European Patient Summary project

30 June 2016
With quite a long history, CEN/TC 251 was awarded a contract from the European Commission to participate in the global development of an International Patient Summary specification and to turn that global specification into a European Patient Summary standard (EN) and the accompanying implementation specification (TS).

The history of this initiative dates back to the epSOS Workshop – “Building a Sustainable Cross-Border Environment” in Athens in 2011. During that workshop we discussed the possibility to take the epSOS specifications and turn them into something that was endorsed not only by the project partners within epSOS, but by the wider community of standards developers and profilers within Europe. Another impulse was given by the US Office of the National Coordinator for eHealth (ONC) initiative, at the time of the Trillium Bridge project, to launch an INTERPAS project within HL7 International.

This project was to deliver a whitepaper, outlining the commonalities and differences between the European epSOS specifications and the US Meaningful Use specifications for patient summaries. It did so on the basis of joint work carried out with the Trillium Bridge project. Next, the INTERPAS project was to deliver a common global specification for a Clinical Document Architecture (CDA) rendition of the international patient summary (hence INTERPAS), together with ISO/TC 215 and other global stakeholders.

Somehow the INTERPAS project lost momentum, but the recommendations from the Trillium Bridge project were crystal clear: in order to provide a focused way forward for EU/US collaboration with a global impact, the international patient summary specifications needed to be developed by a consortium of standards development organizations. In its April 2015 meeting, the Joint Initiative Council on Global Health Informatics Standardization (JIC) adopted the San Francisco declaration, which in turn led to the start of an initiative to put together a Standards Set for the International Patient Summary, bringing together the best from all JIC members as implementation advice for a global interoperable patient summary.

On both sides of the EU/US collaboration, the need was felt to revive the activities leading to a common global specification for an international patient summary. This was triggered in part by the JIC Standards Set activity, but also by the revision of the Guidelines on the Patient Summary Dataset and the work on interoperability and standards within the Joint Action supporting the eHealth Network (JAseHN). Together we finalized the contract for the European contribution to the International Patient Summary. During the joint CEN/TC 251 and ISO/TC 215 meeting in Amsterdam we discussed the different initiatives and how the contract with the European Commission would support this. This diagram is taken from that presentation.

The importance of a European Patient Summary standard extends well beyond the cross-border information exchange as specified in the Guidelines adopted by the eHealth Network. The cross-border information exchange will be handled through the eHealth Digital Services Infrastructure which is currently being set up with funding from the Connecting Europe Facility. The specifications are based on an elaboration of the epSOS specifications. However, in order for such exchange to be semantically interoperable and multilingual at the same time, local implementations in countries and regions need to be able to adhere to further localizations of and constraints on the global and European patient summary specifications. In order to be able to mandate adherence to such specifications when buying and implementing new electronic health record systems, it helps to have a well-defined and accessible global and European standard and accompanying implementation specifications.

Adoption of such a standard will take place only when it addresses a concrete problem and provides easily implementable solutions. To this end a wide group of stakeholders across Europe and within countries will be consulted as part of the standards development process. The project will not be able to do this by itself. We will work together closely with HL7 and IHE at a global, European and local level, through direct participation in the project team and through engagement of the constituencies of these organizations as participants in the European eHealth SDO Platform (eSP) that is being formed. Also through this eSP, we will reach out to the National Competency Centres for eHealth, most of which are already represented in JAseHN and have strong ties to the National Contact Points for eHealth that will implement the solutions necessary to deliver the eHealth Digital Services Infrastructure.

+31(0)15 2 690 313