometimes you might hear it called an electronic health record. That's a system that's used to capture all of that information. We can speak more a little bit later about some of the challenges of accessing that data in those systems but that's the basic way that it's collected.

Megan: And then how do we take it to a population level? That same data?

Chris: In a lot of different ways depending on what you're looking at is the answer. And the trick is how do you do that, right? And how do you do it across literally tens of thousands of different systems that are collecting that primary level health data? And then how do you set it up so that it does flow, and privacy is protected and it's getting to the right levels and it's doing that in a way that is both responsible, ethical and kind of serves that public good.

So, “it's complicated” is the simple answer. In a practical example though within the Public Health Agency we have what we call public health surveillance systems. These are systems that are monitoring different parts of the public health ecosystem. So, you have one on tuberculosis. You have one on childhood health. You have another one on COVID, right? So, each of these systems collects data and gets data in a different way from different partners, all across Canada, right?

So there's the idea that you would start off with a primary health care provider who could be a single medical doctor - could be part of a clinic, could be part of a hospital - and then the information that they are bringing in for that primary care needs to go up into something like a repository that goes across a region. And from there you need to make the hop into a provincial, territorial or Indigenous community data repository. And from there you need to find a way into the federal/national level.

Megan: Okay so we're not talking about two levels - individual and population level. We're talking about multiple different levels, at different levels of government, right?

Chris: Exactly.

Megan: And so, you already used the word “interoperability”, with much enthusiasm I will note. So, I want to talk about that since you just introduced it. Why is that so important?

Chris: Okay, well I want to hear what Elizabeth has to say about interoperability first.

[Laughter]

Elizabeth: Yeah, I mean, it is so critical. So, like I explained before, information gets put into an electronic medical record system. But unfortunately, the way that things are today is that that information kind of gets stuck in that system because the different… the doctors and the physicians… all the different healthcare professionals across different parts of the healthcare system are all using different systems and they don't talk to each other because they don't speak the same language.

So, what we need are common standards to make sure that the different systems that exist out there can talk to one another but also that the data itself… like the water that's going through the pipes… it also needs to be standardized too. So, collected in a similar way and that it's consistent. But also representative of all the different types of people in Canada so that it can be captured in a consistent way and shared.

So, the idea is that me, Elizabeth, going into my primary care office for a checkup or conversation, my data should then be able to follow me wherever I go. If I have to go to the hospital or if I have to go get mental health support, or whatever part of the healthcare system… It should follow me where I go in a secure way and right now it's really not happening.

Megan: I was going to say, so why is that not happening?

Elizabeth: Well, that's… The reason why is because it is the information stuck in these systems that don't… that aren't standardized and aren't able to talk to each other. So that's one of the reasons and that's what we call interoperability.

Megan: And are we working on it?

Elizabeth: Oh yes.

[Laughter]

Yeah, I mean, there's a lot of work underway across the country to try and deal with this problem. We've got all of the Provinces and Territories who have signed on to their own plans but also plans that are multilateral in nature. That they're all agreeing to these common priorities and one of their top priorities is trying to fix this problem of interoperability.

So, they work with organizations like Canada Health Infoway and the Canadian Institute of Health Information who are our leads in Canada for figuring out what these standards are. Looking what other countries are doing, because standards exist all over the world…

Megan: Right. Right, right, right.

Elizabeth: … and trying to harmonize those standards and applying them to the Canadian context, and working with the Provinces and Territories and the companies that create these electronic record systems and making sure that they're all singing from the same song sheet, and able to share that information.

Megan: Cool.

Elizabeth: Yeah.

Megan: So on a practical level, I'm thinking about an example for myself. Recently I went to a travel health clinic to get a travel health vaccine - the yellow fever vaccine - and then later my own primary care physician did not know that, right?

Chris: Yeah.

Megan: Like I kept that record - to be honest I didn't do anything. I just made a note in my head…

Elizabeth: Yeah.

Megan: … but my primary care physician would never know that unless I told her right?

Chris: Yeah

Megan: And she tracked that herself. So ideally in a perfectly harmonized - and I love that word - everyone would know. All the information would be in one place, right?

Chris: Or in multiple places.

Megan: Okay.

Elizabeth: Yes.

Chris: But the right people have got access to the information at the right time to give you the care that you need. And that means it's got to come from systems all over the place.

Megan: Okay.

