Impact: Secure access to health data for research purposes

In the coming weeks the nominees for the Ben Feringa Impact Award 2024 will introduce themselves and their impactful research or project. This week: Anastasija Spajic, nominee in the category 'student' for her internship research around the Dutch Health Data Access Body (HDAB-NL), an organization yet to be developed as required by the European Health Data Spaces (EHDS).

Who are you?

My name is Anastasija Spajic and I was born and raised in Switzerland but my parents come from Serbia and Montenegro. After finishing my Bachelor studies in International Relations in Geneva, I moved to Groningen for the Master’s programme LLM Public Administration in Governance and Law in Digital Society. Currently I work as an academic associate for the Swiss Foreign Affairs Ministry in Brussels, Belgium.

At which faculty do you study?

I did my Master studies at the Faculty of Law.  

What is your research about?

I had the great opportunity to write the thesis at the Central Bureau of Statistics (CBS) as part of my internship. The research focused on the Dutch Health Data Access Body (HDAB-NL), an organization yet to be developed as required by the European Health Data Space (EHDS) Proposal, that aims at ensuring secure access to health data for research purposes. In the study, I analysed potential legislative frameworks suitable for establishing the secure processing environment of the HDAB-NL. I paid special attention to the pharmaceutical industry as a pertinent player within the healthcare sector as its role as a health data user might bring along additional challenges. To adequately assess the possible legislative frameworks, I developed in a first step an evaluative framework using good governance principles.

What is the impact of your research and how could it help society?

The thesis offers the CBS and the Dutch Ministry of Health, Welfare and Sports important insights into the legal (im)possibilities and (potential) consequences when embedding the EHDS in the Netherlands. By providing clear recommendations on the legislative frameworks to be potentially used, it therefore helps the parties involved with the concrete implementation of the HDAB-NL. Next to offering a clear insight into the legal complexity (statistical law, data protection law, EHDS Proposal etc.) when it comes to granting access to health data for research purposes – both on EU and Dutch level-, the research also raises awareness regarding the introduction of data spaces as envisaged by the European Union.

Equally relevant, the established good governance framework could be used to assess the many existing (and emerging) legislative frameworks that could govern the reuse of health data for research purposes within the HDAB as it is tailor-made and entails explicit measures that must be taken when granting access to health data. In sum, the work grants decision-makers concrete recommendations on how to further proceed in order to adequately protect health data of individuals while simultaneously allowing its secure reuse so that society can benefit from medical advancement and innovation.

What is your motivation for the research? What has it taught you?

I personally did not know much regarding the reuse of health data. However, this is a topic that concerns us all given that health data is particularly sensitive information which requires firm data protection measures but which can yield to important medical advancement when used in research. Having both data protection rules and regulations allowing the reuse of health data (such as by the pharma industry) in place, was something I was very motivated to analyse.

Working on the research project provided me with a deep understanding of public policy formulation and the role of multiple stakeholders, particularly private parties, when developing them. It furthermore shed light on the critical role of good governance in realizing ethical policy outcomes and societal goals, a key emphasis within governments.

Visit the overview page for more information on the other five nominees.