Scientific research is an essential component of the care and services offered to Quebec society. It should not be considered as an accessory activity: it saves lives! World-class research must be carried out here by our researchers. It is a question of scientific sovereignty. We cannot and should not be entirely dependent on others to meet the challenges of our society and respond to emergencies, as was the case during the COVID-19 pandemic.
The key to success lies in a responsible health information mobilization system that strikes a real balance between protection and efficient access, and that takes into account the secure ecosystem in which research activities take place. It is a new “social pact” offered to Quebecers regarding the use of their personal information for research purposes.
Thus, it is essential to strengthen data governance in the health network, and to provide an environment in which personal information for research purposes circulates in a modern, secure manner, and beyond silos. administrative.
However, given the growing difficulties experienced by our scientists, following the update of the Act respecting access to documents held by public bodies and the protection of personal information (Act 25 in 2021) and a mandate given to the Institut de la statistique du Québec aimed at simplifying the access process for researchers to data held by government departments and agencies, we are concerned that the intention of the legislator was not fully respected when it was implemented. work.
We are the place in North America where personal information is best protected. But protecting cannot be reduced to the sole restriction of access to personal information; it also means doing research on the problems that afflict our fellow citizens. The social value of research must be at the heart of privacy risk analysis. The cost of not carrying out research activities in good time or of dragging them out is too seldom measured.
Quebec invests millions in public money in its health establishments to carry out research activities. He wants to be a leader in several fields, including artificial intelligence (AI) and cancer research. In this specific case, the only possible treatment option for many patients is to associate their personal information with an innovative research project. How to design a learning health system whose objective is an optimal connection between supply, demand and a guarantee of quality of care, without a truly efficient mode of access to data?
Consistency and predictability
Unfortunately, too often, public financial and human resources devoted to research are used to fill out administrative forms. Researchers should however devote the majority of their time to research and not to seeking access to data! Without access to quality and timely data, our researchers have to use data from Ontario, England or elsewhere.
And what about the lack of leadership in international collaborations, our researchers apologizing that “our own data is more difficult to access than the rest of the partner countries”. Research results provide answers with very real effects in our lives, especially if the data used is in the image of our society and not that of our neighbors. Let us think of the rare diseases that affect many of our fellow citizens.
The emerging legislative environment for health information in Quebec has the potential to pave the way for the revitalization of research activity, within a secure environment. But on two conditions: on the one hand, we must ensure that the authorities concerned give full effect to the legislative intention, namely to ensure real responsible mobility of data, and, on the other hand, that the consistency and predictability of personal information access processes be ensured by simplifying them and adding the necessary human and technological resources.
Mobilization and efficiency
We are proposing to simplify the processes so that researchers who work in health establishments can in particular be able, in full respect of the rules of consent and access, to use the data for research purposes, regardless of or the organization responsible for access.
Finally, it should be added that the chief scientist and the Fonds de recherche du Québec are mandated by the Government of Quebec to support research and promote it. We oversee these research activities through the statement of various policies, including those relating to responsible conduct in research and scientific integrity and to free access to research results (open science).
We are the trusted body for research in Quebec. It would therefore be most appropriate to give us a clear role in ensuring the responsible and efficient mobilization of data for research purposes. We propose the creation of a consultation table to agree on standardized, interoperable tools compatible with research activity and a public registry to monitor the fluidity of access to health information and the evolution of state of health of the “social pact”.
We have a tremendous opportunity to join the countries that both hold personal health information on their population and know how to mobilize it, in the service and with the support of this same population. While we are acquiring such a robust and world-class governance framework, let’s not put a brake on it, but on the contrary, let’s take advantage of it to offer research the means to flourish and to give full effect for the legislator. In this regard, we will know how to be partners and key players.