The Decibel - Canada’s fragmented medical records system

Episode Date: April 15, 2025

The way medical records are handled in Canada is a patchwork of disconnected systems – creating massive headaches for patients and doctors. Patients struggle to access their own data, and practitioners have to waste time compensating for inefficiencies. But, governments, companies and healthcare professionals are searching for ways to make all these systems talk to each other.Chris Hannay is a staff reporter at the Globe who covers the business of healthcare. He’ll explain how Canada’s medical record system ended up like this and what Canada could gain from adopting an interconnected system.Questions? Comments? Ideas? Email us at [e-mail]

So Chris, if you had to describe Canada's medical record system in three words, what words would those be? Good, bad, and ugly. Chris Hanneck covers the business of health care for the globe. And he looked into why Canadians have such a hard time accessing their own medical files. For most patients, it can be quite frustrating. There are some patients who really like their medical record system,

and for others, trying to get their records is hopeless. But it's a bigger problem than just that. Our record systems don't talk to each other, which is difficult for healthcare providers, and it could affect the quality of care you receive. That's the bad news. The good news is that governments, companies, and healthcare professionals are trying to fix our broken system. Chris is here to explain.

I'm Maynika Ramen-Wilms, and this is The Decibel from The Globe and Mail. Chris, thanks so much for joining us. Thanks for having me. To start here, can we just look at how things work now in Canada? How are medical records actually handled in this country? It is all over the map. So with health care delivery in Canada,

you can think of your doctor's offices and hospitals. And all across the country, handling medical records is pretty much up to each individual hospital or doctor's office about how they do it. So some are very good and there's some that have very advanced systems where it can be easy for doctors and for patients to access records. And for some places they're still on paper, still with those folders behind the receptionist desk and using faxes to send information back and forth. Wow.

I mean, that seems kind of unbelievable, honestly, right, in 2025, that we're still faxing information. And from what you're saying, it doesn't sound particularly efficient or effective, a system, to have all of these different kind of siloed operations. So from a patient perspective here, what are the consequences of the system being this way? Well, for patients, it can be very hard to access the records. So in the story I wrote recently, I talked about a patient who had a very difficult experience with her late husband,

where he had been diagnosed with cancer and the cancer moved much more quickly than they expected. And unfortunately, he passed away after a few months. And she felt like she didn't have all the information and she ended up going on this two year journey to try to get information including through the access to information system. Like actually filing access to information requests with the government for her late husband's information. That's kind of unbelievable that you don't have access

to your own information in that way. You have to file an access to information request just to get that. Yeah, I mean, just for one example, this woman lived in P.E.I. But, you know, in Ontario, if you go to some Ontario government websites, they will suggest that you file access to information requests if you want your medical records. To be clear, some places will give them if you ask some doctors offices,

some hospitals will give you your records if you ask. But for those who can't get them, they have to go to extreme lengths to get their own information. So can we go back to the story you started telling me about this woman? Her husband unfortunately died of cancer. She filed this access to information request. What happened then? So after she sifted through hundreds of pages, and she had a long journey through, you know,

back and forth with the government about what records were going to be released and all that. And to be clear, she had her late husband permission to get the records. It's actually fairly easy to do that part if you're a caregiver for somebody who's sick to get permission to access records. Anyway, in the files she discovered that there was one test for a particular genetic mutation called a crass gene and he had tested positive for that, which meant it was a very aggressive kind of cancer, but that had never been communicated to her husband while he was alive. Okay, so she didn't actually know that he had tested positive for that.

Would that have made a difference to them and their care? Well, it could have meant that some of his treatment might have been different. It would have, and it could have meant that they would have had a better idea of what treatment would have been like, would have been able to plan better for his final few months. Okay. I know Chris, you also spoke to an ER doctor in Toronto who also had a story about how access to records was difficult. Yeah, so it's not just difficult for patients to access their records. In a lot of cases, it can be difficult for doctors. So I talked to one doctor who works in an emergency room who talked about how a patient

had come in who had had an ultrasound done at a private clinic. There's lots of private imaging clinics for ultrasounds and other kinds of scans. And the patient had abdominal pain and the doctor asked if he could see the scan and couldn't. And so they had to order a new scan to see what the problem was. That meant that not only did they have to order a new scan, they had to tie up these resources and get another technician to do the scan.

