Discussions on health data sharing reflect multiple perspectives, interests, and even biases. These tensions need to be acknowledged while policy makers and citizens search for potential compromise solutions that can be implemented in the short- and medium-term.
The relevance of this topic is emphasised in Priority 1 of the European Commission’s Communication on the Digital Transformation of Health Care in the Digital Single Market, COM(2018)233: “Citizens’ secure access to and sharing of health data”.
At the cornerstone of discussions on citizen-controlled data sharing, there is an urgent need to improve the testing of new data sharing governance models, the amount of data being shared, and citizens’ awareness – and ultimately their trust – in data sharing.
The DigitalHealthEurope project is investigating the topic of citizen-controlled health data sharing using a wide range of methods. These include extensive desk research, interviews with experts as well as a large-scale consultation with citizens. The resulting findings have been discussed in numerous events and are summarised in the Consultation Paper on “Citizen-controlled health data sharing governance”.
Overall, there is a need to develop more person-centred solutions for data sharing and mechanisms for data-control for citizens. These are important issues for shaping the future success of the proposed European Health Data Space.
The paper provides recommendations for further discussion in upcoming DigitalHealthEurope roundtables and stakeholder validation events.