Health data are important to researchers because they include information about health care services, health status, individual risk factors, such as diet, exercise, smoking or alcohol consumption, and social risk factors like socioeconomic status, neighbourhood of residence, and housing, all of which can provide critical insights into the wellbeing of populations. Researchers use health and health-related data to learn about which health services are working, what needs to be improved, where other health-supporting services are required and how to help individuals, communities and societies stay healthy.
HDRN Canada facilitates researcher access to health data from multiple regions across Canada in order to increase the quality of studies on health-related issues that affect all of us, like hospital wait times, chronic illnesses, mental health and disease prevention, and to strengthen the quality of research findings. We enable multi-regional data access in a way that respects privacy law and promotes Indigenous data sovereignty. But it’s not all about researchers. We believe strongly in the importance of public involvement and influence in the development of health data systems. That’s why we created HDRN Canada’s Public Advisory Council, which works closely with our Public Engagement Working Group to ensure the meaningful public engagement in HDRN Canada’s overall work and goals.
Public Advisory Council
The Public Advisory Council provides guidance to HDRN Canada on matters related to the intersection of health data and the public interest.
Building Up and Out from a Learning Collaborative Network: A Position Paper submitted by Health Data Research Network Canada (HDRN Canada) to the New Digital Research Infrastructure Organization (NDRIO) (December 9, 2020)Population Health Digital Research Infrastructure
A report on public perspectives: Building on a decade of research into publicly supported uses of health data, Social Licence for Uses of Health Data: A Report on Public Perspectives adds the voices of 20 experienced public and patient advisors to the discussion about what uses and users of health data have “social licence.”Social Licence for uses of Health Data
The Conversation (January 22, 2023)How can health data be used for public benefit? 3 uses that people agree on
The Conversation (October 9, 2019)Plain language about health data is essential for transparency and trust
The Conversation (October 6, 2019)The public needs to know why health data are used without consent
The Conversation (September 10, 2020)Health data collected during the coronavirus pandemic needs to be managed responsibly