Europeans want transparency and oversight to share their digital health data

Digital health data are collected in health care, research and public health domains. These data are assets for public health authorities, health care systems, academic researchers and actors in the private sector. Cross-border data-sharing is facilitated by European legislation, but there are still some gaps in mapping citizen’s views. A recent preference study shows how more than 5,000 residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) weigh different aspects of digital health data sharing against each other.

The study aims to understand how the European public balance different aspects of digital health data sharing in different contexts. The survey was designed as a Discrete Choice Experiment, which allows researchers to capture how people weigh different aspects, or attributes, against each other. According to the authors, the results can inform both policy directions and harmonisation initiatives.

The results highlight the importance, for people, of information on digital data sharing and data sharing review processes, suggesting that people care about transparency and oversight. According to the authors, rthere is more acceptance for sharing health data with national authorities and academic research projects than commercial actors. People also prefer to be informed and asked to give their consent to the use of their data.

The results also point to the need for review processes for both transferring and using data. There was much less acceptance for actors in the private sector, and reluctance to share data with companies. However, there were also differences between how people from different regions, and within different regions, view data sharing. The study provides empirical evidence that can help inform current discussions on governance for data sharing and harmonization initiatives in Europe, for example the European Health Data Space.

According to the authors, the results call for flexible governance approaches that can meet individual needs, across different countries, and suggest that interactive dynamic informed consent models with integrated oversight mechanisms could be a way forward for developing tailored governance approaches. These approaches should allow individuals to express their preferences and take as much control as they want over how their data is shared in different contexts.

Want to know more? The paper is available in full here:

Biasiotto R, Viberg Johansson J, Alemu MB, Romano V, Bentzen HB, Kaye J, Ancillotti M, Blom JMC, Chassang G, Hallinan D, Jónsdóttir GA, Monasterio Astobiza A, Rial-Sebbag E, Rodríguez-Arias D, Shah N, Skovgaard L, Staunton C, Tschigg K, Veldwijk J, Mascalzoni D, Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries,  J Med Internet Res 2023;25:e47066, doi: 10.2196/47066

By Josepine Fernow