The Declaration of Personal Health Data Rights in Canada was 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 working group undertook a brief review of the current landscape related to personal health data. Various drafts have been revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, patient groups, and citizen groups. Since the Declaration’s launch in June 2021, it has been endorsed by over 20 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.
The intent of the Declaration is 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.
PanCanadian Health Data Strategy Targeted Stakeholder Engagement Session
Background: COVID-19 has highlighted issues that are posing challenges to Canada’s ability to collect, share, and use health data for the benefit of Canadians. The Government of Canada is working in collaboration with provinces and territories, stakeholders and Indigenous groups to create a pan-Canadian Health Data Strategy. Development of the pan-Canadian Health Data Strategy (pCHDS) is guided by the latest research findings, as well as advice from stakeholders, public health experts and the pan-Canadian Health Data Strategy Expert Advisory Group.
Targeted Stakeholder Engagement Session:
· 1.5-2 hr facilitated sessions to explore practical solutions to make collective progress while overcoming systemic barriers that have been preventing the effective collection, sharing, and use of health data in Canada for the benefit of individuals, communities, and Canadians. These systemic barriers have been summarized in a recent report from the Expert Advisory Group.
