Canadian governments have invested heavily to improve the use of transform health and wellness data, but most often without a well-defined national vision. A result is an inconsistent approach, undermining good health outcomes, driving up costs, and deepening inequalities.
We could learn something from the experience of Canadian banks. Gathered in 1984, they had agreed to adopt a common digital platform, called Interac, which allowed customers of competing companies to carry out transactions from any ATM. Since then, our personal information has followed us everywhere, along with the ability to access our money – no matter what bank or branch we do business with or where we are.
It’s been almost 40 years since this innovation was implemented, but when it comes to accessing their medical records to consult them and gather the information they contain, most Canadians encounter difficulties. How to explain that the health system has failed where the banking sector has succeeded?
The link between health data and population well-being cannot be overstated, as demonstrated by the latest report from an expert advisory committee to the Public Health Agency of Canada. Indeed, the health sector relies on this information to guide almost all the decisions that are made there, whether it is a question of choosing an antibiotic to treat a simple urinary tract infection or of developing in times of pandemic national policies that will affect millions of people.
Insufficient or inaccurate health data can seriously undermine the delivery of public health care and services and compromise the health of the population.
Our data, or personal health information, is used to guide the care we receive. Without access to our health records and other private data about us, a healthcare provider will struggle to provide us with relevant and safe care.
Population data, which brings together elements of information from a variety of sources, is used to plan public health services and to guide their activities, for example, vaccination programs or research work on cancer treatment.
The problem is that in Canada the organization and stewardship of health data are lacking.
In 1992, the Supreme Court ruled that patients have control over their medical information, but their record as a medium belongs to the doctor. Nearly 30 years later, patients still have very little control over this information, as it is retained, according to the powers provided by law, by the care providers, who are considered its “custodians”.
Thus, the psychological healthcare providers consulted by a patient are designated for the most part as the custodians of his medical information and their primary responsibility is to protect this information. The corollary of this approach is that health data is distributed among several providers, and often in separate structures.
In addition, laws governing the custody of personal health information vary from province to province. The result is a jumble of fragmented and inefficient data silos that are managed by medical clinics, hospitals, research institutes, and health authorities in thirteen provinces and territories, and subject to incompatible regulations that often impede their proper use.
One could argue that in Canada, the law dooms excellence in health data to failure.
The health sector has invested for years in digital technologies, since it was thought, wrongly, that this avenue would solve all the problems. It was not realized that the real obstacle to effective data management was not simply a matter of technology, but politics and governance.
In this digital age, any data management framework that is built based on paper custody will be doomed to failure. To fulfill their promises, health data must be person-centered.
This refocusing of data design would harmonize workflows, policies, and technologies between different service providers and provinces. The former would retain their ability to access to provide care, while a new role – that of steward – would be created to administer population data in the general interest while ensuring the protection of privacy. and personal information.
This will only happen if we reinvent our approach to data policies and data governance to fit the digital age.
Some will say that our federation is paralyzed by the unalterable separation of powers in health matters. The simple answer to this objection is that there is nothing in the Constitution that prohibits the provinces and territories from agreeing on the definition of common standards for health data. If competitive banks have managed to cooperate for the good of all, it is reasonable to believe that all levels of government will also be able to reach an agreement.
Data has the advantage of knowledge and knowledge leads to wisdom. Our mismanagement of information deprives us of both and poses a risk to public safety. We can do better than that.