The Importance of Quality Health Data — Janet Davidson and David O’Toole

Alex Maheux

Hi. Welcome to the CHIP, the Canadian Health Information Podcast. I’m your host, Alex Maheux.

In this show from the Canadian Institute for Health Information, we’ll give you an in- depth look at Canada’s health systems and talk to patients and experts you can trust. Join me as I go beyond the data to find out more about the work being done to keep us all healthy.

Better data, better decisions, healthier Canadians. It’s CIHI’s slogan and the reason for our existence over the past 25 years. And now, it’s something people in Canada understand and appreciate more than ever. The federal government’s Speech from the Throne recently highlighted this same thing, calling for improving our health data collection to improve health outcomes for people in Canada.

In today’s special episode, we sit down with CIHI’s President and CEO, David O’Toole; and Janet Davidson, Administrator of the Nova Scotia Health Authority and former Board Chair of CIHI, to discuss the importance of health data, how we can improve the health of people in Canada, and how now is the time to take action.

David, it’s nice to see you.

David O’Toole

Thanks very much, Alex. I’m delighted to be here with you and Janet to have this discussion.

Alex Maheux

Mm-hmm. Janet, welcome to the CHIP. How are you doing today?

Janet Davidson

I’m doing pretty well. I’m really quite pleased to be here today to be able to chat.

Alex Maheux

Wonderful. We’re happy to have you.

Well, I’ll cut to the chase. Health data has recently been on centre stage like never before. In fact, it’s so important and top-of-mind for people in Canada that the federal government’s Speech from the Throne called it out directly, and I’ll quote it for you: “A need for improving data collection across health systems to inform future decisions and get the best possible results.”

David, I’ll put you on the spot 1st. Wearing your CIHI hat as CEO, and personally, what was your reaction to this?

David O’Toole

Oh, I have to say that I wasn’t expecting it and I was absolutely delighted to see it included as a priority in the federal Throne Speech. I mean, for folks who don’t work every day in government, as a former public servant, the amount of intrigue and confidentiality around what’s included in a Throne Speech, sometimes even inserting 2 or 3 words about something has whole ministries on edge. And so, for something to be referenced as specifically as this was, in the context of what really are other broad-broached statements of intention and aspiration in the Throne Speech, was delightful and surprising.

Alex Maheux

Janet, you’ve dedicated your entire career to improving our health systems, whether it was starting on the front lines in your career as a consultant, assistant planner, a deputy minister, or hospital CO; frankly, reading these out it makes me wonder if you’ll have more time in the day than the rest of us. Thinking of all these roles across the many provinces and how data has helped you enable to make decisions, how important was that as a signal for you that as a nation we’re going to work to improve it?

Janet Davidson

Well, I mean, like David, I was pleasantly surprised to see that in the Throne Speech. So I’m very energized by that because I think it’s critically important. But being around as long as I have, I just have to say that I think the proof is going to be in the action and actually moving forward on this. So I’m positive, but I’ll wait to see the results.

Alex Maheux

Well, let’s get to the action. David, this might be a bit of an obvious question, but we know that good data helps make better decisions. Can you kind of help explain that to us? How does good data improve health systems?
And maybe if I may, as a 2nd question to that, how have we seen this play out throughout the pandemic?

David O’Toole

Well, I think you’ve seen a couple of different things. You’ve seen where data has been able to help make decisions about priority setting, allocation of resources, identification of where health workers with specific skill sets needed to be as health regions and provinces and territories made decisions about who was going to get what care when.

But you’ve also seen some of the costs of not having fully integrated data. For example, not having effective linkages between public health system and hospital system data has really, really been a hurdle to timely decision-making about triaging, about allocation of PPE, and about where patients’ flow ought to take place for ICU occupation and things like that.

So I think you’ve seen both where it has demonstrated its value, but you’ve also seen about are the absences so costly to the effective running of health systems.

Alex Maheux

Well, Janet, for you, I’ve mentioned the many roles you’ve taken on, but these are for very complicated complex organizations, and you’ve also been working throughout the pandemic. What were some of the emerging health priorities that you saw where we didn’t have the data we needed to support these decisions? Were there times you felt you were kind of flying blind?

Janet Davidson

Oh absolutely. And I think David did a good job of highlighting the areas where we need it. But, for example, I mean, in COVID, a lot of COVID was in the community. And while we have a lot of good data about institutional care. and I would say hospital institutional care. And when I say good, it’s not always timely, but at least we have substantive information. But in the case of COVID, where so much of the disease is in the community or, for example, in long-term care, we didn’t have a lot of information to be able to make the sort of important timely decisions that you need to make.

So I think any way in which we can improve that is going to help us because you can’t be spending the amount of money that we spend in health care and not really be confident that you’re spending it on the right things.

Alex Maheux
And, unfortunately, we know that there’s bound to be another health crisis. I hate talking about that when we’re still very much entrenched in COVID. But what change would both of you hope to see before the next major public event, given that we’ve learned where the gaps are in the system.

