Health data governance and policy have significant shortfalls that impair health care delivery in Canada and cause data-related harm, according to a new report by the Alberta Virtual Health Care Coordinating Body.

Outdated, misaligned or absent health data public policy – across and within jurisdictions – is perpetuated by the lack of a mechanism or accountability to adopt harmonized and purpose-designed health data public policy that upholds quality health programs and services, says the report, Data Disarray: A Root Cause Analysis of Health Data Dysfunction in Canada.

“The overarching picture that emerges is of a public policy environment that has not been designed, but rather evolved in the absence of a coordinated or informed plan, and generally fails to support the opportunities offered by contemporary digital health information technology,” the report says.

The Alberta Virtual Health Care Coordinating Body is an advisory oversight committee created by its sponsoring organizations and groups to promote principle-based health data governance, policy, regulation, workflow and technology alignment across the health sector that promotes quality health programs and services.

Canada’s poor performance in integrating digital technology and data into health systems has been pointed out in previous reports.

A 2023 review of the Canadian response to the COVID-19 pandemic in the British Medical Association Journal concluded, “the picture that emerges is an ill-prepared country with outdated data systems, poor coordination and cohesion, and blindness about its citizens’ diverse needs.”

Likewise, a 2022 study by the RAND Europe research group suggested that fragmented health data in Canada arises from “a lack of integration, standardization and interoperability of the technical infrastructure” that is depriving Canada of almost $6 billion in projected savings annually.

Connecting the Dots, a 2023 report from the Council of Canadian Academies (CCA), found that “although Canada has worked for decades to improve the collection and use of health data, it has largely failed to share those data efficiently across organizations, regions, and provincial/territorial borders.”

 The CCA’s report concluded that “the barriers that prevent the establishment of robust health data sharing systems are not technical, but rather fundamentally political and cultural.”

The Expert Advisory Group of the pan-Canadian Health Data Strategy came to a similar conclusion in 2022, stating that “failure to collaborate across Canada to build a learning health system risks continued escalation of health care costs, underperformance of health services and poor health outcomes including avoidable illness and death, low levels of innovation, perpetuation of health inequities, and ineffective responses to future public health threats.”

The advisory group concluded, “At an extreme, there is a risk of irreparable fragmentation of health data that will harm individuals, communities, and all of Canada due to unaligned and often competing interests that may erode the common values that have defined our health system to date.”

In October, the federal government released the report by the Expert Panel for the Review of the Federal Approach to Pandemic Science Advice and Research Coordination, chaired by Sir Mark Walport, a U.K. health administrator and chief executive of UK Research and Innovation.

That report said the COVID pandemic “highlighted severe shortcomings of health data systems [in Canada] and an inability to conduct timely and adequate observational studies, including infectious disease surveillance, and clinical trials.

The Walport panel consistently heard about Canada’s “fragmented data system,” including challenges in collecting and accessing both public health and health care data, which are essential for important research, scientific advice and health delivery.

“The timely collection of key data, and the sharing of these data between health care systems, levels of government and research institutions, was a key barrier to a well-coordinated and consistent national response to the pandemic,” the Walport report said.

The new report by the Alberta Virtual Care Coordinating Body concludes that the oversight and regulation of many properties of health data that could promote quality of care and mitigate potential harm are almost uniformly absent from public policy.

This includes assurance that data is used to promote the health and wellbeing of individuals and populations, foster insights through secondary data use, minimize provider burnout, and promote health system efficiency.

Rather, the current public policy approach to health data appears to hinder adherence to the core conditions of the Canada Health Act, notably portability, universality, accessibility and comprehensiveness of health service, according to the report.

This may arise from a widespread lack of health data literacy anchored in a poor appreciation of the intimate relationship between health data and quality health programs and services, the report says.

“Attention to health data seems to have been lost in the clamour to procure new and often disconnected information technologies, a drive buttressed by the structural fragmentation of health system oversight in Canada, and the legislated fragmentation of personal health information.”

The resulting harm to people, populations and the health care system – dating back decades –seems scarcely to have been noticed, the report says.

Achieving cooperative health data interoperability has been hindered by a will to preserve jurisdictional, organizational and professional data autonomy. “Ultimately the needs of the patient, whom the data belongs to, have not been heard.”

To achieve optimized data function, an evidential, cooperative and harmonized approach to health data governance and public policy is required across all levels of service and health system oversight, the report says.

The public and Indigenous communities as the rightful beneficiaries of their data must be meaningfully engaged in this collective effort, the report adds.

The report says that a wholesale reimagination of health data governance and public policy is required in Canada.

Without such an effort, it says, individuals, health care providers and the health care system will continue to suffer from manifold forms of harm, including morbidity, mortality, financial cost, health provider burnout, and legal and cultural harm.

Highlights of the report’s findings across various themes include:

Health data governance:

• It is unclear who oversees the design and use of health data in Canada, both in the provinces and the territories.
• Health data oversight has largely defaulted to the provinces and territories, but is not mandated in public policy.
• There is no established mechanism for harmonizing health data public policy across health system stakeholders and jurisdictions.

