There are numerous challenges to accessing and using data for multi-regional analyses. Health researchers in Canada often opt for using data from a single region or jurisdiction for their studies, which misses the potential of leveraging data assets that, when used together, would offer multi-regional population-wide health perspectives and findings. A key strategic goal for HDRN Canada is to enhance data access processes by providing insights into available data, streamlining the delivery of data, and facilitating access to trusted research environments for distributed analyses.
We are committed to expanding available health data, particularly those that can be linked to foundational population-based data holdings in our Member Organizations. Data that come from different places are often collected to represent similar services or experiences – for example, data about visits with physicians – but are different in how they are collected. Data may also vary in what they include (e.g., because of policies about who is eligible for a service) and what they exclude (e.g., missing meaningful information such as race or gender identity).
No single organization has all the data nor can a single organization or network solve all the legal, policy, ethical and technological challenges associated with data access. That’s why HDRN Canada will establish and strengthen partnerships that align work toward a collective vision. We will also provide leadership in understanding and responding to data-related opportunities, capabilities and interests as they continue to evolve.
Advancing equity, as well as human and Indigenous-specific rights, means creating data structures aligned with the principles of IDEA as well as Indigenous data sovereignty rights. This will create opportunities for innovation and change that can address existing inequalities in health. Promoting reconciliation with Indigenous Peoples and Indigenous-led approaches to Indigenous data sovereignty are important priorities, including supporting Indigenous-led data initiatives that advance the unique and inherent rights of Indigenous nations.
Everything we do as a network is to benefit people in Canada through data use that leads to better health outcomes, greater health equity and more robust health systems. The public must play an essential role in informing the work we do and HDRN Canada will strive to increase community and public influence on data systems.
Our shared purpose and principled approach to work are key ingredients for a cohesive network. Our collective scientific knowledge and expertise are critical for advancing multi-regional data practices and data use. To achieve our shared vision and objectives, we will need to operate effectively and with a commitment to sustainability.
While we aim to shape the evolving data ecosystem, the existing system also shapes and constrains our activities. Our effectiveness will depend on an environment that is supportive of our role in it.