It also means it takes a lot more time, which for the doctor is kind of an inefficient use of his time. And for the patient, you're an inefficient use of his time. And for the patient, you're going through extra anxiety, extra stress. If you imagine you're in that circumstance where you've had a concerning scan at a private clinic, you go to an ER and then you have to wait even longer, and then you have to get a scan again. You can imagine how horrible that would be to be in that position.

Okay. So it sounds like healthcare providers can also struggle with the access part of it, but are there other consequences as well for doctors? Yeah, so there can be very serious cases like medical errors one of the things going on in Canada right now in a lot of provinces is pharmacists and other healthcare professionals are Having an increased scope of practice which means that they can do more things provide more treatments in the case of Pharmacists, maybe they can have prescriptions for common ailments.

But one of the difficulties there is a pharmacist may not have access to a patient's full medical record. They may not know all the other drugs that the patient is on, they may not know allergies, they may not know the medical history that could influence whether or not they prescribe something, and that could cause errors. That's something that pharmacists are aware of too. Obviously that's a whole other debate about

increasing scope of practice for pharmacists, but one solution to that is just making sure that there's a better record system so that they can actually see the patient's records when the patient wants them to see their records. And then there's just a lot of inefficiency in the system. One of the number one complaints for family doctors is the amount of time that they have to spend just with data

input, essentially. If you actually look at one of the screens that a family doctor has to input information on, it's kind of hard to describe. There's so many windows. There's so many fields. It is so complicated looking and they have to waste hours a week just inputting all that information.

So the consequences for this fragmented system we have for poor electronic medical record systems goes from like the relatively mundane to very serious. Yeah. And my story, one of the people I spoke to was a family doctor in Scarborough in East Toronto called Rosemary Lowe. And she talked about how, like, this is almost impossible to believe, really. Her office is fairly advanced. She tries to really keep on the leading edge of electronic medical record systems.

And she had a patient who had gone to a hospital, and that hospital had also tried to be fairly advanced with its electronic medical record systems. But those two systems couldn't talk to each other and so the only way that they could share information was that the hospital would send a fax to the doctor's office. The fax didn't have patient information. It had information about like what URL the doctor could use to download the information as long as like with like a passcode so the doctor could use to download the information as long as like with like a passcode. So the doctor would then get the facts, go to her computer, go to that website,

input the information to download the file. She couldn't just import the file into her system. She then had to like create a new file in her system, transfer data in between. Like it just takes way too much time for what should be a simple process. Like imagine how quickly it takes an email to go from you to a friend.

For people I talk to, they don't believe it should take as much time as it does to transfer this information. I guess the big question, Chris, is how did Canada end up with this system, something that's so inefficient and fragmented? Well, it kind of gets to just the way that our health system is run. So we have, as people always like to say, we don't have like one health system in Canada.

We have 13. So every province and territory has its own. But really it's even more than that. The federal government also provides health care and you know, you'd have different hospital networks and then within each province and territory, a lot of these decisions are left to the individual doctors, offices, and hospitals about what they're going to do. Our healthcare system, for the most part, is publicly funded and privately delivered.

That means that each one of those doctors' offices is its independent business. They have to do everything. The doctor isn't just seeing patients. They have to hire staff. They have to make sure the bathrooms are stocked with toilet paper, they have to do everything in there. Part of that is maintaining the IT systems in the office. And you can imagine, doctors are very smart people, but they may not know or have the

time to know about every drug, every condition someone could have, and then also every kind of IT system their computer should have. Yeah. Well, since you mentioned the IT systems, because this seems like a big part of it, how easy is it for a doctor's office or hospital to upgrade those systems?

