There are currently 100 companies lined up to get access to data, comprised of health records from Ontarioβs 14 million residents. (MaRS wonβt say who the companies are).
All of Ontarioβs 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.
Currently, anyone looking to access Ontarioβs patient data needs to partner with the Institute for Clinical Evaluative Sciences. 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.
βWhat 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.β says Liisa.
Concerns over privacy and data security are mounting following the release of new details about Project Spark, an initiative that will provide businesses access to sensitive health data. Any failure to fully anonymize and secure personal information could lead to βdire consequencesβ and we currently do not have any details on how these companies would protect Project Spark data from being stolen and sold by third parties.
It appears that there is no way for Ontarians to opt out of Project Spark and prevent their medical records from being shared.