Canada has some of the richest population-based health data in the world, but leveraging it to benefit patients, innovative companies and the economy will require sharing data among provinces and with entrepreneurs, experts said at Research Money’s 25^th annual conference in Ottawa.

The country also needs to protect its health data that’s now stored on U.S.-based firms’ cloud servers and get that data under Canadian control, they said during a panel session at the “Acting on Health: Reimagining Canada’s Promise” conference.

Some of the panelists also suggested that sharing health data should be mandatory across Canada and that provinces and hospitals should have to report regularly on what health care technologies they’re procuring.

Canada has the most educated population in the world and Canadian entrepreneurs have created billion-dollar companies in the U.S., said panel moderator Mobeen Lalani (photo at right), manager, technology and venture development, and co-director of UTEST at Toronto Innovation Acceleration Partners.

“So the problem isn't Canadians. The problem is Canada. And we've been hearing from the 1990s how we were great, and we aren't anymore, and we need to be again, and we can be again,” he said.

“We have an opportunity with health data. We are ideally positioned, because of the great work of organizations like CIHI (Canadian Institute for Health Information) and others, we have population-based data sets that are unique . . . in an era where this is going to be the natural resource for a trillion dollars,” Lalani said.

However, other countries could potentially own that data “because it's residing on their cloud servers, countries that are actively hostile with us right now,” he said.

Anderson Chuck (photo at right), president and CEO of the Canadian Institute for Health Information (CIHI), said Canada has to stop “sprinkling” its funding and other resources thinly across the country.

“Other countries don't sprinkle. They identify and select the select winners to build certain infrastructure, certain enablement, and they go with it,” he said. “That's what we have to do.”

Other countries are strategically positioning their assets in a way that enables bringing data at scale for innovation that boosts the economy, “that then pays for things like roads, bridges, schools, health systems,” Chuck said.

“Canadians need to understand that this [data] is the solution to your [health care] access problems, to your sustainability problems,” he said.

“But [it’s] also the solution, from a societal point of view, of how economy can be strengthened to pay for our public goods, like health services, while in the meantime also creating an environment for Canadian innovation to flourish so that we're less reliant on foreign actors as it relates to our critical drugs, our critical supplies, and those kinds of things.”

Christy Holtby (photo at right), vice-president, philanthropy at the Alberta Cancer Foundation, said Canada has lacked champions who are actively soliciting investments for data and telling the story about why data access is so important.

People are worried that researchers and companies with access to their health data are going to see flaws and weaknesses in their health records, so are afraid of disclosing them, she said. “What we've not explained is how that data is used [and protected], what that opportunity is.”

“What is the value proposition across sectors so that people can see themselves and what they want to build, and position it as a strategic advantage for Canada?” Holtby said.

If Canada wants to leverage its health data, government and hospital procurement systems for health technologies must be changed, said physician Kumanan Wilson (photo at left), CEO and chief scientific officer at the Ottawa-based Bruyère Health Research Institute.

“This can't work the way it is now – how hard it is for Canadian entrepreneurs. The system is rigged against small Canadian companies. The U.S. companies, the global multinationals, have a huge advantage,” he said.

“We can't keep playing, we've heard since 1990, the same game over and over again with the same outcomes. We're going to have to change the rules of the game if this is going to work,” Wilson said.

“And we have no choice. We have an apex predator to the south of us who's taking our best [innovation and talent] and using it against us. We are going to have to make this country much more hospitable and supportive of those Canadian entrepreneurs who are the best of us so that they can help us.”

Canadians’ health data is at risk on servers owned by foreign entities

When it comes to having sovereign Canada data, Canadian data that resides on clouds servers owned by U.S. companies – even servers in Canada – is still subject to the U.S CLOUD Act, so “they [the U.S.] could potentially have all our data,” Wilson said.

The law allows U.S. law enforcement agencies to access electronic data stored by U.S.-based technology companies, even if the data is stored in other countries.

Wilson said Canada needs mandatory encryption to block Canadian health data from foreign entities, similar to what Switzerland has for data in its banking sector.

“We're not going to immediately replace the U.S. cloud giants with Canadian cloud servers. That's a five- to 10-year, if we're lucky, project . . . But the goal should be to move off of those servers at some point,” he said.

For example, a report in June by the U.K.’s Commons Science, Innovation and Technology Committee pointed out that U.S. tech giant Palantir should not have such a significant role in the U.K. National Health Service and wider U.K. public sector, and represents a “clear mismatch with UK values.”

Palantir provides software and data analytic services to the U.S. Immigration and Customs Enforcement, and has been a long-time contractor for the Department of Homeland Security and currently supplies multiple platforms tailored to immigration enforcement.

The increasing presence of the controversial firm in U.K. public services amounted to an “unacceptable point of weakness” for the government, according to the U.K.’s committee report.

“We’re at a similar risk. Most of hour health care is run by U.S. companies,” Wilson noted.

In Ontario, Wisconsin-based health care software company Epic acts as a foundational digital backbone for the province’s health care system. Dozens of major hospital networks and health care organizations (including The Ottawa Hospital, Unity Health Toronto, University Health Network) have independently adopted Epic’s Electronic Medical Record system to digitize and unify patient data.

