Whose Data Is It, Anyway? How the MSSU Supports Ethical and Secure Health Data Access
Each year, Love Data Week invites us to reflect on the role of data in our lives. The 2025 theme, “Whose Data Is It, Anyway?”, challenges us to consider the complex relationship between those who collect data and those who use it. From researchers to government agencies, companies, and organizations, different groups manage data in various ways—but who really owns it? And more importantly, how do we ensure it is used responsibly?
At the Maritime SPOR SUPPORT Unit (MSSU), we work closely with provincial data centres to facilitate secure and responsible access to health data for researchers. Our data analysts and research support staff help navigate the challenges of data access while prioritizing:
- Privacy & Security: Ensuring data is handled in compliance with ethical and legal guidelines.
- Transparency: Supporting open conversations about how data is used in research.
- Patient Engagement: Promoting patient and public involvement in decisions about health data use.
Learn more accessing data at New Brunswick Institute for Research, Data and Training (NB-IRDT) and Health Data Nova Scotia (HDNS).
By bridging the gap between researchers and data holders, MSSU plays a key role in making sure data is not only accessible but also used in ways that benefit patients and communities.
Understanding Data Ownership in Health Research
Health data is collected from multiple sources—electronic health records, administrative databases, surveys, and even wearable technology. But ownership is not always straightforward. In many cases:
- Patients and the public are the source of health data, yet they may have limited control over how it is used.
- Healthcare institutions and governments collect and manage large datasets to inform policy and improve services.
- Researchers rely on access to high-quality data to generate new insights and drive improvements in patient care.
This complexity underscores the importance of ethical data governance, transparency, and public trust.
The Role of Patients and the Public
Patient-oriented research recognizes that data should not just be about people—it should involve them. Engaging patient partners in research helps ensure that data is used in ways that reflect real-world needs and concerns. It also fosters greater trust in how data is shared and interpreted.
Brian Cho, an MSSU Patient/Public Partner and member of the MSSU Data Platforms and Services Working Group, shares his perspective:
“I think that the collection and analysis of health data can be used to improve the health outcomes of the public; I also believe that improvement should strive to be equitable, and the most vulnerable groups should not be left behind as health data use becomes more ubiquitous. Engaging patient partners is a great way to add a patient perspective into the research process. I think patients may feel separated from the research that could affect them directly, and involving patient partners might give some novel perspective or point of view that could help design a more inclusive process or study cohort.”
This Love Data Week, we encourage everyone to think critically about data ownership and to advocate for ethical and inclusive approaches to research.
