A Foundation for Person-Centred Health Systems
The Health Data Charter is the bedrock of the Collaborative.
Initially called the Canadian Health Data Charter, the Health Data Charter is a product of the Pan Canadian Health Data Strategy and the Expert Advisory Group (EAG). The EAG was an advisory body chaired by Dr. Vivek Goel, CM, and stood up by Public Health Agency of Canada at the behest of Provincial and Territorial Deputy Health Ministers to make recommendations for creating a ‘world-class health data system.’
The Health Data Charter
“Inspired by the universal human rights to health, to benefit from science, and to non-discrimination and equity, and founded on the five principles of public administration, comprehensiveness, universality, portability, and accessibility (Canada Health Act), this Canadian Health Data Charter reaffirms Canada’s commitment to “improving data collection across health systems to inform future decisions ...”
Speech from the Throne, November 23, 2021
To honour and use of the duty to put people and populations at the core of all decisions about the disclosure, access health data, the Canadian Health Data Charter requires:
01Person-centric health information design to ensure that health data follows the individual across points of care to support individual, clinical, and analytical access and use while respecting individual privacy with regard to the handling of their information under existing privacy legislation.
02Inclusion of diverse members of the public, patients, communities and other partners in culturally integrated health information system development and oversight.
03Commitment to support First Nations, Inuit and Métis data sovereignty and Indigenous-led governance frameworks
04Common standards for terminology, health data design, stewardship, interoperability, access, and portability.
05The quality, security and privacy of health data to maximize benefits, build trust, and reduce harm to individuals and populations.
06Timely availability and accessibility of meaningful and comprehensive health data to individuals, decision makers, the health workforce, and researchers to support an individual's health needs, quality health programs and services, population and public health, and research.
07The ethical use of health data to support decision making, policies, programs, services, statistics, and research for better health outcomes, while respecting the importance of open science and being open-by-design.
08Data-driven social and technological innovation through partnership, invention, discovery, value creation and international best practice.
09Literacy regarding health dataFootnote 2, health data analysis and digital methods for the public, decision-makers, the health workforce, and researchers.
10Harmonization of health data governance, oversight, and policy in areas jointly agreed to by FPT governments for pan-Canadian coordination.
The principles of the Charter constitute a solid, common ground for collaboration, decision, action, and evaluation.
Following Health Data Charter principles will cumulatively drive the harmonization of data and policies around person-centricity. This will yield greater health equity, better health outcomes, improved experience for patients and providers and better cost management.