It can be very challenging. For hospitals, they will do big requests for proposals. It'll be massive projects like multi-million, many, many multiple million dollar projects. It'll take many years to change all their systems so they can be quite an undertaking for them. Particularly, again, they're having to do it on their own for the most part. So as you mentioned, there's, you know, fragmented systems across the country because most of our health care is delivered provincially, but the

federal government also has a role as well. And isn't the role of government, Chris, to set certain standards? Like, I guess I'm wondering here why we haven't done that. So for a long time, this issue with medical records is the kind of thing that's not really gets a lot of voters excited. And so politicians mostly haven't been spending a lot of time with it. You know, people have tended to be more worried about just having access to a family doctor. But it's become more and more apparent to political leaders how much the issue of medical records and health data and record management has been a real drag on the system.

So there have been, in recent years, there have finally been more movement to get this issue addressed. The federal government every few years signs these big health transfer agreements with provinces. That's where they decide just how many billions of dollars go to each province and territory to help them manage their health care system. And in 2023, what the federal government did there was try to tie more strings, essentially, to that money.

One of the things they did here was to try to say to the provinces, okay, we're going to give you more money, but this time we want better reporting standards so we really understand how the system is actually doing. So we can actually understand where the gaps are, what issues patients are having. And one of those things was around data interoperability. That's essentially like integrated systems that can talk to each other essentially? Yeah, exactly. And then they followed that up in 2024

with a bill that would set national standards on making sure that these different healthcare systems can talk to each other. Unfortunately, that bill didn't get a chance to come up for a debate or a vote before parliament was prorogued at the beginning of this year, so it's died. But the issue may come up again after the election once we know who wins.

We'll be back after this message. Okay, so Chris, Canada's medical record system is highly fragmented, but electronic records do exist here. So do we have a sense of how common electronic records are, say, versus paper records? Yeah, so that is part of the system that's really advanced. So as much as there are still paper records in the system, there's been huge strides in trying

to move to electronic records. So there's a survey that came out in 2024 that found that at that point up to 95% of physicians used electronic records which was way up from like a decade before. Yeah so actually it sounds like most offices have transitioned over to electronic records at this point but it's still difficult to share information. Yeah and they still have paper records in their office. I mean also inputting all that information that you had in paper records into these electronic

systems is also its own time waster. So there will be some time to transition fully into this electronic system. I guess I'm trying to understand then what the crux of the issue is here, because if there is such widespread adoption of electronic records, why can't these systems talk to each other? Yeah, I want to take it to step back and like, if I can offer a metaphor here about, you know, how frankly ridiculous it is to a lot of people in the system that these different health care record

systems can't talk to each other like imagine if you know I had a phone with let's say Bell you had a cell phone that was on the Rogers Network and we were not allowed to text to each other yeah that wouldn't fly yeah exactly or you were with one bank and I was with another bank and we wanted to send an e-transfer and we weren't allowed to and we were in different banks. People wouldn't stand for that. And yet that's the system that we have with medical records. Part of the issue here is that there honestly hasn't been a lot of incentive for the software

providers, the companies behind the software to get their system to work with each other. So in 2022, the Competition Bureau put out a report pointing this out, saying that the software providers had actually financial incentives not to have their systems talk to each other, because it helped them create a moat around their own business that might push people, doctors' offices, towards one system or another,

or might keep them from transferring. I've heard stories, and it was mentioned in the Competition Bureau report, that say you're a doctor and you had used one software system, if you wanted to switch to another one, you might be charged thousands of dollars to do that. Wow. Okay, so this is an interesting point, because there's actually an incentive then for these different electronic records companies to actually not talk to each other. Just so we have a sense, how many of these providers are there in Canada, Chris? than for these different electronic records companies to actually not talk to each other.

Just so we have a sense, how many of these providers are there in Canada, Chris? So there's been a lot of what's called rolling up, which is when a big company buys up a whole bunch of little companies. And so the field has become quite concentrated. So for doctor's offices, there's about three providers that are all Canadian.

There's TELUS Health. There's QHR, which is owned by La Blah. And there is Well Health, which is a publicly traded company that also owns a number of doctors' offices. So those are pretty big companies. You may have heard of TELUS and La Blah. And then for hospitals, they use different software. That's all American.

