Wolfson: In pursuit of a world-class health data system

Good arguments, challenge given complexity and jurisdictional issues. Some progress through programs like MyChart which makes managing my hospital-based visits and tests so much easier:

Canadians see new and increasingly powerful computerization in almost every facet of their day-to-day lives—everywhere, that is, except for something as fundamental as health care, where systems are too often stuck in the past.

Canadian governments have invested heavily to advance the use of health data, most often without a clear national vision. An incoherent approach for health data is hurting health outcomes, escalating sector costs and expanding inequities.

The health sector relies on data to guide almost every decision, from the choice of an antibiotic for treating an individual’s simple urinary tract infection, to national pandemic policies that affect millions of Canadians.  The challenge is that health and health-related data are so poorly organized and managed in Canada.

While health-care providers create and have responsibility for safe management of records of health care encounters, personal health information in Canada should be available to patients as well.

The reality is that patients continue to have limited access to or insight about data about them, as that remains under the de facto control of myriad and siloed health-service providers. The inevitable result of this scattered provider-centric rather than patient-centric approach is that patient data are typically spread among their various health care providers’ uncoordinated and unstandardized data systems. The result: both providers and patients have to work with incomplete and incoherent information.

The health sector has invested for years in digital technology in the mistaken belief it would immediately solve our health data woes. We have failed to realize the true obstacle to effective health data collection and use is not mainly technological, but a matter of policy and governance.

To realize its tremendous promise, health data in Canada must become centred around the individual. Services would be designed around people and by people. The “life flows” of patients and families would mesh with the “work flows” of providers and institutions. There would be one centrally accessible virtual digital record for each of us.

As patients move from home to care setting, and from provider to provider, data would remain seamlessly accessible for those in the patient’s “circle of care”; no need to repeat your health history for each new provider. Data flows about a person—who sees what—would be transparent to the person involved or to their proxy.

Health-care providers would continue to access personal information for the purposes of individual care, while a new role—health-data stewards—would be mandated to curate population-based data for public good while ensuring privacy and confidentiality.

How can we make this vision a reality in Canada?

This will only happen with a fundamentally reimagined approach to health data policy and governance for the digital age, grounded in mutual trust. Governments need to trust the public by providing clear and complete information, with people in Canada trusted to act for the good of the community. The public would be involved in policies regarding health data collection, sharing, use and communication. And governments need to make real their commitments to respect Indigenous data governance.

Governments must also trust each other and recognize the over-riding importance of coherent pan-Canadian data.  At present, each province and territory has its own health data policies, standards and governance, with very little active coordination across borders. Even in the area of death certification, where the vital statistics registrars have worked together for many decades, we have the current failure to agree on and report COVID-related causes of death in a standardized manner.

Accessing the routinely collected data that do exist is a marathon for fully authorized researchers, for example to study post-marketing drug safety and effectiveness. Even with all the available approval processes in place, it has still proven impossible to analyze these kinds of data for the country as a whole.

These pervasive blockages to generating coherent and timely pan-Canadian information seriously impairs our ability to respond to public health threats and generate insights that could improve health outcomes for all.

Ultimately, we need to rethink—not rejig—how we manage and use health data. The Pan-Canadian Health Data Strategy report, authored by an Expert Advisory group, points out the need for a culture shift in health data use. Public input has to be part of the transformation to person-centred health care and health data systems.

Of course, updating health data systems has costs. But given the tens of billions of health-care dollars the federal government is providing to the provinces through fiscal transfers, it is long past time the federal government leveraged this clout—using both carrots and sticks—so that people in Canada can finally have informed, accessible health data when and where they need it most.

Michael Wolfson is a former assistant chief statistician at Statistics Canada, and a current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics. Vivek Goel is president and vice-chancellor of the University of Waterloo. Both are members of the Expert Advisory Group on the Development of the Pan-Canadian Health Data Strategy.

Source: In pursuit of a world-class health data system

About Andrew
Andrew blogs and tweets public policy issues, particularly the relationship between the political and bureaucratic levels, citizenship and multiculturalism. His latest book, Policy Arrogance or Innocent Bias, recounts his experience as a senior public servant in this area.

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