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Avis Favaro

Hello, and welcome to this special edition of the CHIP.

I’m Avis Favaro with a look behind the scenes at the Canadian Institute for Health Information as I talk to the outgoing CEO, David O’Toole. We’ll learn about what he’s seen data do to help the health of Canadians and what gaps there are in collecting that information.

AV���� has been at work now for 3 decades, monitoring things like ER wait times, how long patients stand by for hip and knee replacements, and health care staffing levels

But there’s much more data to be had, and it will be part of a revolution unfolding as Canadian provinces modernize their medical data systems to make patient records easier to see and to share. And to enact a pan-Canadian data charter to ensure the changes last for generations.

So let’s get to it.

[audience applause]

Avis Favaro

So I’d like to welcome you all to this special edition of the CHIP. It’s a podcast produced by the Canadian Institute for Health Information, also known as AV����. And this show is being recorded live in Vancouver at the e-Health meeting discussing the future of digital health.

It’s May 27, 2024, and I want to thank you all for joining us here. And this is the first show that we’ve ever done in front of a live audience. So thank you.

[audience applause]

Avis Favaro

And our guest is a very happy man who’s been at the helm of AV���� for a while; we’ll talk more about that. And this will be a very public exit interview as he prepares to hand over the reins in July. Please welcome David O’Toole.

[audience applause]

Avis Favaro

So you survived 10 years at AV����.

David O’Toole

Oh, yeah, I wouldn’t call it surviving so much as learning something every day and enjoying myself tremendously.

Avis Favaro

So number 1, it’s the longest position you said you’ve ever held with any 1 job.

David O’Toole

Yeah.

Avis Favaro

And —

David O’Toole

Like —

Avis Favaro

So there must be —

David O’Toole

— a little bit of itinerant, yeah.

Avis Favaro

So what is it that’s kept you at the helm this long?

David O’Toole

Oh, I think my background is in public service, and so I feel this is an extension of that work. And so it’s the immediacy and the relevance of the things we were dealing with on a daily basis. There’s a strong element of having to bring different constituencies and organizations together to try to coalesce around a common set of issues, and that was really challenging.

But also I think, more prosaically, it was helping an organization reach a certain level of maturity. Like realize its potential to some degree from where it was when I joined and what I viewed of areas they needed to strengthen in order to really optimize the value of the investment that was being made in them every year with public money.

AV����’s budget comes out of your tax dollars, and you should know what it does. It should be transparent to you, it should be available to you and it should be making a difference.

Avis Favaro

So for people who don’t know exactly what AV���� does, a lot of Canadians —

David O’Toole

Which is most Canadians.

Avis Favaro

Most Canadians don’t know what AV���� does. Can you simply explain what it does and what it means to them, even though they don’t see it at work?

David O’Toole

Well, we’re one of a very few organizations that are deemed to be prescribed entities. We have the legal authority to gather your personal health information without your consent and to fold it and to use it for improving health care delivery across the country.

So we’re largely… Our most profound holdings are in acute care, but we have long-term care. We have 36 different data sets that were developed at different points in time to slightly different standards. So we have a governance issue ourselves to sort out, which we’re doing now.

But we hold a pretty profound amount of information about the state of health care in the country along different axes and with different domains. And we try to bring it together to give a coherent view of the performance of the different systems in relation to each other, with a view to then learning from each other in order to improve delivery overall.
We spend $300 billion a year in this country on health care. We’re one of the most expensive per capita investments in the OECD, and people should be able to make a reasonable assessment of whether they think they’re getting value for money.

Avis Favaro

And have you seen examples where the data have made a difference? Where you went, “aha, this is why we need to collect this data and this is how it can make things better for people?”

David O’Toole

Yes, I have. Some of you may have heard this before, but early on in my experience at AV���� we published a report on the use of psychotics, antipsychotics, in long-term care facilities for individuals — aged care, like senior citizens — who had no indication of psychosis. And it was a clear, clear indication that they were using — like, an overstressed, workforce-challenged sector, capacity challenged — was using drugs to medicate their patients so that they —

Avis Favaro

Sedate them?