Existing health data and regulation:

• The current custodial model of health data oversight employed in most jurisdictions unintentionally fosters the fragmentation of health data and promotion of health data-related harm.
• The scope of legislative and regulatory oversight of health data is largely consistent across provinces and territories, focusing almost exclusively on access, privacy and the security of health information.
• Although health information legislation in Canada is generally permissive of sharing health data for legitimate health service, it does not obligate such sharing to support health and wellbeing.
• Patient access to health information is generically enabled in legislation, but not enforced in digital health technology design and regulation.

Health data policy gaps:

• Canadian public policy at all levels has traditionally neglected to identify if, or how, health data is to be designed and used to support the provision of quality health programs and services.
• There is a consistent absence of the acknowledgment of most forms of health data-related harm, including the capacity to damage the health and wellbeing of Canadians and the health workforce, at all levels of health data public policy in Alberta and Canada.
• The integration of principles of Indigenous data sovereignty into health data design and use is often absent in governmental public policy.
• Health information technology is almost wholly unregulated with respect to its capacity to promote the health and wellbeing of Canadians, mitigate harm and foster innovation.
• Individuals who design and use health data systems in Canada do not require any data literacy training, defined credentials or knowledge assets.

Based on the findings, the report made the following recommendations in several areas:

Accountability to quality health programs and services:

• Health data public policy must promote the provision of quality health programs and services.
• Health data public policy must minimize all forms of health data-related harm, meaning:

--  Breaches of health data privacy and security.

--  Damage to physical or emotional health and wellbeing.

--  Breaches of cultural rights to personal or community health data.

-- Breaches of legal and ethical rights to personal health data.

--  Failure to benefit from science and use health data for public good.

--  The misuse of data to create misinformation or circumstances that may intentionally or unintentionally promote discrimination, inequities or profit without social license.

--  Failure to optimize health system function and efficiency.

--  Damage to health workforce wellbeing.

--  Failure to support health innovation.

Governance:

• There must be clarity about health data oversight in Canada:

--  Is health data a federal, provincial/territorial, Indigenous, or shared power and, if shared, what is the distribution of accountability?

--  Within provinces and territories establish who or what peoples, organization(s), or authority oversee(s) health data design and use?

• Health data legislation should support the principles of Indigenous data sovereignty and governance, and mandate mechanisms to tangibly implement principles in collaboration with Indigenous communities.
• Optimized health data public policy must be developed in the context of open and transparent public and Indigenous consultation, and through the meaningful inclusion of public and Indigenous representation in strategic oversight.
• Health data legislation should be harmonized across Canada through a model law approach.
• A functional process for harmonizing jurisdictional health data legislation and public policy should be established.
• Health data design and use should be accountable to the principles of the pan-Canadian Health Data Charter.
• The five conditions of the Canada Health Act should be applied to the design and use of health data as suggested by the pan-Canadian Health Data Charter, specifically:

--  Health data public policy should uphold the portability, accessibility, universality and comprehensiveness of health data.

--  The implications of the public administration of health data should be considered to clarify the use of personal health information to support quality health services and programs, open science and digital health innovation.

--  Consideration should be given to amending the Canada Health Act to embed accountability of jurisdictional Health Quality Councils to the spirit and intent of the Act, thereby promoting quality of care by mandating quality council oversight of the portability, accessibility, universality and comprehensiveness of health data.

• Health data public policy must foster person-centric health data architecture.
• There should be comprehensive health data legislation that incorporates, in one or more complementary acts:

--  Accountability to the pan-Canadian Health Data Charter.

--  Accountability to the provision of quality health programs and services.

--  The mitigation of all nine forms of health data-related harm.

--  Compulsory patient access to their comprehensive personal health information in a digital format that is open and portable.

--  Conditions to support person-centered health data architecture.

• Health information privacy legislation must move beyond mere permissibility of data sharing to a duty to share personal health information within the bounds of appropriate privacy and security safeguards, to foster quality health programs and services, and minimize all forms of health data-related harm.
• The custodial model should be evolved to a stewardship model of health data oversight as proposed in the third report of the pan-Canadian Health Data Strategy Expert Advisory Group.
• Examples of best practice, like the European Health Data Space, should be leveraged to inform evidential Canadian health data public policy.

Regulation:

• To support comprehensive team-based care, all health professionals should be governed by the same health data legislation and regulations or, otherwise be enabled to interact with health data in a consistent manner when performing similar duties, regardless of workplace location or context.
• To uphold the health and wellbeing of the public and the capacity of their members to provide competent and compassionate team-based care, health profession regulators should advocate for:

--  The harmonization of health data legislation and regulation across all health professions.

--  The regulation of health information technology.

• Health profession regulators should adopt data literacy standards for their registrants and compatible health data standards of practice based on a model law approach that supports person-centric team-based care.
• Health information technology should be regulated for safety in alignment with other medical devices covered in the Food and Drugs Act.

Health data literacy:

• Health data literacy must be promoted for the health workforce and the public alike.

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