Alberta also uses Epic’s software and Newfoundland and Labrador is in the process of a province-wide implementation.

Chuck said his personal opinion as a Canadian taxpayer – rather than representing CIHI – is that any of the AI developed from Canadian health data should not be for Epic to resell to other jurisdictions.

“That was paid by public money. That data should be owned by Canadians for the public good of Canadians and used by Canadians for our benefit and not be resold again when we've already paid for it once,” he said.

When it comes to Canadian companies using the data for commercial purposes, currently, there is no direct way for entrepreneurs in Canada to legally get access to health care data. Access has to be obtained through an academic researcher.

“We have to get away from that. There has to be some teeth in a way in which there is band-aids for information to have to be shared so that we can actually link patient journey for the patient as they move,” Chuck said.

Wilson said Canada needs to be “using our patients' data to build algorithms that work for Canadians, ideally done by Canadian companies. That should be the priority.”

Canadian entrepreneurs and companies want a level playing field to compete in Canada, he said. If someone puts out a 100-page request for proposals, for example, “there’s no way a small, medium-sized startup can compete,” he said.

There are in essence only 14 customers – the provinces and territories – in Canada’s public health system, he noted.

“That's why they [Canadian entrepreneurs] all go to the U.S. You get so many further opportunities for procurement,” Wilson said. “Everybody's talking about supporting Canadian, buying Canadian, but the number of Canadian entrepreneurs going to the U.S. has only increased. So we really just have to level the playing field.”

Federal government is investing in the health data space

The federal government committed $100 million to launch the Health Sector Data Space, as part of Canada’s broader AI and innovation strategy, AI for All.

As outlined in the strategy, the space will “link secure, private and standardized datasets to strengthen clinical trials, health services research and performance measurements.”

The Canada Institute for Health Information (CIHI) was named as part of the government’s AI strategy.

CIHI’s role will be to take Canada’s health information, which remains fragmented across organizations and jurisdictions, and connect and integrate it to use the data to its full potential.

Last month, the federal government announced a $100-million investment in the VITAL health data platform. The platform, founded by St. Michael’s Hospital physicians Dr. Amol Verma and Dr. Fahad Razak, includes St. Michael’s Hospital, Unity Health Toronto and Ontario’s GEMINI research team.

VITAL is building digital infrastructure for health data, using near real-time clinical data, that will connect more than 160 hospitals across Ontario, Alberta and Quebec, serving over 20 million Canadians.

By securely connecting de-identified electronic health data from across different systems, VITAL will create the largest hospital data network in Canada, providing researchers with near real-time access to health data for research and innovation.

VITAL will significantly expand Canada’s capacity to support cutting-edge research that addresses health care’s pressing challenges, and it will support high-impact clinical trials and strengthen Canada’s leadership in health data and AI innovation, Ottawa said.

Through the Canadian Sovereign AI Compute Strategy announced in Budget 2024 and the update provided in the 2024 Fall Economic Statement, the federal government committed up to $30 million over three years for the initial development of VITAL across three provinces: Alberta, Ontario and Quebec.

Building on this momentum, in 2025, VITAL secured an additional $24.5 million from the Canada Foundation for Innovation for a $68-million project to expand participation to rural hospitals, develop clinical trials software and integrate medical imaging data. and will allow Canadians across the country to benefit from these innovations.

Canada needs to start connecting its data assets, said Chuck from CIHI. “You need to link the health leadership with the industrial development leadership to do commercialization.”

CIHI is now trying to figure out the mechanisms to allow permission-based, secure health data access for commercial purposes, he said.

But there needs to be a “buy Canadian principle,” because Canada’s health systems are fiscally constrained and trying to minimize costs, so big established companies with volume can offer better prices for health care technologies, Chuck said.

“If you buy Canadian, that means that we're going to be able to be more resilient as it relates to our own sovereignty and self-determination because it's a Canadian company,” he added.

“These other factors should come into play, and if we really want to be leading and start developing an ecosystem where Canadian companies can flourish, I think we actually have to, as a country, support that explicitly,” he said.

“ I know it's going to be a little bit more expensive, but for these other reasons, we are going to invest, subsidize a Canadian string because that's how other countries do it,” Chuck said.

Wilson said that somehow the Canadian brand has been “tainted” within Canada, with buyers thinking that a made-in-Canada product is somehow inferior to a foreign-made product.

Yet two Canadian inventions, insulin and medications GLP-1, went to create Novo Nordisk in Denmark, Europe’s biggest company, whose annual revenue is over US$47 billion and provides $3 billion a year in government tax revenue “And we don’t get any of that,” Wilson said.

“We’re the only country that does that,” he said. “How did we sabotage ourselves and put ourselves in the situation that we’re in?”

Canada needs to better communicate its success stories in the health care system

Holtby pointed out that there are success stories in Canada’s health care system.

For example, the Alberta Cancer Foundation injects between $40 and $50 million into the cancer care and research ecosystem in Alberta every year, she said. “We have revenues between $55 million and $105 million that are largely driven by the ambition of the system and our academic partners.”

