Don’t forget the harms of not sharing health data

Across Canada, we focus heavily on protecting health data, but not sufficiently on protecting against the harms of not sharing data. Privacy, defined as who sees what, and security, which assures protection from breaches of repositories where health data are kept, are certainly important. Unfortunately, our obsession with this side of the equation has blinded us from recognizing that health information must often be shared—between patients, providers, researchers, and policymakers—so that critical and informed decisions can be made. Addressing this imbalance cannot be left entirely to the provinces and territories. As a patient with multiple experiences within provincial systems, a career in technology, and more than a dozen years as a patient partner collaborating to change Canada’s health-care systems to be able to safely collect, use, and share health data, I believe it’s time we put the spotlight on what we lose when we don’t share health data. Alies Maybee is chair of the Patient Advisors Network and a member of the Expert Advisory Group of the Pan-Canadian Health Data Strategy. Photograph courtesy of Alies Maybee Health data and information are essential tools for clinicians to achieve the best care for people. Clinicians risk harming a patient when they don’t have a complete set of patient data. Individually, my health data are scattered. Each provider—both public and private—has an incomplete instance of me. Sharing of reports, when it occurs, is usually manual, reliant on the clinician’s schedule and capacity. Incomplete health data have contributed to clinician stress and helped drive our health human resource crisis. Clinicians cannot offer the best care to their patients when hampered by insufficient and incomplete data. They must chase information, wasting time and energy. More often than anyone wants to admit, they must make decisions knowing important data may be missing. Health data should also provide insights to service and system administrators to understand the outcomes being achieved at the population level, including diverse equity-deserving groups. This will help to understand where to appropriately allocate funding and the effects of funding decisions over time, and to understand public health threats and effectively address them. As more of us turn to the private sector for health services, we must be sure these data are shared across all providers, both public and private, and with public system administrators in a safe and secure manner. Personal health data held by private vendors of electronic medical records and by privately funded, often virtual providers, must also be legally available. Lack of access to privately held health data and the profit-driven motive cause public concerns and add dimensions of risk that must be addressed, soon. The federal government has a role to play in ensuring that private sector health data are part of the health-care ecosystem. We must move to “one patient, one record,” encompassing all our health data, no matter who holds them. When our data does not flow across providers and across jurisdictions, it results in harms to people. Many people in Canada receive their health services in more than one jurisdiction. Think of Ottawa-Gatineau; Manitobans who go to Thunder Bay, Ont.; those in the North who come to Ottawa, Vancouver, Edmonton, and Calgary. This is a safety issue. The resolution to this cannot be left entirely up to the provinces and territories working independently. The federal government must ensure health data flow from provider to provider, no matter where a person is receiving care. Let’s have a public conversation about how to balance privacy and security with the sharing of health data to help inform and adopt policies that work across the country. This requires that we all learn to speak the same health data language. Few people know that health data privacy is controlled by custodians who generally opt not to share data. We fret about privacy breaches causing harm, but don’t think enough about harms from lack of appropriate sharing of information. We need a co-ordinated plan for digital health literacy to improve our understanding of the issues so we can explore solutions together. Finally, Canadians want a universal health-care system that offers the same services and achieves the same outcomes no matter where, or who, we are. Achieving this requires a secure, person-centred, interoperable health data ecosystem that supports appropriate sharing of health data across jurisdictions, across all providers, no matter how they are funded, with assurances of privacy. For this to happen, all levels of government must collaborate with digitally literate members of the public to meaningfully support the necessary policy decisions across Canada. The time is ripe to finally balance privacy, security, and the sharing of health data in Canada to benefit us all. Alies Maybee is chair of the Patient Advisors Network and a member of the Expert Advisory Group of the Pan-Canadian Health Data Strategy, whose final report was released in 2022. The Hill Times