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Digital health: a democratic right to control our own data

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The Bertelsmann Foundation’s Digital Health Index recently ranked Estonia as the leading country in digital health for 2024. For a small nation, this is no small achievement. But the real story behind the ranking is not technology alone — it is the democratic values and cultural choices that shape how health data is accessed, protected, and used.

At the heart of Estonia’s e-health system lies a simple but powerful principle: every patient has the right to see who, when, and why someone has accessed their medical records. This transparency is not just a technical feature; it reflects a deeper privacy culture that differs from country to country. In some societies, health data is treated as an almost untouchable secret; in others, it is seen as a shared resource for improving public health. Estonia has chosen a middle ground, where individuals remain in control, but the system is designed to ensure that data can also serve the greater good.

This balance naturally raises questions. Should underage children be able to hide their sexual or mental health records from their parents? Can a person prevent doctors from seeing sensitive information, such as an HIV-positive status, even if it could endanger others? The answers to such questions are not universal; they depend on legal frameworks and cultural values. What matters is that we have the infrastructure to enforce these decisions transparently, and the democratic maturity to debate them openly.

Digitalisation has already proven its value in another area: healthcare costs. According to a recent report by the Foresight Centre, Estonia’s digital health solutions have decreased operational costs by more than half. Yet paradoxically, overall spending on healthcare is rising. Why? Mainly because people are using healthcare services more often. In many ways, this is a positive sign. As societies mature and the quality of life improves, citizens start caring more about their health, expecting better services and demanding access. This is not a symptom of crisis but of progress.

Still, challenges remain. Most healthcare expenses occur in the last year of life, especially in the previous month, and are often spent in hospitals. This reality forces us to rethink how we care for people at the end of life. Digital tools alone won’t solve this, but they can help us collect and analyse data to design more humane solutions through improved palliative care or diversifying support options for patients and families.

AI tools will add another layer of support to Estonia’s digital health ecosystem. Just like in education, AI is not here to replace doctors or nurses, but to assist them. By handling administrative tasks and supporting diagnosis, AI can free up medical staff to spend more time with patients — improving care while reducing burnout in a sector already stretched by staff shortages and demographic decline. And because Estonia has built a secure, interoperable digital health infrastructure, AI solutions can be piloted, measured, and scaled with relative ease, ensuring real impact across the system.

Ultimately, the story of digital health in Estonia is not just about cost savings or cutting-edge technology. It is about people. It is about giving individuals control over their most sensitive information, ensuring transparency in its use, and empowering society to make informed choices. It is about building a healthcare system that is democratic, humane, and future-ready.

Written by
Petra Holm
As a Digital Transformation Adviser at the e-Estonia Briefing Centre, Petra advocates for technology’s role in fostering more inclusive and equitable societies. She believes that when done right, digitalisation empowers individuals, builds trust and strengthens democracy.

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