Podcast 🎧 & blog: Caring with data in a healthy digital society

Written by Federico Plantera

It’s easy, almost natural perhaps, to think of measuring digital transformation by means of speed, scale, and efficiency. But when our gaze shifts to wider, long-term prosperity, our attention should be centred also on care – the one we give, and that we offer through systems built to support human wellbeing.  

This year’s e-Governance Conference allowed us to explore many stories of technology used for public good. We do so in this podcast episode with Dr. Lili Milani, Head of the Estonian Biobank and Professor of Pharmacogenomics at the University of Tartu, and how Estonia’s national biobank has become a trusted platform where science, ethics, and personal agency meet. 

The Estonian Biobank began as a research initiative focused on the genetics of disease, but over time, its purpose has deepened and broadened. “The original goal was to understand how genes relate to diseases so we could improve care,” Milani explains. As more participants joined and the scope of available data expanded, the Biobank grew into a national tool for real, tangible benefits to people’s personal lives. 

Bringing Data to Life for Better Health 

The Estonian Biobank is a living system. It grows and adapts with each new update from health records, surveys, and biological samples. More than 212,000 people, around 20% of the country’s adults, have chosen to take part. This high level of participation reflects trust in institutions, but also a growing awareness of how data can play a role in protecting personal and public health. 

Through the MyGenome portal, participants can view their personal risk for conditions like heart disease and type 2 diabetes. “What makes it different is that users can adjust factors like their weight or smoking habits to see how their choices affect their future health. We want people to feel like they have control,” Milani explains. “It’s not just about genes, but how your daily life shapes your risk.” 

The shift from data collection to active participation has redefined the project’s role. “We realised we couldn’t just do the science and hope someone else would act on it,” she says with a smile. “We had to be part of that process.” And by taking on the challenge of translating research into usable tools, the Biobank is helping redefine the shared commitment and responsibility around health data. 

Trust and Care in Every Step 

Trust is the foundation of the Biobank. From the start, people have had control over what they share and what they want to receive. “Consent isn’t a one-time thing,” says Milani. “We built a system where people can change their mind or update their preferences at any point.” 

The team also made sure the public stayed involved. When the government set a target to double participation, the response came from real stories, not marketing. “People came because someone they knew had a positive experience,” Milani remembers. “That kind of trust just can’t be bought.” 

A strong legal framework helped too. Estonia’s Human Genes Research Act gave the project clear rules to follow. “It told people: your data is protected, and your rights matter, which gave us necessary and further credibility,” she adds. 

Solutions That Include Everyone 

Designing digital tools that support health also means thinking about who will use them. The MyGenome portal had to be clear and understandable for people from all backgrounds. “We spent a lot of time working on the language and visuals,” Milani says. “We wanted everyone to feel that the information was for them, not just for doctors or researchers.” 

The team included legal experts, developers, and health professionals. Because people often treat online health tools as serious advice, the portal had to meet strict standards. “That made us more thoughtful,” she explains. “We had to get it right.” 

Thanks to Estonia’s existing e-health systems, the Biobank could link its data with national health records. “Our digital systems made it possible to give something back that really helps people in their lives,” says Milani. 

Bytes into Health Benefits 

Could this approach work in other countries? Milani believes it can, but not without the right steps. “You need strong laws and ethical guidelines that are clear and fair,” she says. “But you also need to build trust by keeping your promises.” 

It’s not just about collecting data. People must feel that they are part of something meaningful. “If someone gives their information, they should get something valuable in return.” 

In Estonia, the impact is clear. People are getting earlier help for certain health risks, public health messages are more targeted, and more feel involved in how their country uses technology. “We didn’t do this just to innovate,” Milani says. “We did it to make life better.” 

She believes that as digital government grows, we should measure success not only by numbers or speed, but by how much people feel supported. “True prosperity means helping people live healthier, more confident lives.” And that’s what care-driven digital transformation, truly for the people, should strive for.