Epic is probably the biggest one. It's using a lot of American hospitals as well. I wonder if there's an additional reason here, because we are dealing with medical records. Are there privacy concerns that are also a factor in why we wouldn't be able to share information here? Yeah. So there does have to be very stringent guidelines on handling health information, of course. It is like, say, financial information where you want to be very careful about who has

access to it, who can share it. So there's laws governing health privacy. But depending on who you talk to in the industry, there are some people, some companies who say that one of the reasons that innovation has been slow is because of how stringent Canada's privacy guidelines are and how much they need to respect that, which is fair. But there's other people in the system who also say, wow, we feel like privacy has been raised as a reason to go slow, but there actually isn't a lot of need to.

I mean, if you look at financial information with the bank I bank at, I can do a lot of services on my mobile app. Banks have had to really compete for customers, and so they've tried to do a lot of services on my mobile app. Banks have had to really compete for customers and so they've tried to you know put a lot of attention to those kind of innovations. So it sounds like Canada is not doing great here but I wonder are there other countries that we can look to as an example that are doing better when it comes to these medical records? Yeah so it's definitely a journey that a lot of countries have been on. I mean Australia introduced their central

electronic health record system that all hospitals could share and that doctors' offices could access as well. They introduced that more than a decade ago. Imagine how much further Canada could be along if we were following that timeline. And if you want to talk about how fragmented Canada's situation is, you can look to something like the EU, which is not just a collection of provinces, but also a number of different countries. And the EU is farther along than we are.

Different countries have different standards within the EU, but they've adopted a shared standard that actually just went into effect. It's kind of rolling out in stages, but the ultimate goal is, within a few years, to have all the EU countries have the same standards and have the data be able to talk to each other. Okay, Chris, can we spend just the last few minutes here talking about what we could do

to improve the situation then? Are there technical innovations that could help us here in Canada, like an app? I don't know, AI? Could that help us get better here? Yeah, absolutely. There are different companies that are working on this. So Point Click Care in Ontario is an innovative electronic health record system that's trying to make patient data

more accessible. There's another company called Pocket Health. Their model is giving patients access to their imaging so that rather than try to get different systems to talk to each other directly, they're like we just want to make sure that the patient gets their information and then the patient can share it with whoever needs to see it. And for some of these services they do cost extra money which can also bring in other

questions about patients having to pay to access services in our public health care system that should be free. So just lastly here Chris, beyond better access and a better experience for patients, what else could we gain here? Like if governments finally solve this problem about sharing data. Yeah so there's a lot of people in the system that say that there's actually even more benefits that we could get beyond just sharing records if we could get all these systems to work and talk to each other. So there's a lot of research that could happen, if we could get all these systems to work and talk to each other.

So there's a lot of research that could happen, public health research. Governments or public health authorities could have a better idea of population health, how people are doing in certain areas, if there could be better access to this data. And to be clear, this kind of research wouldn't be like the government looking directly

into your health records. But these systems can have ways where there's anonymized data, where they can just see trends across millions of people. There's also AI training. So there's been huge advances in recent years on AI programs that are able to look at different kinds of scans, like MRIs or scans of lungs, and be able to diagnose problems or work with radiologists to help identify problems earlier.

But to train those AI programs, they need to be able to have access to a lot of existing scans and information. And then there's like, AI is being used a lot in drug discovery. So AI is working with scientists to help find new drugs. And to be able to do that and to be able to predict whether or not those drugs work, they do need again some anonymized data from real patients.

I was even talking to someone recently about how one of the difficulties when they're developing drugs for rare diseases, it can be very difficult to find people with those diseases. They were saying one of the new ways that they're identifying new patients is with electronic health records. There could be AI looking for particular symptoms and then reach out to those doctors offices and say you know if you have patients that have are exhibiting these kind of things we could offer to you know involve them in drug trials. Yeah so there sounds like there's lots of different options here that could be explored.

Yeah there's all sorts of innovation in the system that could be unleashed if our IT systems were more advanced. Chris, thank you so much for taking the time to be here today. Thanks for having me. That's it for today. I'm Maynika Ramon-Wilms. Our associate producer is Azra Souter. Our intern is Olivia Grandy. Our producers are Madeline White, Michal Stein, and Ali Graham. David Crosby edits the show.

Adrian Chung is our senior producer, and Matt Frainer is our managing editor. Thanks so much for listening, and I'll talk to you tomorrow.