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Data Privacy Week highlights challenges, opportunities for multi-regional data access

A lock icon in green. Text reads: Data privacy week. January 22-26. Logo for Health Data Research Network Canada is at bottom right.
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In a world increasingly founded on data access, use and sharing, the way our data are safeguarded is critical. Data Privacy Week, which occurs annually in the last week of January, spotlights just how much technology impacts our privacy rights, underscoring the importance of protecting our data. The week-long initiative, now observed around the world, began in 1981 as Data Privacy Day to commemorate the signing of the first legally binding international treaty dealing with privacy and data protection. Now, Data Privacy Week is a chance for organizations to raise awareness about privacy and data protection issues across all sectors that collect, use, disclose or store personal information.

For HDRN Canada, there are a number of key privacy issues that relate to facilitating better access to multi-regional administrative health and health-related data for researchers. According to Dr. Donna Curtis Maillet, Privacy Team Lead for HDRN Canada, one of the biggest obstacles is a lack of understanding about how data are – and could be – governed. “There is a general lack of trust on the part of decision makers that data governance could allow for both data protection and data access for legitimate purposes.” Both are possible, she noted: “That’s why HDRN Canada is helping to raise challenges and opportunities with decision makers who can influence policy interpretation and support the adoption of best practices that will both ensure data privacy and facilitate access for research.”

There is a general lack of trust on the part of decision makers that data governance could allow for both data protection and data access for legitimate purposes. ~ Dr. Donna Curtis Maillet

HDRN Canada’s Privacy Team provides expertise and serves as a resource for its member organizations to help ensure compliance with privacy legislation and regulations, as well as application of international privacy principles and best practices across the network. “The challenge is finding common ground across the regions while navigating legislation and policies,” explained Dr. Curtis Maillet, who is also the Privacy Officer for HDRN Canada member New Brunswick Institute for Research, Data & Training. In addition to federal legislation, each province or territory has its own set of legislation that might be applied with respect to data privacy. There are also regional policies to ensure legislative compliance regarding access, use and disclosure of personal information and personal health information for secondary use in research.

The Privacy Team supports HDRN Canada’s goals of harmonizing the data access process across multiple regions, reducing data access inefficiencies, and facilitating access to new sources of data. Composed of privacy professionals from across the country, the team provides guidance and advice for addressing privacy compliance for the collection, access, use, dissemination and retention of administrative health and health-related data in research and program evaluation.

Since forming in 2020, the Privacy Team has developed a number of resources for HDRN Canada members and researchers to guide the application of data privacy best practices “One of our most popular resources is the Informed Consent Wording for Administrative Data Linking tool, which helps researchers design consent forms to inform study participants when study data is linked with administrative data,” Curtis Maillet said. “More recently, we created tools to help researchers requesting access to administrative data held at HDRN Canada member data centres for the purpose of secondary use of research, such as Top 10 Misunderstandings: How privacy compliance & Research Ethics Board Approval work together for research using administrative data.”

This year, the Privacy Team will begin developing its Data Privacy for Administrative Data training program, which will address timely data privacy topics related to the administrative data life cycle. The series will appeal to a broad audience, focusing on data privacy and security in the access, use and disclosure of personal information and personal health information for research use. “There is no shortage of work for the Privacy Team, given the growing complexities around our personal data and their protection. I expect this year will be another busy one!”

Data Privacy Week takes place from January 22-26. Visit the Office of the Privacy Commissioner of Canada for more information.

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