David O’Toole

You go ahead, Janet, because I think that’s an excellent question.

Janet Davidson

Well, I mean, I think what we would want is comprehensive information about the population, not just individuals who happen to be in the more traditional health system, and that we’re able to follow the information about that individual, whether he or she is in the community, is in public health, is in an institution, whether it’s an acute care hospital or a long-term care facility or a doctor’s office. I think having that information, not just having it, but having it in real time so that you’re able to make the sort of timely decisions that you need to make. And I think we’ve learned enough in COVID to be able to know where we need to move forward next.

I often talk about there are some positive advantages of COVID, but I think probably one of the biggest positives of COVID is it’s pointed out the need for comprehensive data, health information about our population to allow us to make the right decisions in a timely way.

David O’Toole

Just to elaborate on Janet’s point. If you think about what individual health institutions are managing now, at this point in the evolution of this pandemic it would be an absolute tragedy if the country didn’t treat as priority fixing those potholes and vacancies that exist in the health data infrastructure across the country in anticipation of another public health crisis for sure, but also in the interests of just delivering high-quality care on a day-to-day basis.

So, right now, there’s imperfect information about the allocation of accredited and non-credentialized health human resources right across the country for long-term care, for nurse practitioners, just about every health profession for which there’s a college, for which is regulated, particularly unregulated personal service workers. And if we’re going to go through a health human resource crisis in this country, as we’re starting to experience now, and institutions and provinces and territories are going to be forced to look at different ways of delivering care and different service models, you actually need to have an accurate sense of which professions are where so that you can start to develop those models so that the care that’s delivered to individuals is of the highest quality when they need it.

So you’ve got a health human resource challenge, you’ve got an opioid challenge that’s probably, if it wasn’t for the pandemic, would be on the front page of the papers with respect to its crisis levels, and you’ve got an accumulated backlog of all the interventions that didn’t take place as a result of the pandemic that has to be worked through the individual systems.

The need for data to coordinate those collated activities over the next 2 or 3 years is going to be fundamental to how care gets delivered to Canadians.

Alex Maheux

That’s a good point. You kind of reminded me. I heard someone recently say that right now, as it stands, the only person who has a comprehensive idea of their journey through the health system is the patient themselves. And, David, you touched on the need for more continuity and more comprehensive data for health human resources. Janet, you touched on a similar issue when it comes to continuity of care for the patient themselves. What barriers are in the way right now in order to get this done?

Janet Davidson

In some cases, as I mentioned earlier, I mean, we have what I would consider to be fairly high quality, it’s not always timely, but information about acute care hospitals. Doctors’ visitors to some extent. But the rest of the system, I think we’re working on it, but it’s still got a lot of work to do, particularly in the public health side of things. So that’s missing. It’s not just that we don’t have the data. Assuming we even get the data, then we have to have it in a timely way. We can’t be turning around and saying that we’re making decisions on data that’s 6 months old or a year or 2 years. It’s simply — we know through COVID — that’s not the way the world works. So I think that’s critically important.

I think also, my own view, is that there are artificial barriers to confidentiality and sharing. I mean, I think it’s important that we always say we want to make sure that the data are protected and an individual is not exposed to whatever might happen as a result of a data breach. I always say in whose best interest is it that we won’t share data? And I think that question needs to be asked every single time. Somebody says we can’t share it, I want to know why because I don’t think — my own view is the public wouldn’t necessarily agree with sometimes the technical interpretation that we have of some of that.

David O’Toole
I agree entirely. I actually think the public and the people who are receiving care assume that we’re sharing and linking data. And gathering data for its own sake is useless. Data is only as good as the ability to link it to other data to create knowledge and information, and to make it available to the research community, to create new forms of intervention and new — develop new methodologies.

So we’ve got obstacles in our ability to link care, link data. So, for example, primary care data remains a kind of confounding challenge across this country. So the information, Alex, that your GP holds is held by your GP. It’s not linked to anything else. We need to be able to link long-term care information with hospital information, with home-care information, and have at the centre of it potentially, in some ideal world, primary care data because that’s the individual who’s quarterbacking your care largely, and it should be available to you as well.

Alex Maheux

Well, we’re talking about solutions. You’ve both mentioned it. You both highlighted it very clearly. We need to invest in infrastructure which can be challenging, especially after the 2 years of stress and shock to the system and it takes time to see results. It may not be the shiny new thing, but how would building the right data infrastructure make a difference on the lives of everyday Canadians?

David O’Toole

I think we need to be thinking about this in the same way that we think about our highway system. It’s a infrastructure that needs to be invested in and maintained indefinitely in the interests of the health of Canadians right across the country.

Janet Davidson

I agree with you. Yeah, I think that’s important, David. And if we look back over the history of this country, and I would say, I mean, CIHI’s been instrumental in this, is we couldn’t have done this 25 years ago. We could not have done it. But the degree of collaboration and cooperation among the various jurisdictions on the importance of data, particularly in the health sphere, I think is something that’s advanced tremendously.

