What is the value of personal health data?

How much is health network data worth? In Canada, it’s a $200 billion question. The real answer risks increasing the appetite of governments, like that of Quebec, which see in these snippets of digital information an enormous economic and logistical potential.

The figure of 200 billion is not insignificant. This is at a minimum what could be worth, according to Statistics Canada, all the data produced each year in Canada. To be exact, the federal agency estimates, based on figures dating back to 2018, that the value of all economic activity surrounding data creation in Canada at that time was between $157 billion and $218 billion. dollars.

The real value of this data is probably higher, notes Benoit Dostie, professor in the Department of Applied Economics at HEC Montreal. « This calculation is based on the cost of producing the data, » he told the To have to. In economics, the cost of production does not include all the value since a product is rarely sold below its cost of production. »

Mr. Dostie is also Academic Director of the Quebec Interuniversity Center for Social Statistics. As such, he will present, as part of the International Symposium on Digital Health Data, which is taking place at the Grande Bibliothèque this Thursday and Friday in Montreal, the results of a survey he recently conducted on this thorny question. : What is the economic value of personal data?

« In reality, it is very difficult to establish the precise value of digital data », says the specialist, who adds that it can be calculated in at least four ways: by estimating its production cost, such as did Statistics Canada; by calculating its market value, which can be done from the financial statements of companies that trade them massively, like certain American technological giants; by adding up the income generated by their sale; or by extrapolating on the value of the applications and services that can be created from this data.

A very theoretical value

“Some calculations are more theoretical than others,” concedes the professor. And yet, it is sometimes these more abstract projections of business potential that make researchers, private companies and governments dream. That of François Legault is one of those dreamers. The Minister of Economy and Innovation, Pierre Fitzgibbon, before adding the Energy portfolio to his duties, already saw, in the data accumulated almost everywhere in the government apparatus, a way for Quebec to both to generate new income and to stimulate the creation of new technologies.

For example, according to him, making health sector data accessible would attract major pharmaceutical companies to Quebec and thus revive this once very important industry in the province. “The scientific future of medicine lies in understanding our genomes and our data, so we definitely need that,” he said already at the end of 2020.

The ultimate goal should be to improve the health of the general population

Since then, the boots of the government seem to have followed the chops of the minister. The Régie de l’assurance maladie du Québec (RAMQ) gave access to its databases to the Institut de la statistique du Québec (ISQ). And the tax data that Revenu Québec has on Québec taxpayers will soon take the same direction, as will that of other public bodies.

These agreements offer the possibility for university researchers to dig into the functioning of the Quebec public system. In health, they have already been able to do this for some time using Ontario data. Ontario already entrusts Statistics Canada with the management of its own health network data.

The Quebec data on which the researchers will therefore be able to work may initially provide an enlightening portrait of the functioning of the health system, believes Benoit Dostie.

As to whether they will attract multinational corporations to Quebec or whether they will generate the spin-off of new Quebec health technologies, there is a big step to be taken that the professor does not take. “The cases where data like this has been used successfully are more in improving system performance and patient experience,” he says. “The ultimate goal should be to improve the health of the general population” rather than income generation.

Matter of trust

According to Statistics Canada, the value of the Canadian data market has more than doubled since 2005. No doubt the digital shift will make data even more valuable in the coming years, which will make more and more private sector players salivate.

However, there is a major risk associated with this enthusiasm: public confidence. This confidence in the data market is also the theme of the conference in which Benoit Dostie and other researchers are participating this Thursday. In addition to their value, the place of technologies such as artificial intelligence in the processing of public data and the degree of ethics surrounding their use are also on the agenda.

Because the challenge of health data is no longer to know if they will be used to develop new technologies, but rather to determine when they will, explains Lyse Langlois, director general of the International Observatory on the societal impacts of AI and digital (OBVIA), which oversees the event.

“Health data has long been a matter of the relationship between caregiver and patient,” she says. The proliferation of platforms and players means that more and more private companies are interfering in this relationship. It seems important to identify the prospects and regain the trust of citizens. » And that is priceless.

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