David O’Toole

Chemical shackles to manage the population.

Avis Favaro

Yes.

David O’Toole

And within about 6 to 8 months that changed, because not only did politicians and senior officials become aware of it, the sector itself became aware of it and were kind of appalled.

But also individuals were going to our website and taking a look at the indicators that we had put up there and going, “I’m not putting my mom in there.” So I think that was one of those rare instances where public consumption of the information we had, political awareness and policy sensitivity all coalesced around that. And it really anchored in me early on the significance, importance and relevance for public reporting and transparency on these issues, a lot.

And there’s been other ones as well. I think… We didn’t do it, but the work done in B.C. on Indigenous racism in the health care system was pretty profound. Coming out of COVID, there was the clear differential and variable impacts on different — like the unequal impact, inequitable impact, of COVID along racial lines, class lines or economic means lines. Those are all things that allow people to understand and draw conclusions from literate use of the data.

Avis Favaro

So you brought up COVID, the pandemic. Did that highlight vulnerabilities in the system and black holes of data that you couldn’t get? Or you couldn’t get fast enough?

David O’Toole

Oh, the people in this room know this one a lot better than I do because they lived through it. But I would say there has been a boxful of reports written over the last 30 or 40 years about the inadequacies or the things that needed to be fixed in the health care system with respect to the gathering and use of data.

And I think what COVID did was it just, it’s almost like that stuff was a little invisible and COVID illuminated it from behind and made it glaringly obvious over the course of the pandemic. We needed answers to things like, “where are the ventilators in the ICUs right across the country?” We didn’t have that. And so the information that was required to make day-to-day decisions to help save people’s lives just simply wasn’t available.

And I think senior officials at all levels of government and across the organizations that we work with felt it very profoundly that this was like a crippling inadequacy in the health care system. And hence, a lot of the progress that you’ve seen today I think is anchored in the reality of what happened during the COVID pandemic.

We did fantastic things around vaccines and coming out of it, but we also have paid quite a price with respect to the penalties invoked on those people who were in aged care because we were guessing. Like we were guessing at what to do with respect to protecting people’s lives. So we locked them up, so.

Avis Favaro

Right. And how long did it take you to retool or add in the data that you actually really needed, that the health system needed?

David O’Toole

Well, it wasn’t us. We were — like it was everybody in this room, and people who were working in small and midsize institutions and hospitals who were gathering this information at the request of their provincial governments and regional health authorities, sometimes on a clipboard with a pencil.

Avis Favaro

Wow.

David O’Toole

Like some places have it automated and it was easy to get at the access. A lot of places across the country, that’s exactly what was happening. Somebody got pulled off this job — they’re in a workforce-stressed environment — and they were given a clipboard and said, “can you go do a survey of where the ventilators are right now?”

Avis Favaro

Are there still pockets of data that you can’t get to give you the full picture? Like family medicine? Oh yeah?

David O’Toole

Who else would like to answer that question?

[audience laughter]

Avis Favaro

Ah, that’s —

David O’Toole

So —

Avis Favaro

Clearly there are spots that —

David O’Toole

Well, primary care is like… there’s progress to be made. The standards conversation will move the yardsticks, but primary care remains a big black hole, I would say.

And the other part of it is if we spend $300 billion a year in the country, $100 billion of that is not visible to us because it’s paid for through the insurance companies. And we have to work with the insurance companies to get a more comprehensive picture.

Like whether it’s not-for-profits, whether it’s Blue Cross or GreenShield or Manulife, like we have to work with them around standards, and confidentiality, and privacy so that we come to some sort of accommodation that allows the information that they’re holding to have a better sense of how that money’s being spent.

Avis Favaro

So I’ve heard the success. You’ve talked a little bit about the frustration, unless there are more frustrations that you want to share?

[audience laughter]

Avis Favaro

I think there’s more.

David O’Toole

I don’t want the — like we —

Avis Favaro

Well, things that you’ve wanted to get done over your 10 years?

