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 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.

You can read the Full Declaration here

You can read the Executive Summary of the Declaration here

Patients Redifining The Furture of Health Care in Canada.
Endorsements as of June 14, 2021
HeartLife Foundation
Canadian Spondylitis Association
Canadian Psoriasis Network
Unmasking Psoriasis
hpv global action
Lung Health Foundation
rethink breast cancer
The Life Raft Group
Carcinoid-NeuroEndocrine Tumour Society Canada
Canadian Congenital Heart Alliance
Myeloma Canada
Schizophrenia Society of Canada
Save Your Skin Foundation
All Can Canada
Canadian Council of the Blind
Alan Husng, Vancouver, BC
Alies Maybee, Toronto, ON
Amy Ma, Montreal, QC
Andrea Redway, Ottawa, ON
Gillies Carson, Mont-Tremblant, QC
John Sawdon, Whitby, ON
Margriet Eygenraam, Brampton, ON
Michael Eygernraam, Brampton, ON
Robin Sully, Ottawa, ON

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