Published by the Alberta Virtual Care Coordinating Body, the “Data Disarray” report underscores that improving healthcare in Canada requires a collaborative, integrated approach to health data management. While many assume that health data is well-structured and available across their healthcare team, the report highlights how fragmented health data policies and systems hinder the quality of care, resulting in inefficiencies and harm to patients.
Advancements in digital technology have made improved, even revolutionary, data sharing possible, but regulations and practices in healthcare have failed to keep pace.
Neglect, or a lack of intentional management, is named as the cause of the poor data situation in Canada.
There is a reference to a 2023 report that identified the barrier to establishing robust data-sharing infrastructure as political and cultural rather than technical.
The Data disarray report highlights explicit areas for improvement that can support data availability and better structure the healthcare system around optimal care delivery.
Key points include:
Collaboration Across Jurisdictions:
- Canada’s healthcare system suffers from inconsistent data policies across federal, provincial, and territorial levels. Without a unified, cooperative framework, sharing critical patient data becomes challenging, impacting care continuity and patient safety. The report advocates for a harmonized approach where all stakeholders—governments, healthcare providers, and communities—work together to ensure data flows seamlessly across borders to support better care.
Reducing Health Data-Related Harm:
- Fragmented data systems create risks, such as missed information and reduced access to necessary data across providers, leading to preventable patient harm. The report’s recommendation for interoperability and data accessibility aims to ensure that providers have the information they need to deliver the best care possible. This approach emphasizes that healthcare improves when data is shared responsibly and collaboratively.
Unified Health Data Governance:
- The current custodial model of health data ownership creates silos that restrict data use for the broader health good. The report calls for a shift towards stewardship, emphasizing shared responsibility and accountability for data quality and accessibility. By working together under a unified governance model, Canada can create a health data ecosystem that serves all patients more effectively.
Embracing Data Literacy and Accountability:
- To manage and use health data responsibly, healthcare professionals and policymakers need a shared foundation of data literacy. The report highlights the need for training and standards, so everyone handling health data—whether at the front lines of care or in policy—has the skills to collaborate effectively and protect patient well-being.
Prioritizing Indigenous Data Sovereignty:
- Indigenous communities must have control over their health data. By respecting Indigenous data sovereignty and involving these communities in decision-making, Canada can create a more inclusive and equitable healthcare system. This aligns with the concept that healthcare improves when all voices are heard and respected.
Fostering Collaborative Accountability:
- In team-based care, all providers share responsibility for a patient’s health journey. The report advocates for a shift to a structure in which data is collectively managed to benefit patients rather than being siloed by individual providers or institutions. This approach means that clinics and healthcare providers would work under a shared governance framework, ensuring everyone has access to the necessary data while protecting patient privacy and integrity.
Supporting Multidisciplinary Teams with Standardized Data Access:
- Team-based care often involves a mix of professionals—physicians, nurses, social workers, and mental health providers—each with different data needs. The report underscores the need for consistent, standardized health data policies that would allow all team members to access relevant information while adhering to privacy regulations. Standardization would simplify data-sharing practices within and across clinics, reducing administrative burdens and enhancing efficiency in team-based care.
Recommendations:
- The report calls for a reimagined approach to health data governance that emphasizes data interoperability, patient-centered data architecture, and harmonized public policies across Canada. It also recommends integrating Indigenous data sovereignty principles and establishing robust standards for health data technology and literacy.
What does the Data Disarray report mean for healthcare?
The report reinforces that “Healthcare gets better when we all work together.” A cooperative, patient-centered approach to health data can enhance the quality, safety, and accessibility of healthcare in Canada, ensuring that no patient falls through the cracks due to data silos or mismanagement. By building a health data system based on collaboration and shared accountability, Canada can create a stronger, more responsive healthcare system for everyone.
Read the full Data Disarray report here.