David O’Toole

No, I think I don’t want… Oh, things I’d like to get done. There’s a long list there. But I don’t want the — I don’t — sometimes we just sort of sit back and criticize or critique the health care systems. Because change takes place so slowly and over such extended periods of time because there’s so many moving parts, we lose sight of the fact that there actually is progress being made.

Avis Favaro

One of the reasons that we’re at this meeting is because it is about e-health and the goal of having a health system that’s digital so that patients and health care providers anywhere in the country can share information when it’s needed and patients can see it, too.

David O’Toole

Yup.

Avis Favaro

And so your agency is part of this.

David O’Toole

Yup.

Avis Favaro

It’s part of your mandate to do this. Why is this meeting and the role of digital health so important in terms of priorities?

David O’Toole

Some of the more mundane things that have been discussed over the last couple of days, like the mind-glazingly boring to most people like data standards and interoperability and the things that —

Avis Favaro

I don’t like that word. I don’t like that word. Can anyone say it really easily? Interoperability? No?

David O’Toole

But —

Avis Favaro

You need a better word.

David O’Toole

That’s exactly the point that I was making earlier, is that those sorts of issues that are so germane and foundational to actually wanting to make the progress that we aspire to are the things that didn’t get paid attention to until the pandemic. And then during the pandemic we were able to make the necessary link between the necessity of standards in order to do what you want to — what you’re aspiring to.

You have to think and do at the same time, and motivate or instigate activity along a number of different domains at once, not just 1 domain. It’s like what I can imagine running a trace of horses would be like, if you’ve got 18 and you need to get them going in the same direction: legislation, technology, standards established among public-sector and private-sector institutions.

And I guess the other thing that I was thinking over the course of the last day, because the Charter has been mentioned a couple of times, the Charter of Principles that came out of the recommendations on the expert advisory group on a health data strategy.

Avis Favaro

And what is that for people who don’t know?

David O’Toole

Well, first of all, I suggest you go back and take a look at the report of the expert advisory group, but there’s the establishment of principles. And the reason that matters is because one of the reasons — one of the contributors to disruption, or why we sort of take two steps forward and one step back are because we get jammed in a political cycle where policies made by one government are reversed or thwarted or changed by a subsequent government.

And the significance of the Charter is it’s a principles-based framework for getting agreement in principle or consensus about what to work on, why it’s a priority, and it’s in some ways if we extended it into significant parts of the private sector and not-for-profit sector, we would start to contribute to the building of that consensus that would allow us to sustain a change in governments because there would be unelected players in the sector, in the stakeholders, who’ve agreed to these things and agreed to work and collaborate together.

And I think it’s a really important aspect of the work that we’re doing that we have to figure out a way to motivate a collaboration that can extend over time and not just over 3 or 4 years.

Avis Favaro

So what is AV����’s role in trying to bring digital health across the country to people?

David O’Toole

Well —

Avis Favaro

You’ve got 800-plus scientists and data folks collecting it and analyzing it. How are you positioned to do this and move it forward?

David O’Toole

I think we have to be willing to work collegially and collaboratively with just about everybody who’s attending this conference to be transparent about what we’re trying to achieve.

I think we do have a role in establishing the data standards that’s been spoken to about 5 or 6 times today, and I don’t want to belabour it, but I do think it’s a — it’s like establishing a common vocabulary for all the players in the system. That’s to me what standards are. And syntax, lexicon and vocabulary, we have a role in that with Infoway, with Health Canada, with all the provinces and territories.

It’s actually quite heartening, if you went to a number of the sessions today, the degree to which there’s an intense investment of time and energy from all of those players on what amounts to the same agenda.

Avis Favaro

But other countries have done this. And they have —

David O’Toole

Yeah.

Avis Favaro

— nationwide digital health systems. Why is it taking Canada so long?

David O’Toole

Everybody in the room’s going to have their own answer to that question. But I think it’s just a confluence of things. There’s…

Avis Favaro

What would you tell the average Canadian who has to wait? Like the taxi driver that I was with who had to get his prescription on a piece of paper and it was wrong? Or you can’t see your files?