Chris: Like, a good example of interoperable systems today is travel, right? So, if you want to book a flight, what do you do today? You go on a website. You say: “I want to go from here to there with this many people on these dates” and then you get a list of every potential flight or way that you could get there with all of the prices and everything like that.

Megan: Yeah.

Chris: So that's what interoperable systems look like. So that's kind of the vision for primary care. The issue is we have all of these systems, and we have to do the really hard work on developing the standards. Developing the pipelines that CIHI and Infoway are doing. We need to have the political will. We need to deal with all the potential privacy issues. Because we're not talking about prices and flights. We're talking about your personal health information.

Megan: Right.

Chris: So, all of these things need to come together. The exciting thing is we're at a really cool point in time where that's starting to move.

Elizabeth: Yeah totally.

Megan: You mentioned privacy. I would love to talk about that because I think if listeners chose to listen to this episode, that's one of the top things they want to hear about. So, talk to me about how privacy fits into this.

Elizabeth: Yeah, so privacy is super important, right? Any type of health data collection, use, sharing, it all has to follow a mix of Federal, Provincial and Territorial laws and policies that help make sure that your privacy is protected and also that the security is top of mind, especially in an era of cyber security.

Megan: Right.

Elizabeth: The systems that everybody uses as well, they also have to make sure that they're aligning with the latest security and privacy protocols. Whether it be encryption, or access controls, for example. And those standards that we talked about, they play a role in defining those requirements.

So, the challenge in Canada is that there is quite a bit of variability between all those different rules that exist out there and people interpret privacy rules really differently. Which leads to a hodgepodge inconsistency of how the rules are applied. And that's one of the other challenges as to why health data isn't shared as much as we'd like it to.

Megan: Okay, interesting.

Elizabeth: There's a fear of not sharing data out of fear of not wanting to breach privacy.

Megan: Right.  

Elizabeth: And I think what one of the goals that we have is to actually shift that culture. We have to keep privacy as a top priority for sure, but we need to shift to kind of a culture of effective data stewardship where we actually follow that kind of moral imperative to share data for the public good. Because I think what Canadians need to understand is that, yeah, there's a privacy risk and there are ways to protect that but it's almost an even greater risk if your health information isn't being shared.

Megan: Right, yeah, the risk is you're not getting necessarily the best care.

Elizabeth: Yeah, and then if you're looking at it from a macro level, imagine during the pandemic and your public health decision makers are trying to make the best decisions about how to protect the population against an emerging virus.

They also need really timely, accessible and high-quality health data at an aggregate level to understand: how many hospital beds do we have? How many physicians or nurses do we have? How many people have the illness? How many people are vaccinated So it's also an incredibly important tool to save lives, quite frankly.

Chris: Yeah, and I completely agree with everything Elizabeth said. The stewardship is the idea, right? And even inside government we've gone from a paradigm of, you're the data custodian. And basically, what that means is, it's your job to lock it down and make sure nobody else can touch it or see it or understand it. Because that's the most safe thing, right?

If you share it then there's a chance, and there's lots of ways to mitigate but there is a chance. Whereas if you don't share it, there's no chance…

Megan: There’s no chance.

Chris: … right? So, the incentives in our system need to be shifted towards one where it is about stewardship. It's not about locking it down. It's about making sure that it creates the value that it can for primary care and for the public good, right? Like the national scale.

Elizabeth: Yeah.

Megan: I think if people are listening and worried about privacy, they're probably wondering, I'm guessing, about how it's shared and what type of data. So, if something is being shared, let's say beyond your primary care physician, what kind of information is being shared up, let's say? Like, you said earlier…

Chris: Yep.

Megan: … your name wouldn't necessarily be on there. Are we talking about anonymized data, I guess is my question?

Chris: Yeah, and so at the public health level, absolutely. From the data perspective, yeah you de-identify, you anonymize data, right?

Megan: Right.

Chris: And there's lots of ways to do that. You can use algorithms to extract and just take all the names out. Take all the dates of birth out. Just keep the core data fields that you need which would be for a health region. It might be: “in this city there's 75% of the people have had X vaccination or Y vaccination”. That's the data that they need. So, the idea that this would somehow get down to Chris Allison is it just wouldn't happen.

Elizabeth: Another example is the Canadian Institute of Health Information. So, they are our national stewards of health care data, and they collect de-identified record-level data from Provinces, Territories or from health organizations, and they use it to provide decision makers or researchers with insights about what's happening at a national level about healthcare.

