This Data Privacy Week, put privacy first
HDRN Canada will mark Data Privacy Week by highlighting the network’s privacy-first approach to administrative health data. Data Privacy Week, which takes place from January 27 to 31, occurs annually to promote awareness of the impact of technology on privacy rights and the importance of valuing and protecting personal information.
According to the Office of the Privacy Commissioner of Canada, putting privacy first supports compliance with privacy law, helping organizations to build trust with Canadians while empowering individuals to protect their right to privacy [source]. For HDRN Canada member organizations, putting privacy first means ensuring privacy is built into processes for facilitating access to administrative health data for multi-regional research. “From the application of regional privacy legislation to local policies and procedures to the delivery of data privacy training, privacy is front and centre,” said Dr. Donna Curtis Maillet, HDRN Canada’s Privacy Team Lead. “This aligns with the Privacy by Design framework, first developed in 2009 by former Privacy Commissioner of Ontario Ann Cavoukian and now adopted in legislation and data privacy standards the world over.”
From the application of regional privacy legislation to local policies and procedures to the delivery of data privacy training, privacy is front and centre. ~ Dr. Donna Curtis Maillet
HDRN Canada’s Privacy Team, composed of privacy professionals from across the country, advises the network on “privacy-first” solutions. “We offer 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,” added Dr. Curtis Maillet, who is also the Privacy Officer for HDRN Canada member New Brunswick Institute for Research, Data & Training. “When we put privacy first, we can identify opportunities to advance our mission of facilitating multi-regional health research while protecting data subjects. This includes the development and adoption of new privacy enhancing technologies (PETs).”
PETs are a set of emerging digital technologies, methods, approaches and tools that allow for data processing while protecting the privacy of data subjects. “These tools allow for the full function or utility of the data needed by analysts and researchers for participating in robust population health research but simultaneously provide privacy protection by reducing or removing risks associated with conventional research approaches.”
Dr. Curtis Maillet pointed to the leading edge work featured in Federated Analysis: State of the Science, a collective learning series spearheaded by HDRN Canada. “The series brings together leading thinkers and experts to discuss key topics related to federated analytics, including the role of secure research environments, current approaches and limitations of analysis, and considerations for use of artificial intelligence in these analyses.” The series also produced an online resource that showcases the latest research and advances regarding the state of the science of federated analysis.
Since forming in 2020, the Privacy Team has developed a number of resources to support researchers engaged in multi-regional research in using data privacy best practices, including the Informed Consent Wording for Administrative Data Linking Tool and Top 10 Misunderstandings: How privacy compliance & Research Ethics Board Approval work together for research using administrative data. A new training program, Data Privacy for Administrative Data, is currently in development and is due to launch next year.