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

Dave Gershorn at Quartz: “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….

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. Or researchers, like the ones trying to build AI to assist doctors, could 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.

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). …(More)”