Ontario is trying a wild experiment: Opening access to its residents’ health data

Toronto, home of the MaRS Discovery District.
Toronto, home of the MaRS Discovery District.
Image: Reuters/ Hyungwon Kang
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Correction: An earlier version of this article misstated Project Spark would allow researchers access to Ontario’s health data. Instead, that’s being done by a separate initiative between MaRS and Ontario’s Institute for Clinical Evaluative Sciences. The article has been updated to shown that the initiative to share health data with researchers is separate from Project Spark.

The world’s most powerful technology companies have a vision for the future of healthcare. You’ll still go to your doctor’s office, sit in a waiting room, and explain your problem to someone in a white coat. But instead of relying solely on their own experience and knowledge, your doctor will consult an algorithm that’s been trained on the symptoms, diagnoses, and outcomes of millions of other patients. Instead of a radiologist reading your x-ray, a computer will be able to detect minute differences and instantly identify a tumor or lesion. Or at least that’s the goal.

AI systems like these, currently under development by companies including Google and IBM, can’t read textbooks and journals, attend lectures, and do rounds—they need millions of real life examples to understand all the different variations between one patient and another. In general, AI is only as good as the data it’s trained on, but medical data is exceedingly private—most developed countries have strict health data protection laws, such as HIPAA in the United States.

This has led companies interested in applying AI to healthcare to find different ways to scoop up as much data as possible. Google partnered with Stanford and Chicago university hospitals to collected 46 billion data points on patient visits. Verily, also owned by Google’s parent company Alphabet, is recruiting 10,000 people for its own long-term health studies. IBM has spent the last few years buying up health companies for their data, accumulating records on more than 300 million people.

These approaches, which favor companies with considerable resources, are pretty much the only way to get large troves of health data in the US because the American health system is so disparate. Healthcare providers keep personal files on each of their patients, and can only transmit them to other accredited healthcare workers at the patient’s request. There’s no single place where all health data exists. It’s more secure, but less efficient for analysis and research.

Ontario, Canada, might have a solution, thanks to its single-payer healthcare system. All of Ontario’s health data exists in a few enormous caches under government control. (After all, the government needs to keep track of all the bills its paying.) Similar structures exist elsewhere in Canada, such as Quebec, but Toronto, which has become a major hub for AI research, wants to lead the charge in providing this data to businesses.

Until now, the only people allowed to study this data were government organizations or researchers who partnered with the government to study disease. But Ontario has now entrusted the MaRS Discovery District—a cross between a tech incubator and WeWork—to build a platform for approved companies and researchers to access this data, dubbed Project Spark. The project, initiated by MaRS and Canada’s University Health Network, began exploring how to share this data after both organizations expressed interest to the government about giving broader health data access to researchers and companies looking to build healthcare-related tools.

Project Spark’s goal is to create an API, or a way for developers to request information from the government’s data cache. This could be used to create an app for doctors to access the full medical history of a new patient. Ontarians could access their health records at any time through similar software, and catalog health issues as they occur.

There are currently 100 companies lined up to get access to data, comprised of health records from Ontario’s 14 million residents. (MaRS won’t say who the companies are). Access to quality data for millions of patients is essentially the promise of free money to an enterprising technology company. Right now the project is focused on software for patients and medical professionals.

“Data is coming in, it is not necessarily always going out and being re-shared,” says Joe Greenwood, who’s leading the Spark project for MaRS. “This is trying to capitalize on the fact that you have this rich, consistent pool of data, but putting in the appropriate governance model.”

With this data, there’s a record for every time an Ontarian has come in contact with a healthcare provider for a routine checkup, appointment with a specialist, or had a medical scan.

In the project’s first stage, which has yet to start and doesn’t have a timeline for doing so, that isn’t as much of an issue: Only doctors, patients, nurses, and specialists will see anything sensitive. When it comes to research and people outside the hospital or doctor’s office, MaRS is still working on how sensitive data will be handled.

Ontario’s health records are a gold mine for anyone looking to study the health of a population. There’s a reason why Google has delegated its top minds to researching health-related AI, and is willing to cough up more than $100 million for a 10,000 person medical study. The worldwide healthcare market is $6.5 trillion dollars, according to the World Economic Forum, and woefully inept at creating software.

That’s why MaRS is also working with researchers, like the ones trying to build AI to assist doctors,  with Ontario’s Institute for Clinical Evaluative Sciences to request a different level of access that provides anonymized data on Ontarians who meet certain criteria.  If you wanted to study every Ontarian who had Alzheimer’s disease over the last 40 years, that data would only be authorization and a few lines of code away.

For Ontarians, the upside of this data sharing could be increased convenience. Though health data currently exists in large databases, Ontarians still have to request their medical records to be sent from doctor to doctor, like in the US. Through this separate project, there would be an opportunity to build software that adheres to health data privacy laws while allowing doctors to instantly get a full download of their patient’s medical history.

Currently, anyone looking to access Ontario’s patient data needs to partner with ICES. Liisa Jaakkimainen, a family doctor that has worked at ICES for 20 years, says that one danger of this data being available to a large number of people is the lack of control over how its analyzed and used.

“What worries doctors is that their data is being used for marketing research. I think that would really bother doctors, being used for a for-profit kind of industry, that would be upsetting and not tolerable.” says Liisa. “They’re giving it with the idea that it can be used to improve healthcare, and where’s the line between improving healthcare and having a profit in a company? That’s a bit fuzzy sometimes.”