Control in health data is key: “It’s about knowing and limiting who can access it,” says RISE researcher

The rapid development of AI has forced every sector to accelerate its digitalization strategies. The stakes are even higher in healthcare, where sensitive data and security concerns put additional pressure on governments and the CTOs, CIOs and IT teams responsible for safeguarding records.  

From systems to applications and the integrations and automations orchestrated behind the scenes, everything needs to be built and maintained seamlessly and compliant with regulations.

How the data is exchanged across systems, stakeholders and regions plays a central role. Another critical aspect, particularly in the face of geopolitical instability, is where this information is stored and processed.  

When it comes to health data, the researcher Claus Popp Larsen, Head of Connected Cities at the Research Institutes of Sweden (RISE), is straightforward: it all revolves around control.  

“It’s about knowing and limiting who can access it under which conditions, and it has to be very secure. It can be limited within Sweden, for instance, or the EU, the US. It depends on the requirements,” he says.

The researcher was one of the experts on the “Smart Cities” panel during Dagens Industri’s Proptech 2025, an event sponsored by Frends iPaaS in Stockholm. 

Urgent action is needed 

The World Health Organization highlighted the importance of health data governance in the policy brief “Health data governance in the age of artificial intelligence”, published earlier this year. The document recommended four urgent actions targeted at policymakers where data security and governance were front and center: 

1. Further strengthen national health data governance to improve the quality of care, support AI adoption and garner public trust. Improve governance mechanisms to guide investment in secure digital health infrastructure, enhance data quality and establish legal and ethical guardrails for health data use

2. Develop a robust ecosystem of health data standards to facilitate the interoperability and exchange of data. Develop the national ecosystem for health data interoperability in support of standards adoption for primary and secondary health data exchange and use

3. Develop mechanisms or institutional arrangements to coordinate different national data providers. Establish mechanisms for the coordination of different data providers across the country to facilitate the collection, management and dissemination of consistent and complete data necessary for policy decision-making

4. Involve patients, healthcare providers and other key stakeholders in the development and implementation of health data governance frameworks. Engage stakeholders in policy design and build trust through inclusive governance processes that involve patients, health-care providers and other key stakeholders in the development of data governance frameworks supporting the implementation of trustworthy AI in health 

The topic has been making headlines across the globe. In November 2023, the NHS came under fire in the UK when it handed “the US spy tech company Palantir a £330m contract to create a huge new data platform”. The move sparked concerns among citizens and public debate which questioned whether the country was “handing our health data to Big Brother?”. 

A framework that supports patients, health professionals and research 

The researcher Claus Popp Larsen points out the new European Health Data Space Regulation (EHDS), which entered into force on March 26, 2025, as a very good example of frameworks for safeguarding sensitive data. 

"Compared to today’s situation, EHDS will offer various benefits. When I go to a new physician, for example, she should be able to access all my various medical records, so I don’t have to start from scratch with answering questions and being tested again. Or if I get a digital prescription in one EU country, I should be able to pick up my medication in any other EU country,” says Popp Larsen. He continues: "Patient data will be available to researchers on a much higher scale than today – of course with strict confidentiality."

"This will be a huge step forward in training AI models to develop better and more precise treatments"
— Claus Popp Larsen
Head of Connected Cities, RISE

According to the European Commission’s health bodies, secure and seamless access to health data across borders can positively impact patients, healthcare professionals, researchers, policymakers and industry players in the EU. Its benefits include: 

• Improved data exchange enables secure sharing of medical history supporting better diagnosis and treatment decisions 

• Reduces unnecessary duplicated medical tests, easing patient burden and cutting healthcare costs 

• Facilitates data-driven research and innovation, enhancing efficiency and affordability in medical advancements. 

With the right platforms and secure data flows, citizens, industry and academia can enjoy the benefits of more efficient and accurate healthcare based on the latest technological innovations.