How can European citizens be given union-wide, secure access to their health data? And how can Member States collaborate on the secure and authorised access to national genome databases?

At the recent European Data Summit in Berlin, organised by the Konrad-Adenauer-Foundation, a breakfast session supported by HIMSS Europe saw experts tackle these issues, with Marco Marsella, Head of the eHealth, Well-Being, and Ageing Unit from the European Commission, presenting their plans to support Member States in enabling cross-border health data exchange and facilitating the secondary use of patient data for research purposes in the field of genomics. Marsella said there was no need for new standards, arguing that the focus now had to shift to adopting existing standards to facilitate cross border eHealth.

The European Commission already supports a variety of initiatives in these areas, including the European Reference Networks for Rare Diseases or pilot projects to exchange patient summaries and e-prescriptions across national borders.

“Most of the EU Member States and governments seem to be willing to support these initiatives; but some are more successful than others to promote health information exchange across the care continuum and to enable their citizens to access their health records”, said Jörg Studzinski, Director Research and Advisory Services at HIMSS Analytics, who participated in the meeting.

“It will be important to create more agile, effective and efficient governing structures and legal frameworks to provide the necessary push in this area – in particular within Germany."

Germany aims for national EHRs by 2021

Niklas Kramer, from the German Federal Ministry of Health, admitted that Germany has not been very successful in digitising its health services. The current government, however, has outlined an eHealth strategy aimed at adopting the country’s Health Telematics Infrastructure for information exchange and introducing nationwide electronic health records by 2021.

But the complexity of the project, looking at the accessibility, sharing, and use of health data, was highlighted by the panel. The German research community, for instance, is getting increasingly frustrated over the legislative barriers regarding the use of big data, at a time their peers in other countries are making significant scientific progress in this field.

“eHealth policy should be key part of the eGovernment modernization efforts and Germany should follow the Estonian and Nordic approach when it comes to free flow of data, research and health treatment. As for the European Genomics Declaration, it would be great to see Germany joining forces with other Member States to link genomic databases across borders”, said Dr Pencho Kuzev, Data and Digital Policy Coordinator at the Konrad-Adenauer-Foundation.

“There is a clear commitment and guidance from the European Commission to facilitate a multi-stakeholder approach to make cross border healthcare a reality and overcome the current technical gaps and challenges when it comes to exchanging data”, added Anett Molnar, Senior Manager, Public Policy and Engagement at HIMSS Europe.

“HIMSS and HIMSS Analytics are prepared to support the European Commission and Member States through opinion exchange, workshops and research initiatives and jointly further the mission to transform healthcare through the use of information and technology.”