Alex Maheux

Something I’ve heard before in interviews is obviously the data and the numbers is what we’re focused on improving, but ultimately what we’re talking about is the impact it’s having on human lives. That’s the importance of this.

David O’Toole

In addition to the collaboration, Alex, between governments and officials, people are talking about this around their dinner tables. Right? The country’s become sort of amateur epidemiologists. They’re talking about COVID numbers, infection rates, vaccination rates, you know, spike proteins. These are things that 2 or 3 years ago didn’t crop up naturally in the course of a conversation that people are now thinking about or being confronted around the media every day.
So you have this kind of intersection of public officials’ interest and the public interest and awareness so that there’s this kind of organic growth in data literacy and awareness. And we really need as a country to take advantage of that.

Janet Davidson

I agree. I agree.

Alex Maheux

Well, going off of that, because there’s so much public interest around it and now, you know, as you said, David, people now know what R is and different other epidemiological trends and terms, how do we explain the importance of data and health data to people in Canada? Or do you think that that’s obvious now after the last 2 years we’ve had?

Janet Davidson

Well, I mean, my view is I think the public understands much better the importance of data. I would harken back though to David’s earlier comment that I would think the public would be surprised that we don’t have this data.

I mean, you look as an individual your encounters with the health system. So you go to the doctor’s office, you have to give all kinds of information. You go to a clinic, you have to provide all kinds of information. Every time you go to a hospital or a long-term care facility, or even in virtual care, any of this, you’re providing all kinds of information. I would say they would expect that there would be some of this, but I think the only way — well, one of the ways that we can help, while there’s a lot more literacy, there’s also… The downside is that people then start interpreting in a way which may not be appropriate. But the more data, accurate, timely data that you have out there, the better position you are in to do the right thing at the right time.

David O’Toole

To complement that, I think data for its own sake, as we said earlier, is irrelevant. We have to talk in terms of outcomes and what it means to individuals’ lives and the care they receive. So I’ll give you an example.

So I can say in the abstract that we don’t have enough appropriate or accurate data for long-term care facilities in the country. But what that means in real terms is personal service workers were working at 3 and 4 different institutions in order to make a living in different jurisdictions. During the early days of the pandemic, they were infected and didn’t know it because they were asymptomatic and vaccination rates didn’t exist at that point. And they were moving between institutions and spreading the virus inadvertently, causing the death and suffering of thousands of frail, elderly people in this country. And that’s a direct result of us not being able to track and understand the implications, through data, of the movement of those people between institutions and within institutions. That’s just one small example.

And the absence of data is going to be a real confounding element as we try to work through the backlog in surgeries. We need to understand what the implications are for individuals of not having received a cancer test over the last 2 years and what’s that going to do to deaths due to cancer and hospitalizations due to cancer? It’s going to put more pressure on the hospital systems.

I mean, I don’t mean to sound gloomy, but these are the real-world problems that hospitals and people like Janet and the Health Authority are trying to grapple with and solve. And if they don’t have data, they’re doing it blind.

Alex Maheux

Well, to end it; maybe take this back to more a hopeful note. David will be thrilled with what I’m about to quote. CIHI’s slogan is: Better data. Better decisions. Healthier Canadians. If we do what we’ve been talking about this whole episode well and we do it now, what do you think the future looks like on the health data front? And are you both optimistic?

Janet Davidson

Oh, I certainly am. If we’re actually able to achieve this, and taking the Throne Speech on face value, then I think the opportunities are limitless. I mean, I look at Canada and particularly, I mean, McMaster University is the home for evidence-based medicine. Evidence-based medicine: that’s what it’s all about. And I think having the right information that’s timely and allows you to make the right decisions is absolutely wonderful. I’d love it.

David O’Toole

I am optimistic, Alex. And I think we owe it to the people, the health professionals and the patients who have borne the implications and the effects of this pandemic more than anybody else. People in hospitals and in long-term care institutions who are working to serve the patients who are there sometimes have had to resort to heroic measures in the absence of data just to do the right thing.

And so I’m optimistic that there’s enough agreement around the country that we need to make progress in this to improve the experience of the people who are delivering care and of the patients and the outcomes that the individuals are receiving and experiencing as well.

Alex Maheux

Well, I’ll join you both in being optimistic for the future of health data and for the lives of Canadians.

Janet, David, thank you so much for your insight, your knowledge, and thanks for being here for this special episode with us.

Janet Davidson

Well, thank you very much. It’s been quite — I always get energized in these types of discussions.

David O’Toole

Thanks a lot, Alex. And, Janet, it’s always great to see you. It’s a great way to start the day.

Alex Maheux

Thanks for listening. Check in next time when we bring you more valuable health care topics and perspectives.

If you want to learn more about CIHI, visit our website, cihi.ca. That’s c-i-h-i-dot-c-a. And if you like what you heard, subscribe where you find you podcasts and give us a follow on social media. Our executive producer is Jonathan Kuehlein and special thanks goes to Angela Baker and Randi Ptolemy.

I’m Alex Maheux. Talk to you next time.