Supporting health information systems: The European perspective

Health information systems play a crucial role in responding to population health and health systems’ challenges both at national and European level. The COVID-19 pandemic has been instrumental to show the utility and the conditio sine qua none of health information systems for health research, health care and policy development. National and the current EU health information system are connected with each other. The EU health information system feeds on data and information that is generated by the national health information systems. Within the current political set-up of the EU, strong national health information systems are essential for a functional EU health information system.

The competency of the EU in health information is limited, but investments have been made to support health information activities through EU projects and initiatives to set up an EU health information system. Despite these investments, the current EU health information system remains fragmented with substantial inequalities across Europe with issues of timeliness and usefulness.

This thesis aims to investigate national health information systems and the current EU health information system, and how these systems can be strengthened through a common approach.

The thesis is divided in three parts, responding to the following three main questions:

What is the current status of national health information systems and which elements of the current EU health information system exist?

What can European collaboration offer to health information and health information systems?

How can collaboration in health information in the EU be structurally improved?

Chapters two and three focus on the first question: what is the current status of national health information systems and which elements of the current EU health information system exist? Chapter two describes the factors that enable and hamper the functioning of national population-based health information systems in Europe. The study reveales that each national health information system has its strengths and weaknesses. Five main barriers are identified across all areas of national health information systems. Common barriers and enablers in national health information systems across Europe provide evidence that a common European strategy and approach to strengthen national health information systems is needed. Within the current political set-up of the EU, strong national health information systems are essential for a functional EU health information system.

Chapter three describes the needs to strengthen the current EU health information system. The competency of the EU in health information is limited, but investments have been made to support health information activities through EU projects and initiatives to set up an EU health information system. This chapter shows that despite these investments, the current EU health information system remains highly fragmented and lacks sustainability, coherence, and comprehensiveness.

The second part of this thesis focuses on what European collaboration can offer to health information and health information systems through several concrete examples of collaborations in EU-projects. It provides two examples of what European collaboration can offer to health information and health information systems. In chapter four, Healthy Life Years (HLY), a disability-free life expectancy metric, and its underlying measure the Global Activity Limitation Indicator (GALI) are examined. Chapter five and six describe the added value of a peer administered health information system assessment methodology based on a WHO assessment tool and adapted by the Joint Action on Health Information (InfAct). A health information system assessment is an evaluation of the functioning of the main elements that compose a national health information system. The study showed the relative easy to implement and use the developed peer administered health information system assessment methodology across Europe. Chapters four, five and six demonstrate that European collaboration leads to structured build-up of knowledge and strengthening of expertise. European collaboration supports the creation of a health information community within and across countries. Moreover, the collaboration thoroughly contributes to capacity building and therefore also likely addresses health information inequalities. This provides evidence that there is a clear added value of having a European common approach to strengthen health information systems.

The third part of this thesis describes how collaboration in health information in the EU can be structurally improved, considering the gaps identified in Part 1. Chapter seven describes the potential of a European Research Infrastructure Consortium on Health Information for Research and Evidence based Policy or later defined as the Distributed Infrastructure on Population Health to address current challenges of the EU health information system. Results show that a research infrastructure is a suitable tool to support the goal of working towards more and better coordination in activities related to health information in the EU. It discusses its functions and way of operating. A research infrastructure provides a bottom-up approach where Member States and associated countries have a pragmatic solution for an EU infrastructure for health information. This provides evidence that a European common approach to strengthen health information systems can be given by a research infrastructure.

Based on the main findings of the thesis, professional experience by working in the field as coordinator in several EU projects and by bringing in the current evolutions in the field, in chapter eight a selection is made of what is identified to be the most pressing actions that need to be taken, where the biggest gains can be made and what implications these have for practice, policy and research. Four main area of action are fragmentation, governance aspects, human resources and European financing mechanism.

Fragmentation concerns the fragmentation of data sources in the national health information systems and EU health information system. It is recommended to set-up a central coordination body in each country to streamline health data management, access and (re)-use. Three major roles need to be executed by these bodies: (i) centralised development of metadata catalogues, (ii) provision of streamlined and transparent data access procedures, and (iii) support during data request procedures. Also the set-up of a European metadata catalogue is recommended which can built on the European Health Information Portal developed by InfAct and the Population Health Information Research Infrastructure.

The second area of action is regarding overarching, political governance of health information systems in European countries. It is recommended to set-up health information system coordination mechanisms at national and European level through National Nodes, Domain specific (Research) Nodes and by bringing these together. This addresses better organisation of health information activities and support for stronger health information strategies.

The third area of action is human resources. Given the current state-of-the-art health information systems, specific skill sets are needed to support health information systems. These are believed to be common across Europe and are recommended to be addressed through a peer-to-peer common European approach. This approach entailed joint trainings across domains, mandatory capacity building in EU projects, and increasing the visibility of existing trainings.

The fourth area of action is European financing mechanism. This last area covers sustainability and considers how investments in health information systems need to change to have a long-term approach. This thesis recommends to redesign the European Health Programme funding mechanism. In addition, a better alignment between the European Commissions’ funding schemes and closer collaboration with international organisations is recommended.

Finally, this thesis recommends the deployment of the Distributed Infrastructure on Population Health to support, through a European common approach, the strengthening of national health information systems and the current EU health information system. It also supports the developments of the European Health Data Space which provides an important framework for the future developments of national health information systems and the EU health information system.