But I will say: we say “aggregate level” because we're looking at it at a population level as opposed to your and my personal health information with our names attached to it. But there's also an emphasis on disaggregated data so that you can actually understand the different sociodemographic issues that are going on and social determinants of health. So, it's important to understand race-based data, or Indigenous information and those kinds of things so that you can understand how are health services being delivered? And where are their gaps? And who's being served or underserved? And making sure that you're making improvements based on that information.

Megan: That's a really good point. So, if someone has questions about how their information is being shared. Questions or concerns. That is a question I'm assuming you can talk to your physician, or, when you're receiving care, that is something you can say: “what is being shared and how?” right?

Elizabeth: Yeah absolutely.

Megan: Cool. Okay so we've touched on a few challenges in terms of a reluctance to share sometimes. Systems and technology talking to each other. Is there anything else that we're working on in terms of challenges and data?

Elizabeth: Yeah, I mean, related to the culture is the people and the processes and the policies behind that, that allows you to…

Megan: Of which there are many.

Elizabeth: There are many, right? And I talked already about there being an incoherence of policies and we're talking about policies that were developed for the analog age. And so that's when we had paper records that sat in a physician's office.

Megan: Yeah.

Elizabeth: And so, we're in this digital age. 95% of physicians use electronic medical record systems. We're working on making sure that those systems can talk to each other through common standards. But we also need to modernize the policies and make sure that there is that coherence across the country.

So one of the things we want CIHI - the Canadian Institute of Health Information - to do is to really play a leadership role in sort of bringing together all the different stewards out there and making sure that they have a common understanding and that there's consistent policies that are really enabling that health data sharing. Part of it too is kind of the roles that we need across the system.

So, I'll give a bit of an analogy that's linked to hockey. So, imagine you've got the NHL, which is the people that are setting the rules for health data. And then you've got your hockey players who are playing inside the bounds of those rules. But you also have that really critical role of a hockey coach that is interpreting the rules and making sure that the hockey players are playing well and strategically and fairly. And in the health data space we're kind of missing the hockey coach. We've got the NHL. The government decision maker that makes the rules. And you've got the data custodians that are holding that data. But we're missing those enablers and the people that are empowered to interpret the rules and make sure that it can be shared effectively.

So that's a gap that we're working to fill and creating a community of data stewards to be able to improve the way health information is shared. And then this is the other critical point, and I'm borrowing this idea from someone else that I know from New Brunswick, he said: “, in addition to the hockey coaches, we also need to work with our spectators. And not every- not all the spectators are fans yet”. And that's very true in the context of Canadians.

Megan: Right.

Elizabeth: And you sort of touched on it. There's a lot of people that are legitimately worried about…

Megan: Yeah.

Elizabeth: … their personal health information and how it's being used and their privacy, and that's totally fair. But we have to recognize it is so important that your health data be shared so that you can get the best care possible and that the right decisions are being made to improve the health system around us.

Megan: That's a great explanation. You're mentioning making people fans and I can tell that you're both in charge of making people fans because you're so enthusiastic. Can you talk about some data wins, some examples at the individual or population level about… you're like: “okay, wow. That data sharing really saved someone's life”, or “we learned something really major from that”? Do you want to start Elizabeth?

Elizabeth: Data wins? I have a lot more data losses.

Megan: Okay sure.

Elizabeth: … that I can…

Megan: You can. Yeah, let's go with that.

Elizabeth: One story that we often talk about, and we're actually quite close with this stakeholder, it's an organization called Greg's Wing. So, Greg was a young man who lived in Alberta and tragically he died. He had testicular cancer and there were many factors that contributed to his death but one of the main issues was that he kind of fell through the cracks of the health care system. And it was because the different care providers involved in his care, they weren't communicating well, and information about him was not flowing between the different sites of care, and he lived in a more rural area.

So, we're talking about going from one part in the rural space to another part for specialized care and there was just a lack of flow of information and a lack of teamwork. And so, his family, as a result of that very tragic event, has used his story to create Greg's Wing and raise awareness about the importance of interoperability and of team-based care and many other issues in terms of improving the health care system.

So that's one story that I think really hits home in terms of how a lack of sharing data can actually lead to everything from misdiagnosis to wrong treatments to repeated tests but also, in this case, to leading to death. So, I think you can look at that from a positive perspective as well. You and I probably each have stories, like everybody's…

Megan: Right.

Elizabeth: … got stories, of feeling frustrated. You're expected to retain all the health information in your head, and you go to different specialists over and over again and you have to tell their story over and over again and it's really frustrating.

