Article by Cindy Hansen: “This recent scholarly work, “Towards a Set of Universal Data Principles” by Steve MacFeely et al (2025), delves comprehensively into the expansive landscape of data management and governance. It is noteworthy to acknowledge the intricate processes through which humans collect, manage, and disseminate vast quantities of data. …To truly democratize digital mental healthcare, it’s crucial to empower individuals in their data journey. By focusing on Digital Self-Determination, people can participate in a transformative shift where control over personal data becomes a fundamental right, aligning with the proposed universal data principles. One can envision a world where mental health data, collected and used responsibly, contributes not only to personal well-being but also to the greater public good, echoing the need for data governance to serve society at large.
This concept of digital self-determination empowers individuals by ensuring they have the autonomy to decide who accesses their mental health data and how it’s utilized. Such empowerment is especially significant in the context of mental health, where data sensitivity is high, and privacy is paramount. Giving people the confidence to manage their data fosters trust and encourages them to engage more openly with digital health services, promoting a culture of trust which is a core element of the proposed data governance frameworks.
Holistic Research Canada’s Outcome Monitoring System honors this ethos, allowing individuals to control how their data is accessed, shared, and used while maintaining engagement with healthcare providers. With this system, people can actively participate in their mental health decisions, supported by data that offers transparency about their progress and prognoses, which is crucial in realizing the potential of data to serve both individual and broader societal interests.
Furthermore, this tool provides actionable insights into mental health journeys, promoting evidence-based practices, enhancing transparency, and ensuring that individuals’ rights are safeguarded throughout. These principles are vital to transforming individuals from passive subjects into active stewards of their data, consistent with the proposed principles of safeguarding data quality, integrity, and security…(More)”.