Opinion: The opportunity of accelerated data sharing is particularly notable in genomics: By linking our genomic DNA databases and health care data we can anticipate individual risk to diseases.
There have been a lot of headlines of late warning about Canada’s “data deficit,” the country’s inability to maximize its data resources. What we really need to be calling this crisis, however, is our national “data-sharing deficit.”
The Canadian health care system and its researchers have no actual shortage or deficit of data. In fact, Canada — and that means all Canadians — has one of the richest repositories of health data in the world and it expands every day at a historic rate.
The actual problem is we don’t have the resources to link that data and share it to maximize its value. Call it our “data-sharing deficit.”
Canada’s data-sharing deficit is a result of legacy thinking. We have our data scattered across provinces and agencies, where red tape and gaps in digital infrastructure make it impossible to share, leverage or integrate across the nation. Fear of privacy breaches creates daunting firewalls that researchers have difficulty surmounting. It can take years to connect data sets, even though they could technologically be linked almost instantly.
This lack of sharing is rooted in Canadian legislation, which generally defines health care providers as the “custodians” of patient health data, tasked with protecting patients’ health records. As a result, an individual’s data ends up in different servers within various health organizations.
Health data ends up even more siloed because privacy regulations are different in each province. Our governments, fearing a data breach, default to data protectionism instead of the accelerated data sharing we need.
As we emerge from the deadliest pandemic since the Spanish flu, with an estimated 18 million lives now lost — nearly 40,000 in Canada — it’s clear we need to act. In fact, the pandemic shows the tremendous benefit of embracing this approach and sharing data in real time. We know how to do it.
Health agencies across Canada, and around the world, faced the COVID 19 pandemic with an unprecedented openness to data sharing and were able to analyze the trajectory of the coronavirus and its rapidly evolving variants with speed and precision. Data sharing on a global and local scale enabled the creation and testing of new vaccines that saved millions of lives and likely protected us against a global depression.
Within a matter of days of the COVID-19 outbreak in Canada, health providers started using telehealth platforms, as public health agencies started using data to make daily decisions about lockdowns, school closures, mask mandates and vaccines. Notably, this data sharing occurred without any serious breach of privacy.
At Genome B.C., we believe this pandemic success story shows we can create positive “data-sharing” culture across Canada, a shift in thinking that will give our health care researchers new tools to battle other diseases, including a future pandemic. Genome B.C. is now also focusing on creating that “data-sharing” culture Canada has lacked.
We need to advocate for and assist with the development of the systems and protocols that protect data privacy for Canadians and link our tremendous data wealth in an anonymized and de-identified manner that protects privacy while allowing us to advance research and improve care.
The opportunity of accelerated data sharing is particularly notable in genomics, where Canada is a world leader. By linking our genomic DNA databases and health care data we can anticipate individual risk to diseases, identify and develop bespoke drugs and treatments that will save lives.
But the benefits of a nation side culture of “data sharing” go much further than health care. It can give Canada’s researchers the edge in virtually every industry, to build the technologies and products that will benefit our future.
Our vast trove of health care data — not to mention the other public data we have — are a national resource our agencies and governments have a duty to use for the benefit of Canadians.
It’s time for British Columbia and Canada to become world leaders in data sharing. After this pandemic, we now know we can do it.
This article was originally published in the Vancouver Sun on June 2, 2022.