Megan: Absolutely.

Elizabeth: And I know as, like I'm a mom, I've got two young kids and the number of times I've had to do that, especially when I'm going between my primary care doctor for my kids and their allergist and the respirologist and none of them are sharing health information. They ask me really specific questions about the dosage of my kid’s puffer and what medications they're on and I don't remember, and I have to call the pharmacy and then they hand me a paper prescription.

Megan: Yeah, and then it becomes your responsibility.

Elizabeth: It does.

Megan: Really you are the data sharer then.

Elizabeth: Yeah. Which I think is part of the direction that we are going in. Is that we're trying to get people to be able to access all of their health records and be in control of their records and mediate who can access their data. So, I'll give you a positive example, because that's what you asked for in the first place. So, a positive example.

New Brunswick. They have recently, with the support of Canada Health Infoway, launched what they call a Patient Mediated Patient Summary and what it actually looks like is… it's on your phone. It's an app and you can download all the information about the medications you're on, the lab results you have, your immunizations. And you can choose, with just a barcode, to share that with other care providers wherever you are.

Megan: Wow!

Elizabeth: So not just in New Brunswick. Where you live. You can travel. You go visit your kid in university and you have a heart problem, and you need to go to the hospital. You can give access to that clinician when you're there. Or you could be traveling across the world and be able to download that and give access. So, that to us is kind of really cool in terms of that…

Megan: Yeah.

Elizabeth: …patient-mediated access and where you have control of who gets to see it.

Megan: Very cool. That's a good story. Chris?

Chris: Yeah, so from the national level, there's actually been a couple of wins. Like COVID Trends. When COVID was starting up and when we were doing testing all over the place, Provinces and Territories were publishing results and it was being aggregated and it really allowed us to understand what was happening across the country, and to make better decisions on that. So that's one piece.

But one of the things when the Omicron and Delta waves came, and there was just… there was too much, right? A lot of places stopped the testing and stopped reporting on it. Which meant all of a sudden it seemed like there was silence. But there was actually more COVID in communities than… 

Megan: Right, right.

Chris: …at any time before. So, this was a huge challenge. One of the things that had been in the works for years but that actually rose up was wastewater analytics.

Megan: Oh, people love to hear about wastewater!

Chris: I know it's poop, right? Everyone loves to talk about poop!

Megan: Tell us more.

Chris: So, this is literal data exhaust. So, basically what this allows you to do is in a privacy protecting way - because you're not reporting on Chris Allison coming in and getting a test, but you're looking at the content of wastewater in a health region or in a city, understand, not exactly what's going on, but it allows you to see trends. You can use that kind of information and the fact that it is privacy-protective…

Megan: I was just going to say: it's built-in anonymity.

Chris: Exactly. Right. It's a really powerful tool and so there's a lot of: how do we look at that in terms of flu? How do we look at it in terms of other things? And that's one example of taking environmental data and using it for public health outcomes.

Megan: Right.

Elizabeth: You can also, just on the theme of success and progress that's being made, I'm really happy to see how much progress is happening with respect to developing a common patient summary. So, when we're back into the healthcare space, just think about what is that really basic information that should follow you wherever you go? So, your allergies, and the medications you're on, and last visits you might have had to the hospital. Those core information.

And so, I talked about New Brunswick launching their patient-mediated access. But there's a lot of other Provinces that are making a lot of headway as well. Galvanizing around this as a starting point. And then they're also working on things like making sure that you can have electronic referrals and electronic consultations. Cuz I'm sure if people listening to this… I'm sure each and every one of you have had bad stories of your referrals being lost…

Megan: Right.

Elizabeth: … or it taking months or you having to follow up over and over again. And how much easier it is if it can be automated and done electronically. So, that's another big space that we're going in.

Megan: Absolutely. Okay. Let's talk about COVID-19. So, I'm getting the impression we were data rich during most of COVID-19. Is that a fair assumption to say?

Chris: I'd say it depends. I think COVID did a lot of… it was a traumatic time…

Megan: Right

Chris: … for people. It was a traumatic time for the country, for jurisdictions, for health care professionals. It was really, really difficult. And in that time people really stood up and really thought about what they needed to do to support the health of people across Canada.

So, I think we saw an unprecedented level of willingness to responsibly share data across the country in response to just a massive public health crisis. So, that I think was fantastic. So, there was willingness again. People, the open data movement, Provinces, Territories, jurisdictions sharing data openly. And then that let the national level… oh okay well, this is being shared here. We understood what was happening.

