But we also need to measure our progress and keep our governments accountable
Canada’s health data are a shambles. This was especially apparent during the recent pandemic. During COVID-19, public health officials often could not connect who was vaccinated with who was in hospital gravely ill.
Beyond the pandemic, doctors are becoming more outspoken about how their inability to access patients’ healthcare data is proving fatal to some of their patients. And Canadians themselves often have serious hassles accessing their own health data, such as lab tests and the results of diagnostic imaging.
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 get it right and put measures in place to monitor our progress and hold our governments accountable.
We know that only throwing money at the problem is not the solution. The federal government has provided hundreds of millions of dollars in cash to the provinces explicitly to improve their health data.
One of the blockages has been private sector vendors whose incentive is to lock in a hospital or doctor’s office to their own software by making it virtually impossible to switch to another vendor’s software.
Remember when changing your cell phone provider meant you had to change your phone number? A regulation made that illegal, so phone numbers are now portable, thereby improving competition and incentivizing innovation. Bill C-72 proposes to make data “blocking” by health data software vendors a criminal offence.
While this sounds wonderful, and maybe it will work, decades of largely ignored reports and studies have shown just how difficult it is to make progress to improve Canada’s health information landscape, even with well-meaning regulatory change.
Moving forward on Bill C-72 is essential. But so is putting sophisticated mechanisms in place to make sure it’s working. In a recently released article in the Canadian Medical Association Journal, I argue that there are three essential indicators to measure our success on health data interoperability.
Of course, these indicators for assessing progress must be meaningful. Vested interests have so far successfully blocked significant progress to improve Canada’s health data. An example of a weak indicator would be a survey asking physicians how much they feel they can adequately access the relevant portions of their patient’s electronic medical records (EMRs).
If we are serious about assessing progress toward health data interoperability, there needs to be 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 on health interoperability 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. This means that Canadians should be able to readily access their own electronic medical record (EMR).
The second set of indicators builds on the idea that all the healthcare providers involved in a patient’s “circle of care” should be able to access that patient’s EMR, subject to important limits. These limits are 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 is designed to assess how well statisticians and epidemiologists can access large samples of EMRs to improve the healthcare sector overall. The pandemic revealed bad decisions 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 can be 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 quite a few years. Canadians now need to invest the resources required to undertake arm’s length audits and to publish the indicators so we make progress
These indicators will be essential for holding governments and relevant organizations accountable. Anything less will allow Canada’s health data to continue to be the shambles it’s been for decades.
Photo courtesy of DespositPhotos
