About Health Data Research Network Canada
HDRN Canada is a network of leading federal, provincial and territorial organizations that hold health data. HDRN Canada was created to connect individuals and organizations across the country to increase the ways that health data are used for public benefit, while protecting privacy and ensuring research is aligned with public values and Indigenous data sovereignty.
Under HDRN Canada, organizations that store and manage health data have come together to make it easier for researchers, analysts and policy makers to use data from multiple provinces and territories to identify what is and isn’t working in our health systems. In order to protect privacy, HDRN Canada organizations work with data that has direct identifiers removed, which means that researchers don’t have access to information such as names, addresses, or Personal Health Numbers, that identifies people. By working together, HDRN Canada will help organizations learn from each other’s experiences, tackle shared challenges, and ultimately, improve public health and strengthen the healthcare system for all Canadians. The enclosed slide deck has more information about HDRN Canada and about health data.
Why HDRN Canada is establishing a Public Advisory Council
HDRN Canada is committed to including members of the public in decisions about health data through its Public Advisory Council (PAC). Beginning fall 2020, the PAC will advise HDRN Canada about short-term, medium-term, and long-term priorities and identify issues, risks and opportunities for HDRN Canada to address.
HDRN Canada is focused on research that improves the health of the whole population, including people who have illnesses and people who don’t. For that reason, the 12-15 members of the PAC will include people who have prior experience as patient representatives and advisors, but most PAC members selected from among the much wider pool of people who have not been in such roles. While we welcome applicants who have been actively involved in topics related to health data research (e.g., privacy, patients accessing their own data), applicants should note that the PAC will advise on many topics vs. advocating for HDRN Canada to act on any single issue.
HDRN Canada is committed to hearing from people with diverse experiences and perspectives related to geography, age, gender identity, occupation, language, culture, ethnicity and other characteristics.
PAC meetings will be conducted with live remote simultaneous French/English and French/English translation. The PAC will have at least three members who have French as their first language, at least one of whom will reside outside of Quebec. All written materials prepared by HDRN Canada will be provided in both English and French.
We are taking applicants for the PAC until July 13, 2020. Thank you in advance for taking the time to complete this application form. Applicants who are selected for an interview will be contacted directly by HDRN Canada staff. You may contact email@example.com if you wish to withdraw your consent to share or use your information.