Often philanthropists are funding the research that leads to intellectual property generation, she said. “So the philanthropists have walked the walk, talked the talk with their commitment . . . philanthropists have adopted the riskiest investments that ventures can take.”

Holtby, who said she’s a big believer in public-private philanthropic partnerships, said the Alberta Cancer Foundation, the Alberta government and Siemens Healthineers recently announced a nearly $1-billion public-private philanthropic partnership. “And core to that is actually an AI centre of excellence in oncology, leveraging these assets.”

Also, in building Alberta’s Data Environment for Cancer Inquiries and Decision, an advanced cancer data analytics platform developed by Cancer Care Alberta and Alberta Health Services, industry was invited to co-develop the initiative. “We took an ecosystem approach and presented the opportunity and gave everyone an equal seat at the table,” Holtby said.

With access to rich health data and the right privacy and data-sharing agreements, that approach will mean Alberta will get more research, more clinical trials and more investment into the province to advance big ideas, she said.

Chuck noted that Nova Scotia is proactively looking at how the province’s health data is connected and implementing a consent-based system to provide secured access to the data. The province also makes it mandatory for health care providers to share their data.

Nova Scotia’s approach “has teeth. Look to Nova Scotia and Finland,” he said. Finland has implemented opt-out consent for its data, “but the beauty of the Finland model is that who’s in control is the citizen.”

Wilson said he has done work with Newborn Screening Ontario, which does screening for several rare diseases. That data is now linkable to health services data, enabling analysis that previously wasn’t possible. The project is now partnering with Stanford University and the Gates Foundation to expand the work.

Holtby said Canada’s success stories in the health and life sciences sector “need to need to be told in ways that other Canadians can understand that we have the capacity and the pride . . . it has to happen quickly, though, and I think there is an opportunity right now, with some of the trade negotiation deals that are happening, to act quickly.”

Lalani said Canada’s approach historically to health data has been like the movie Groundhog Day. “There have been so many national data strategies over and over again. And one of the problems is the provinces, and there are some provinces that may not be as super-keen on Canada as they have been in the past [and] are reluctant to transfer data to the federal government.”

However, CIHI already has information-sharing agreements with the provinces as a government-adjacent entity, and CIHI has much more trust, he said.

Canada has spent a half a billion or a billion dollars trying to set up a national, centralized  immunization registry, “and we don't really have quality data,” Lalani said. Vaccination records are managed individually by each province and territory.

CIHI now has all the authority and the ability to leverage that data by linking it to other data, so CIHI should be Canada’s immunization registry, he said.

Canada has to take risks to invest in data, digital infrastructure and AI

Wilson said the reality is that Canada’s public health care system amounts to a single-purchaser system, with procurement by provinces, territories and hospitals.

“I would love to see report cards coming out for how many [products from] Canadian-controlled private corporations, hospitals and provinces are buying,” he said. “We just need to make it transparent.”

“I sit at the roundtable with hospital VPRs and they all complain about how there's no money. [I tell them], ‘You're the solution. It's $300 to $400 billion in procuring power. You could decide to make a policy change where you buy Canadian and create that tax revenue. That's going to support your hospitals. I think we need to look in the mirror, a lot of us.”

But health care is naturally risk-adverse, starting with the Hippocratic oath, Wilson said.

For Canada, it is “easy to be risk averse when you're probably the wealthiest country in the world from a natural resources perspective per capita. It can dissuade you from taking risks in other areas,” he said.

However, Wilson said, “I think there are more harms done by people not having access to [health care] data than the potential privacy risk.”

Much of the privacy risk can be reduced, he said. “We can never go to zero risk. We have to learn to live with a certain level of risk. If we go to zero risk, we're not going to progress at all. We're going to incur those risks because the U.S. is going to go do it anyway, and we're going to buy their solutions.”

Moreover, the cost of Canada’s public health care system is on an unsustainable trajectory without taking some risks and investing in digital infrastructure, data science and AI, Wilson said.

The solution is to derive more value out of the $400 billion per year that Canada now spends on its public health system, he said. said. “How many Canadian companies could we create that pay 20 percent of tax revenue, you know, make investments and research?”

Said Chuck: “This [leveraging of health data ] is about patients, health systems, but it is also about economy and how economies actually fund health systems moving forward. For us to have a sustainable public health system into the future, we have to do this by necessity.”

“It's really around getting crystal clear on the value of this in the short term. What is the value proposition outside of the health sector for responsible data use?” Holtby said.

Lalani noted that in Canada, the health and life sciences sector is competing for government attention with the steel, critical minerals and other sectors.

“Part of the sort of socialization is Canadians understanding that health data is one of Canada's greatest natural resources. It is actually as valuable as steel, as critical minerals, as these other industries,” he said.

The value of all the gold ever mined in history is US$16 trillion, he said. The future health AI life sciences market is around a trillion dollars per year. So in 16 years, the life sciences sector will be as valuable as all the gold ever mined.

“To me, that's a pretty big industry in and of itself,” Lalani said. “Canada has this opportunity for this future health AI industry that could be as valuable as all gold ever mined.”

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