A new platform, in which McGill University is participating, will allow researchers across Canada to more easily share their health data.
The leaders of the Advanced Research Collaboration for Health Integration, Medical Exploration, and Data Synthesis (ARCHIMEDES) project hope that it will smooth out some of the obstacles that they believe are “slowing down” health research in the country.
They cite, among other things, “fragmented” data systems, “cumbersome” approval processes for data transfer, and “limited” mechanisms for secure inter-institutional collaboration.
Consequently, they lament, “valuable data from health research remain siloed, projects are delayed, and discoveries take longer to reach patients and benefit them.”
“One of the current challenges is that, as Canadians, we have very rich, unique and comprehensive health data on a diverse population, but we don’t really have an efficient way to bring all this data together to make the most of it,” said ARCHIMEDES co-chair Professor Jodi Edwards, who is also the scientific director of the University of Ottawa Heart Institute’s Centre for Scientific Data.
The goal of ARCHIMEDES is therefore to meet this challenge, she added, and to set up “a national system capable of integrating all types of health data, bringing them together and enabling the use of high-performance computer analysis tools, such as AI algorithms, all in one single space.”
The ARCHIMEDES platform was designed to offer Canadian health researchers “secure access to various health data” and to enable “responsible sharing of data between institutions,” it was explained in a press release.
A “two-tier secure” access model will allow researchers to determine how their data is shared.
Project leaders hope this will promote “collaboration and respect for ethical rules and will allow compliance with the new data management policies” of the three federal agencies that fund research in the country — the Canadian Institutes of Health Research, the Natural Sciences and Engineering Research Council of Canada, and the Social Sciences and Humanities Research Council.
“There is a lot of silos in the field of medical research,” lamented the other co-chair of ARCHIMEDES, Professor Kelly Cobey, who directs the Metaresearch and Open Science Program at the University of Ottawa Heart Institute. “But to leverage data from each of these communities, you need a centralized space where you can aggregate that data and, in a way, innovate based on existing data, and of course, future data.”
In Canada, as elsewhere in the world, Edwards said, there is no record of health data from federally funded research, “and ARCHIMEDES is here to change that.”
The project is distinguished, among other things, by the fact that it is able to host multimodal data in one place, including behavioral data, images, genomic data and biological samples, she added.
Project leaders admit, however, that its success will require a “culture change”, since researchers can be very “protective” of their data.
“We are seeing a shift towards more open science and greater transparency in research, because we are facing what is called a reproducibility crisis,” said Cobey. “If people want to do advanced analyses like AI, they need to share their data, because it needs to integrate all these different types of data.”
There is also a “sovereignty” aspect, she pointed out, since Canada has long relied on American systems like the National Institutes of Health. But today, researchers “are realizing that to advance science and innovate, we need to be more open, share more of our data, which will then be a real catalyst for innovation,” she believes.
The three federal agencies that fund research in the country are also demanding for the first time to know what happens to the data generated — researchers are not required to share it, but they also cannot hide it from everyone.
Edwards believes that this policy will contribute to the success of ARCHIMEDES and that we will eventually see a “snowball” effect: the more researchers share their data, the more other researchers will be interested in doing the same.
“This will be a nationwide resource,” she concluded. “Many institutions are awaiting our launch so they can contribute to the database. We anticipate widespread use at the national and even international level.”
ARCHIMEDES is a partnership between the University of Ottawa Heart Institute, McGill University, and the University of Ottawa. It is funded by the University of Ottawa’s Brain-Heart Interconnectome Research Program through the Canada First Research Excellence Fund.
–This report by La Presse Canadienne was translated by CityNews
