SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. Developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit, the Declaration of Personal Health Data Rights in Canada is intended to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.
The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 patient groups as well as 9 individual patients and caregivers.
Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.