Why BRIDGE Health Task 8.2?

The year 2012 marked the end of a stream of projects in the area of Health Information, including the EUBIROD project. At that point, it was clear that the continuation of these activities would have been possible only through the construction of an overarching framework for public health monitoring in Europe.

Obviously, the projects could not be funded on a rolling basis. At the same time, all the efforts made to establish and run productive international collaborations needed to be duly exploited.

EU reflection process

A reflection process was started by the Council Conclusions on 10 December 2013, inviting the EU and Member States to “cooperate with a view to establishing a sustainable and integrated EU health information system... exploring in particular the creation of a European health information research infrastructure consortium as a tool”. These conclusions clearly assigned the task as the joint responsibility of the European Commission and Member States.

Consequently, DG-SANCO organized a series of meetings at EC premises, inviting representatives of EU-funded projects and Member States participating in the Expert Group on Health Information (EGHI) were invited to discuss the contents of a “Scoping Paper”, which was finally publicly delivered in 2014.

The document illustrated the potential benefits of a European Research Infrastructure Consortium on Health Information (ERIC-HI) as a springboard for the realization of a coherent EU health information infrastructure (EU-HII). The primary aim of the ERIC-HI was to link individual researchers and networks in the area of public health and health systems through better information sharing and coordination.

Essential levels of Health Information

The technical complexity of the effort, even in consideration of the political and legislative barriers of the forthcoming General Data Protection Regulation (GDPR) were captured by F.Carinci in the paper on "Essential levels of health information in Europe: an action plan for a coherent and sustainable infrastructure", published in Health Policy in April 2015.

In this paper, it was highlighted that the "Scoping Document" should have been complemented by an operational plan to make all relevant networks active and interoperable. A scheme was provided to enable data transmission from federated networks using a minimum set of agreed aggregate data. i.e. the "essential levels" of health information.

It was also suggested that a collaborative Expert Group should have been formed to design and update the system continuously, using proper statistical and epidemiological methods. According to this vision, the ERIC might have represented the ideal tool to connect researchers and officers of a EU entity in charge of developing and maintaining the common EU portal.

The design of Task 8.2

The design of Task 8.2 reflected this vision, using population-based disease registers as a common basis for the definition of a sustainable approach, based on the BIRO experience.

We relied on the established EUBIROD network, to develop a very targeted and coherent plan across three main lines of intervention, within the heterogeneous context of the EU Bridge Health project:

  • Making the BIRO approach disease-agnostic, so that it could have been applied as a common platform for health information

  • Revising the BIRO software, by dropping down all redundant dependencies from different packages and using a modular approach. This would have allowed extending and customising software for different uses.

  • Updating the privacy assessment methodology, including principles underpinning the GDPR, ethical principles and the most recent recommendations on health data governance. A practical demonstration was planned on different networks involved in Bridge Health.

Results achieved

At the end of three years, as shown by the deliverables available here, we succeeded in building up a credible framework that made the BIRO approach widely available for general use.

In particular, we delivered the following:

  • Two international meetings with participants from the broader commmunity of disease registers in Europe, representatives of the OECD and experts from national privacy authorities

  • A theoretical framework for the design of national platforms and interoperability of population-based disease registers

  • Specialised software for the data collection and analysis of essential levels of health information (NeuBIRO)

  • Novel methodology of Privacy and Ethics Impact and Performance Assessment (PEIPA), successfully tested on field with different types of networks