Center for Advanced Computing (CAC) and Diabetes Action Canada deliver proof of concept in national health data repository.
Almost 2.4 million Canadians live with diabetes, and the complications that can come with this disease can be life threatening. Diabetes Action Canada (DAC) works to transform health outcomes of people living with diabetes and one project that supports this mission is a secure research environment in which researchers can run advanced analysis on health datasets to study how to better treat people with diabetes and prevent complications.
Conrad Pow, Senior Project Manager at DAC, along with partners at the Centre for Advanced Computing, have delivered a proof of concept national diabetes repository. This repository holds de-identified patient-level data to answer questions using a secure environment for storage and analysis.
“We’re Canada’s first Personal Health Information Protection Act (PHIPA)-compliant academic computing site. We continue to provide secure solutions to amazing projects like Diabetes Action Canada.
“We’re trying to answer questions as granular as what is an individual’s chances of lower limb amputation or blindness as a direct result of diabetes,” says Mr. Pow. “Having a completely secure, remotely accessible repository allows researchers anywhere in Canada to request access to our datasets and run computational analysis.”
“Placing privacy first enables amazing projects,” stated Chris MacPhee, Assistant Director (Operations) at the CAC. “We’re Canada’s first Personal Health Information Protection Act (PHIPA)-compliant academic computing site. We continue to provide secure solutions to amazing projects like DAC. Ending diabetes, curing cancer, improving mental health – we’re privileged to be part of dozens of medical projects to increase the quality of life of Canadians through platforms trusted by our partners, researchers, and patients.”
Before the national diabetes repository was operational researchers typically had to request very specific cuts of anonymized data. The data would only be sent with a contractual obligation for a data destruction process. Now, researchers can request access to the repository by submitting a proposal which is assessed by a research governing committee. Once a project is approved and undergone a research ethics review DAC can grant access to project-specific anonymized data sets. These data set can’t be removed from the secure system. It is available in a cloud environment for researchers to run analyses. Any results would undergo a risk of reidentification prior to being disseminated. The patient data is kept secure and a researcher can’t re-use a data set without permission.
“At Centre for Advanced Computing, we were able to leverage technological infrastructure, servers, secure connections, and technical expertise,” said Pow. “In the future, we’d like to add other data sets related to genomics and imaging. CAC has the computing power to do that rather than spending research money on a large infrastructure build. It’s scalable technology for scalable research.”