Opinion: Health data needs to be connected and governments made accountable
Canada’s health data are a shambles. During COVID-19, public health officials often could not even connect who was vaccinated with who was in hospital gravely ill. Beyond the pandemic, doctors are becoming more outspoken about their inability to access patients’ health-care data. Canadians themselves often have hassles accessing their own lab and diagnostic imaging results. Interoperable health data would make these problems go away. The proposed federal Connected Care for Canadians Act (Bill C-72) is a critical step toward improving the health of Canadians. But we need to monitor progress and hold our governments accountable. Only throwing money at the problem is not enough. The federal government has provided hundreds of millions of dollars in cash to the provinces explicitly to improve their health data. One major blockage has been private sector vendors. They want to lock in hospitals or doctors’ offices to their own software by making it virtually impossible to switch to another vendor’s software. Bill C-72 proposes to make data “blocking” by health data software vendors a criminal offence. This sounds wonderful. But decades of largely ignored reports have shown just how difficult it is to make progress to improve Canada’s health information landscape. Moving forward on Bill C-72 is essential. But so are clear indicators to make sure it’s working. In a recently released article in the Canadian Medical Association Journal, I argue that three indicators are essential to measure success on health data interoperability. Vested interests have so far successfully blocked significant progress to improve Canada’s health data. A weak indicator like a survey asking physicians how much they feel they can adequately access the relevant portions of their patient’s electronic medical records (EMRs) will not do. Serious efforts to assess progress toward health data interoperability require investment in what is effectively an arm’s length audit process that actually tests the extent of real-world electronic health data interoperability. The three sets of indicators I propose to monitor our progress are based on the Health Data Charter principles recently endorsed by federal, provincial and territorial governments. The first starts with the principle that health data should be person-centric. Canadians should be able to readily access their own EMRs. The second set of indicators assures all the health-care providers involved in a patient’s “circle of care” can access their patient’s EMR, subject to important limits, sometimes called “role-based permissions,” e.g., that the provider of a lab test should not be able to see all the patient’s diagnoses, while their primary care provider should be able to see all the drugs their patient has been prescribed, including by other providers. The third set of indicators assesses how well statisticians and epidemiologists can access large samples of EMRs to improve the health-care sector overall. The pandemic revealed bad decisions were made because there were too many data blockages to allow, for example, better-targeted vaccination strategies and more limited lockdowns. More generally, there is evidence that rates of surgical procedures, like cardiac revascularization, vary far more widely than explained by differences in the individual health profiles of heart attack patients. But without read-only access to large samples of individuals’ EMRs (names and addresses removed, but still potentially identifiable) by duly authorized analysts in provincial health quality councils and health technology assessment organizations to these kinds of EMR data, Canada will continue to waste money and cause undue stress, even harm, via ineffective treatments. Achieving effective health data interoperability will require major effort across many organizations and will take time. To ensure progress and accountability, Canadians need to invest the resources now to undertake arm’s length audits and to publish the indicators so we make progress. Anything less will allow Canada’s health data to continue to be the shambles it’s been for decades. Michael Wolfson is a former assistant chief statistician at Statistics Canada and current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics.
