Efficient sharing of data saves lives

Texte d’opinion publié en primeur sur notre site.

Many Quebecers will recall Economy Minister Pierre Fitzgibbon’s tactless declaration last summer that he was considering selling Quebecers’ personal medical RAMQ data to some pharmaceutical companies to entice them to “come and play in our flower beds.” While his communications team probably rapped his knuckles, the pandemic shows that the minister was basically on the right track.

Indeed, this is exactly the path that Israel followed at the very start of the crisis, and the European Data Protection Board (EDPB) has also just followed suit by establishing a regulatory framework for the sharing of de-identified data. It would be in the best interests of Quebecers to draw inspiration from these international examples without delay.

More data, more innovation

Asking forestry companies to operate without allowing them controlled access to the forest would obviously be silly. Yet requiring pharmaceutical companies to save us from future pandemics and other diseases without allowing them to access de-identified health data amounts to the same. For scientists, whether in pharmaceuticals or economics, data is the raw material required to stimulate innovation, and many are ready to pay a pretty penny to have access to it.

The example of Israel is certainly the most illuminating on the topic. Israeli Prime Minister Benjamin Netanyahu reached an agreement allowing Pfizer access to the data of vaccinated Israelis in exchange for vaccinating all of its citizens aged 16 and over who wanted to get vaccinated. The idea was that with this data goldmine, Pfizer will be able to evaluate, post-pandemic, the effectiveness of its vaccine, and so improve its strategy for future vaccination efforts. The result? Over 60% of Israelis are vaccinated and contributing to research and development in an industry that is essential to the health of the global population.

The idea of transmitting our data to pharmaceutical companies may seem risky, but we need to understand the nature of the information sent to them. Just like Israel and many European countries, there is no way Quebec will share confidential data allowing for individuals to be identified. What is at issue is anonymous metadata to be used for the advancement of science, to the great benefit of everyone—no social insurance numbers, credit card numbers, or full addresses; just general, de-identified health data.

Leveraging RAMQ

Whether the issue is transparency, access to information, or data sharing, Quebec is far from being a model. Yet we are sitting on a readily accessible goldmine. We should use the RAMQ’s exhaustive data—remember that these would be anonymized, which is to say that they would not allow for the identification of individuals—to encourage different pharmaceutical companies to set up shop in Quebec, or to sign agreements like Israel’s.

We need pharmaceutical innovation, and we will still need it in the future, whether we like it or not. The benefits are great, from the eradication of polio in Africa thanks to vaccination, to the influenza vaccine protecting thousands of seniors here in Quebec each year.

Too often, we remain fixated on an idea that seems problematic, but once properly explained and spelled out, just makes sense.

We currently spend substantial sums of money on obesity prevention, fitness promotion, and the training of future doctors. Pharmaceutical innovation is another important part of the health care puzzle, and it deserves our wholehearted engagement. In the name of science, and the health of Quebecers who depend on it, let’s follow the international example and establish a regulatory framework allowing us to benefit from the safe sharing of de-identified RAMQ data with those same pharmaceutical companies that have the potential to save us from the next global health crisis.

Miguel Ouellette est directeur des opérations et économiste à l’IEDM. Il signe ce texte à titre personnel.