HDRN Canada’s Public Advisory Council Launches Health Literacy Month Campaign
What is health data? Who can access it? How is it protected? And what rights do you have to information about your own health?
Throughout October, HDRN Canada’s Public Advisory Council (PAC) is tackling these questions as part of Health Literacy Month, a month dedicated to improving people’s ability to access, understand, evaluate and communicate health information. According to the Canadian Public Health Association, more than half of adults and 88 per cent of seniors living in Canada have “less than adequate health literacy skills” [source]. This is problematic because “health literacy is a significant factor in health care disparity and equity,” with lower levels increasing the chances of negative health outcomes [source]. “Our goal is to help people better understand how their health data is collected, used and protected—and how it can contribute to better health care and health systems,” PAC Chair Bill Pratt said of the weekly social media campaign.
Using the hashtag #HDRNCanadaPAC, the campaign begins with the basics: what is health data? “Health data comes in many forms — personal health data, administrative health data, research data, and data collected by private sector and industry organizations,” explained Terrie Wainwright, a member of the PAC. “Each type serves different purposes and is protected by different regulations and safeguards.” Privacy laws and policies establish requirements for how health information can be collected, accessed, used, shared, retained and disposed of. In Canada, health information is protected by provincial and territorial privacy laws, as well as federal privacy legislation, which covers both public and private-sector organizations.
The campaign then takes a closer look at personal health data—information related to a person’s health and health care, such as medications, symptoms, diagnoses, surgeries, vaccinations and medical history. “We’re focusing on personal health data collected through Canada’s public health care system,” noted Dr. Donna Curtis Maillet, HDRN Canada’s Privacy Team Lead. “Health professionals involved in a person’s care may access the information they need to provide care, but privacy laws, organizational policies and security safeguards are in place to protect your personal health information from unauthorized access.”
The campaign also explores administrative health data, which is generated when people access health care services, like filling a prescription or visiting a doctor’s office. It can include information about diagnoses, procedures, medications, health care providers, facilities and use of health services. “Administrative data is not originally collected for research or health system planning,” said Jagger Mercer-Adams, a member of HDRN Canada’s Public Engagement Team. “But it can provide valuable insights to researchers that help improve health care. For example, it can support decisions about staffing, service delivery and wait times, he continued, noting that when administrative data is used for health research, access is subject to privacy, security and governance requirements. Direct identifiers, such as names and health card numbers, are removed or replaced with non-identifying information, and access is restricted to approved users for specific purposes.
The campaign also looks at research data, which is intentionally collected to answer questions about health and health care. Surveys, interviews, focus groups and other research activities can help researchers understand barriers to care, patient experiences, health differences between populations and how to improve health care delivery. Research involving people must follow appropriate consent, ethics and privacy processes. Research Ethics Boards help ensure participants’ privacy, confidentiality and welfare are protected. The campaign concludes by looking at access to health information. “People living in Canada have rights to request access to personal health information held about them and, in many circumstances, to request corrections,” commented Pratt. He emphasized the important role of patients, caregivers and members of the public in shaping health research and decisions about how health data is used.
The goal of the Health Literacy Month campaign is simple: make health information easier to understand. By building health data literacy, HDRN Canada’s Public Advisory Council hopes to help people make informed decisions about their care, understand how data contributes to better health care, and participate in conversations about the future of health data in Canada.
Follow #HDRNCanadaPAC throughout October to learn more.