Timely Availability and Accessibility of Health Data: Meeting the Challenge of Pan-Canadian Health Charter Principle 6

Abstract

Pan-Canadian Health Data Charter Principle 6 envisions health data that are timely, accessible, meaningful, and comprehensive. This paper examines three dimensions of this principle: what is envisioned for health data, for whom, and for what purposes. Comprehensive data include publicly funded care, privately paid services, patient-reported outcomes, and social determinants. To be meaningful, data require standardization and quality assurance. Timely access ranges from real-time clinical use to dependable research access. Accessibility depends on interoperable systems and secure environments. Current practices fall short across all dimensions, with fragmented, incomplete, and delayed data limiting timely access and effective use. Access and coverage remain uneven, reflecting structural and policy barriers. Despite these challenges, there are promising initiatives such as efforts to enhance national data stewardship. Advancing Principle 6 will require involvement of all interests in health data, including data stewards, policy-makers, providers, data users, and members of the public.

Introduction

Pan-Canadian Health Data Charter Principle 6 calls for timely availability and accessibility of meaningful and comprehensive health data to individuals, decision makers, the health workforce, and researchers to support an individual’s health needs, quality health programs and services, population and public health, and research. All of the Charter’s principles are inter-related in numerous ways, with principle 6 having a more direct relationship to Principle 7, which is about an ethical approach to all uses of data, Principle 8, which emphasizes data-driven social and technological innovation, and Principle 2, which calls for ongoing involvement of the public in data design and oversight.

We examine three distinct dimensions to the sixth Charter principle: what the Charter envisions, for whom, and for what purpose. This article will address each of these dimensions, assessing how current practices do or do not align with the ambition set out in Principle 6. We then identify recommendations for making progress towards that ambition.

What Does the Charter Envision?

According to Charter Principle 6, health data should be timely, accessible, meaningful, and comprehensive.

Starting with the last requirement, “comprehensive” generally refers to something that is complete and without gaps. Comprehensive data should be considered in relation to Principle 1 on person-centred data design while also acknowledging the influence of social and physical environments on health. Putting an individual at the centre implies that comprehensive health data would include data from: all publicly funded healthcare and public health services use (which is about 70% of total spending¹); all privately paid healthcare and public health services, whether through insurance or out of pocket; electronic medical records; individuals’ reports on experience with care^2,3; individuals’ assessments of their health-related quality of life (also known as patient-reported outcomes^4,5); apps, devices, monitors, genetic testing, and other measures; data describing social, economic, and environmental factors that influence health at individual and area levels; and other health data that will continue to develop and evolve over time (e.g., microbiome, wearables).^6,7 Comprehensive would also mean seamless accessibility to health data that are generated in different places, including across provinces and territories in Canada.

“Meaningful” data are data that have been checked, cleaned, and organized so that the semantics of what is recorded by the data are clearly encoded in standard formats. These steps, which require infrastructure and personnel investments, are all aspects of data quality,^8-10 and are necessary for data to be used easily and with confidence. For example, annual data sets must be assessed for any changes in their contents, as well as changes that might affect interpretation, such as data collection or coverage. Accordingly, annual data sets are usually released in a format consistent with previous years. This consistent formatting makes them easier to use, for example, by enabling simple application of established processes for standardized analysis and reporting.

Canada’s constitutional federation and formal, legal commitments to the United Nations Declaration on the Rights on Indigenous People^11,12 place responsibility for publicly-funded healthcare and public health delivery mainly with provinces and territories and increasingly Indigenous nations and communities. This political structure creates differences in what data are collected and how they are collected (e.g., classification and coding systems) across the country. In some cases, differences in data reflect differences across provinces and territories in policies and eligibility for services outside of hospital and physician services covered by the Canada Health Act.¹³ Individuals’ employment status (which influences access to private insurance coverage¹⁴) and income also lead to differences in what private services are (or can be) purchased, creating differential healthcare access and information biases. This means that documentation such as metadata and harmonization of data, for example, through common data models¹⁵ or content standards¹⁶ are essential prior to data use that spans provinces and territories.

“Timely” means that data access is speedy, that it is dependable or reliable, and that the data provided are up-to-date. For example, timely access to data for providing clinical care, or for individuals’ own purposes, implies immediate access to organized and current information. Timely access for other purposes, such as quality improvement or research, implies dependable access to curated, comparable data that are reasonably current. The promise of data access requests being fulfilled within weeks is preferable for most researchers compared to a timeline measured in months. At the same time, certainty of provision on a specified date is more helpful than an open-ended process. Access to data that are a year or two old, even if that access occurs quickly, can make analyses less relevant and actionable for many research questions. Faster access is always preferred, but there are costs associated with reducing latency as there are with enhancing data curation, and quality. Efficient allocation of resources therefore requires calibrating the degree of timeliness and quality to the need or intended use of the data. Ideally, an infrastructure composed of interoperable and modular data sharing components would exist to enable access to data with differing degrees of timeliness and quality to meet the different needs of data users as efficiently as possible.