Megan: And how did that specifically shift? Was it a willingness? Is it a system? All our resources were put to that because it was the most important thing.

Elizabeth: I think one of the things that really pushed everybody to share their data more and to come to the table and work together is: none of us could receive care during the pandemic. We were stuck at home and physicians and healthcare providers were stuck at home. So, the Provinces and Territories had to enable virtual care. They had to figure it out.

And so, they came together because they… it makes no sense for each one of them to be scrambling on their own. So, they all came together with Infoway and CIHI and figured out how to enable virtual care. And when you have virtual care, you de facto need your health information to share…

Megan: Right.

Elizabeth: …electronically as well. And so, I think that was one of the instigators that helped bring people to the table and it also put in spotlight the need to have the pipes and the water flowing between different sites of healthcare. So, it kind of put interoperability into the forefront.

Megan: So, in terms of lessons learned then from COVID-19 and data. Where are we at? What did we learn?

Elizabeth: I think one of the key things that came out of the pandemic is we need interoperability. We need those common technical standards for the systems to connect and data content standards for the water to flow. The content of the data to go through those pipes. That we needed to shift culture toward a culture of state data stewardship and modernize our policies to the digital age.

To build public trust and literacy. Make sure that people understand how to use the electronic tools that are accessible and that they understand the health data that is contained in those. But also understand why it's important to share data and what safeguards are in place. Those were the lessons that really came out of the pandemic, and we've taken all those lessons and applied them fully to a lot of the work that's going on now.

Megan: Cool.

Chris: Yeah, and I don't think you can understate the amount of energy and the fact that every Province, Territory, the federal government, the vendors, the healthcare providers, everyone is pushing in the same direction. And that's the lesson from COVID I'd say.

Elizabeth: Yeah.

Chris: Right, like no- the ecosystem is so complex. No one can do this on their own.

Megan: Right.

Chris: So, you really do need this this coalition that includes the driving and the legislative support from Health Canada, the Canadian Institute for Health Information, Infoway, Public Health, again, all the vendors, all the jurisdictions really pushing and it's happening. So, this is a bit of a watershed moment I'd say in health, and I think it's enabling the fact that we can do this. It's really hard work but people are people are working it.

Megan: I feel like I could talk to you both forever, but we do have to wrap up. But I want to end on a key takeaway from each of you. So, I think you've probably have a few listeners now who you've piqued their interest. Let's give someone a key takeaway about data and health. What can they think about? What could they learn more about?

Elizabeth: I think for me; in Canada we're making a lot of progress and there's a lot of momentum underway. But I think, as Canadians, I think we all just assume that our health information is being shared in an effective way, and it really is not. So, I put it out there to Canadians listening to demand more, expect better of your health care system.

Because we shouldn't, in 2024, be relying on an inefficient paper-based system with our prescriptions being faxed or given to us on a piece of paper. It's time for us to catch up with the others. so, I think I'd leave that key takeaway. Inform yourself about what's going on with health information and push and expect more out of your health care system.

Megan: That's great. And I will just add that canada.ca is a good place to start if you're looking for information about data.

Elizabeth: 100%, yeah.

Megan: Chris?

Chris: So, I also would say demand better. This is: we can do so much better. We have the technical ability to do it. We have the standards to really take big steps forward. We just really need to expect, and all of us need to demand that from our governments. From our political leaders. From our care providers. I think that's really core.

The second bit is: data is understandable. Have a look. Invest some time in building data literacy. Understand what your data is. Understanding… I'm not saying read a license agreement that's 15 pages, but there's a lot of good sources on what an international patient standard looks like and just imagine: okay so if this is shared, what is the impact? And what are the benefits? So really look at that from your perspective. Because the benefits will far outweigh the potential risks in, like, 99.9% of the cases.

So, build your own data literacy. There's so many open resources out there that can help you to do that. And in doing so you're going to understand just the potential. It's going to help you to demand that better and it's going to help you to empower folks across the system to really do better to support health of people in Canada.

Megan: Great message. Be curious.

Chris: Yep.

Megan: Thank you for this great conversation.

Elizabeth: Thanks for having us.

Chris: Thank you.

Elizabeth: Yeah.

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Learn more

• Public health data - Canada.ca
• Working with partners to modernize public health data - Canada.ca
• Working together to improve health care in Canada: Overview - Canada.ca
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