David O’Toole

Well, I think there’s… So there’s like 40 years of reports that can answer that question. They have laid them out going back to the Wilk Report before AV���� was created 40, 35 years ago. But the good news is we’ve actually started to address them. So it’s all of the things we’ve been alluding to here, Avis.

It’s chauvinism of provincial mandates, like the feeling that, like — I don’t mean that in a disrespectful fashion because I used to work in the province of Ontario, but the desire of provinces to develop their own solutions to the same set of problems; the tension between the federal and provincial governments over funding and whether there should be terms and conditions attached to that; the nature of the professional relationships within the clinical community in health care as well; how clinicians get paid; the fact that for most of my life, people have equated access to health care with whether they can get to a hospital in 10 minutes or not. Like, so all of those things contribute to a very complex set of dynamics that don’t make change easy or fast.

And so I guess my answer would be we got the health care system Canadians want at this point. And if what they want is changing, or what they’ve been — no, let me put it better. We got the health care system of what Canadians are willing to accept. And if they aren’t willing to accept it anymore, and we can help provide the evidence to help them inform their decisions, then that’s a contribution we can make.

Avis Favaro

Okay. So what is your hope? You are now exiting July 2nd. Did you pick that day specifically?

David O’Toole

No.

Avis Favaro

Canada Day, post–Canada Day? What are you looking for? What would you like to see happen?

David O’Toole

I would like to see, let’s say, 4 or 5 years from now, AV���� looking quite different. I would like to see AV���� bringing in data that’s near real time to like last week, but also having a really good understanding of who needs access to real-time data and who doesn’t. And those constituencies that need more current data getting it at the appropriate intervals. Like if you’re a policy-maker or a program designer, you don’t need data from yesterday. If you’re a clinician, you do.

So getting the intervals right, getting the ingestion and access right. I think, actually, the road map that’s in place now and the path forward is really good. I think I’d like to see progress toward those milestones. I’d like to see those indicators that are tough, but doable, seeing measures of progress against them. And I’d like to see the Charter adopted by a bunch of interested private- and public-sector organizations who would take it on as a kind of an agreement between themselves about what they’re going to do, even if the government of the day doesn’t pay any attention to it, or reduces it as a priority because I do think that’s a way of making considerable progress with the citizenry and with the major public and private players in the open market.

Avis Favaro

Advice to your successor?

[audience laughter]

Avis Favaro

What would it take for him to last 10 years?

David O’Toole

I would say being impatient, respectfully impatient about the obstacles that you’re going to confront. Actively cultivate relationships with partners that you want to sustain for a long time, not just transactional. None of this takes place quickly, and you can’t do it without trust. So I would say get known, get trusted and develop relationships with people that are going to sustain over 5 and 6 and 7, 10 years.

Avis Favaro

But just to end up, but it’s always keeping the patient in mind and keeping the health providers in mind.

David O’Toole

We should be contributing. Like we’re only relevant to the extent that we’re relevant to patients.

It’s like, are we improving care? Improving the quality of care, patient safety, patient access to their own information? And are we sensible to the average Canadian? Like, can they go into the AV���� website and understand very quickly what they need to know and why?

And I think the patient experience and the relationship with the provider is the north star for how we should be orienting models of care design, how we think about providing access to information.

Avis Favaro

All right. Well, listen, thank you very much, David, for your thoughts, your reflection. And thank you all for listening in.
As David O’Toole heads off to new adventures, the new, incoming CEO is Anderson Chuck. He is a health economist, most recently the chief economist at Alberta Health Services, He takes up the role in July.

Meanwhile,  want to learn more about the Canadian Institute for Health Information? Head to the website at cihi.ca, that’s c-i-h-i-dot-ca And if you want to read more about the Pan-Canadian Health Data Charter that David O’Toole referenced, you’ll find that at Canada dot ca.

Thank you for taking the time to listen.

A note, there’s a French AV���� podcast hosted by my colleague, Alya Niang. Please subscribe to the CHIP wherever you get your podcasts. I’m Avis Favaro. Talk to you next time.

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