“Accessible” means that data can be used, and this can be accomplished in many ways. Individuals can have access to health data through portals provided by healthcare systems. Individuals can also access different types of health data through smart phone apps and wearables. Providers access data through a variety of clinical information systems (e.g., Electronic Medical Records, Electronic Health Records, Laboratory Information Systems, Picture Archiving and Communications Systems) and/or through reports that aggregate information across patients, practices, or provinces. Public health agencies access health data directly from healthcare settings (e.g., laboratories and vaccination clinics) and from a broad range of data partners including local, provincial, and federal governments. Other users can receive data sets or (now more commonly) can access data through specially designed physical or virtual trusted environments.^17-19 Trusted virtual environments that allow authorized users to access and analyze data remotely can remove the “friction of distance,” making health data use more equitable for users outside metropolitan areas or larger institutions. Newer technological and analytic developments are also making it possible to analyze data that are located across multiple secure environments, meaning that data do not have to be moved to the same location to produce the highest quality scientific output.^20,21

The current state of Comprehensive, Meaningful, Timely, and Accessible Data

Health data are currently neither comprehensive nor organized in the person-centred way envisioned by Charter Principle 1. The focus to date has been on data needed to administer publicly funded health services, but even in that context, the most accessible data are for hospital services, and data sources become increasingly less complete and well-curated for specialist physician care, less so again for primary care and public health, and again for long-term care facilities and community- and home-based services. There is limited information on services paid through insurance or out-of-pocket, with the exception in some provinces of comprehensive information on prescription pharmaceutical dispensing regardless of payer.²² There is very little routinely collected information on patient-reported experiences or outcomes and social determinants of health, despite recognition of the importance of this information for understanding the impact and outcomes of care.^23-25 While some data are well-curated, meaningful, and ready to use, the lack of comprehensive data implies there is a long distance to go to achieve “meaningful” status.

There are also challenges with timeliness. In the healthcare services delivery context, the challenge is interoperability and related to that, efforts to enable individual access to personal health data (both of which are addressed directly in other papers in this series). In public health, delays in data access within and across jurisdictions hamper efforts to control epidemics and address health inequities. There are also long-standing and well-documented challenges with timeliness for access to data for research and other purposes.²⁶ These issues are so entrenched that they have been the subject of two separate reports and sets of recommendations from the Canadian Council of Academies^27,28 and were a feature of recommendations from the Expert Advisory Group on the Pan-Canadian Health Data Strategy²⁹ which led to the development of the Pan-Canadian Health Data Charter and the development of a vision for public health surveillance in Canada.³⁰

The accessibility of data, once approvals for that access are in place, is aided with a growing variety of virtual secure environments and methods for federated data access. These are increasingly being built using commercial cloud environments which is raising concerns about cybersecurity^31,32 as well as data and compute sovereignty.³³

To summarize, we are currently falling short on all aspects of timely, accessible, meaningful, and comprehensive data. In contrast, other jurisdictions, including many countries in Europe and the European Union overall, are working to address these challenges through the European Health Data Space and related Health Data Access Bodies.^34-36

Availability and Accessibility for Whom?

Charter Principle 6 starts with a focus on availability and access for “individuals.” This principle does not address directly who “owns” health data; despite ongoing debate often focusing on the potential to monetize health data, personal information (which includes personal health data) is not seen as capable of individual ownership.³⁷ A Supreme Court ruling from 1992 differentiated between an individual’s interest in their health data, and right of access to those data, explicitly rejecting a property right.^37,38 The provider, institution, or payer was seen as having a property right in the physical record.

However, there are other entities with an interest in accessible and available health data including decision makers, the health workforce, researchers and the public. These interest holders can be grouped in many ways, but they include patients and families, providers, those working in and around health systems, and those external to health systems who study all aspects of them. The commitment to availability and accessibility of health data for these interest holders implies that providers and institutions also have stewardship responsibility. More generally, this range of data stewards and interest holders makes it clear that no single entity has all the pieces of the data puzzle. The word “stewardship” is used deliberately, given the contentious nature of “ownership.” Stewardship is defined here as carrying out responsibilities that are entrusted to an individual or organization, with an expectation of sound and ethical management on behalf of current and future generations and accountability for social, environmental, and economic outcomes.^39-41

The current state of availability and accessibility for whom

In March 2026, the Canadian Institute for Health Information published data showing that 13.2% of people in Canada reported having online or digital access to core components of health data such as lab results, current medications, and immunizations.⁴² This limited access is likely a combination of people who have not been able to navigate an access process and those for whom such data are not organized and made available. Challenges for researchers were described above, and many working within health and public health systems face similar obstacles. Researchers who are not based at universities or affiliated institutes, for example, those working at non-profit institutions or in the private sector, often do not have clear pathways for requesting access to health data or information derived from those data. As noted above, the solution will be an interoperable system of sharing that enables any authorized entity to obtain a comprehensive and timely portrait of health for an individual or population. Given the range of users, this could be provided either through access to data or through access to services that create information from data.

There are encouraging initiatives in this area, most notably the development of a Data Stewardship Framework led by the Canadian Institute for Health Information.⁴³ This framework was developed with federal, provincial, and territorial partners, and with consultation from a broad range of interests across Canada, and will align with and support First Nation, Inuit, and Metis data governance and sovereignty. It was endorsed by the Conference of Deputy Ministers and as of early 2026 CIHI is working with partners towards collective implementation of all aspects of the framework. If successful, this is likely to have a positive impact on meeting the objectives of Principle 6, given that stewardship considers all aspects of data collection, curation, and use.

Availability and Accessibility for What?

We generally talk about use of health data as having both primary and secondary uses. One primary purpose would be, as Charter Principle 6 states, “…to support an individual’s health needs.” Other uses, which might be a combination of primary and secondary use, include “…quality health programs and services, population and public health, and research.” Overall, this speaks to the many different purposes of health data, from taking care of your own health, to managing patients and a practice, to providing public health, to designing, planning, and evaluating services, new technologies or policies, to development of new interventions, care pathways, payment methods, and delivery models.

Health data are ultimately derived from and relate to people and their health needs, as influenced by their individual, social, economic, and political circumstances within a complex healthcare system. The use of health data, including personal health information for secondary purposes, is allowable where there is public interest or potential public benefit from that use. While public interest and public benefit are not well defined, the intent is that the use of data should be supported for evaluating and improving services, identifying and addressing equity, and minimizing risks for individuals.⁴⁴

The current state of availability and accessibility for different purposes

The current state of the availability and accessibility of health data for different uses is tightly tied to the current state of data and who has access. Addressing the first two broad areas of challenges—improving health data and making sure relevant parties can get timely access to those data—will address this last area. As one example, improving the timeliness of access to data from electronic medical records, and increasing the availability to public and private sector partners, could increase the number and efficiency of clinical trials.⁴⁵ Better access to more detailed demographic data can be used to identify and address systemic issues of racism and other forms of discrimination in health and public health systems.⁴⁴

Conclusion: Moving From Where We Are to Where We Want to Be

Principle 6 of the Pan-Canadian Health Data Charter offers a tangible and achievable vision for health data. Considering the three dimensions of what the principle envisions, for whom, and for what purpose suggests that while we have a foundation on which to build, we are some distance from the ideal.

In order to close the gap between the current state and Principle 6, several important changes are necessary. The changes can be framed as recommendations to health system planners and those involved in data collection and stewardship:

1. Collect and make accessible in a meaningful manner all of the data that are needed to create a person-centred data system in alignment with Charter Principle 1. Some important data are not collected, most importantly because the current focus is on publicly funded health care and public health services rather than aiming for comprehensive data relevant to people receiving and providing care.

2. Make sustainable investment in an interoperable, modular infrastructure and the personnel essential for managing and sharing health data. There must be a commitment to ensuring the data are cleaned, curated and ready for a range of uses, including for use across provinces and territories.

3. Improve transparency, clarity and compatibility of data access processes. Data are not currently available in a timely or dependable way. There are important interests that do not have clear pathways for access to data or information derived from data. This situation hinders or blocks many important data uses, harming individuals and perpetuating systemic inefficiencies.

4. Modernize data stewardship to include all interests in oversight and decision-making about acceptable data use. This is necessary to meet the commitments to person-centred data design, UNDRIP, distinctions-based data sovereignty, and inclusion of diverse interests in data design and oversight. Expanding stewardship in this way would meet the objective of Principle 2, acknowledge potential conflicts of interest, and explicitly broaden access decision-making beyond governments.

There are promising initiatives that can help move us closer to the ideals of Principle 6. The data stewardship initiative led by CIHI is an important piece of this, though it is still unclear what pace that initiative will take and how consistent the approach to this work will be across the country. Ongoing development by the European Union of Health Data Access Bodies that are a design feature of the European Health Data Space can provide inspiration; working across countries of the EU has some similarities to working across Canada. Consistency, commitment, and inclusion of the broad range of interests in health data are all essential ingredients for addressing the most important aspects of ensuring timely accessibility and availability of data.

Footnotes

ORCID iDs

Kimberlyn M. McGrail

David L. Buckeridge

Ethical Approval

Institutional review board approval was not required.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of conflicting interests

The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Neither KM nor DB has any conflicts to declare.

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