The InfAct proposal for a sustainable European health information infrastructure on population health: the Distributed Infrastructure on Population Health (DIPoH)

Abstract

Background In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct’s proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct’s time span. Methods The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support.. The technical exploration (Technical Dialogues—TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. Results The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and wellbeing of populations as impacted by COVID-19. Conclusions The sustainability plan received wide support from Member States and was recognized to have an added value at EU level. Nevertheless, there were several aspects which still need to be considered for the near future such as: (i) a commitment of stable financial and political support by Member States (MSs), (ii) the availability of resources at regional, national and European level to deal with innovations, and (iii) a more direct involvement from EU and international institutions such as the European Centre for Disease Prevention and Control (ECDC), the World Health Organization (WHO) and the Organisation for Economic Cooperation and Development OECD for providing support and sustainable contributions.

European Health Information Portal: a one-stop shop for health information

“…The status of availability of health information, including health and healthcare service-related data, research networks 7 and projects, health reporting 13 and capacity-building activities 14 in Europe was reviewed. The review demonstrated severe and worrisome fragmentation of the information resulting in the recommendation to establish a European health information infrastructure 15 where the HIP would be one of the key pillars provided to strengthen evidence-informed policymaking and research. Other pillars were training and capacity building and direct exchange of expertise and good practices.…”

Developing and testing a protocol using a common data model for federated collection and analysis of national perinatal health indicators in Europe

“…The PHIRI project brings together 41 partners in 30 different countries with the aim of sharing data and expertise on the COVID-19 pandemic through a health Information portal on population health and a broader goal of constructing sustainable and reactive health information systems in Europe and promoting their use for policy decisions 13 . A key component of the project is to conduct research to inform public health policies and management of the COVID-19 pandemic using a federated data model with four use cases, including one on perinatal health and perinatal health inequalities.…”

European Health Information Training Programme: a sustainable strategy for strengthening capacity in health information

“…2 Following the results of BRIDGE Health, the Joint Action on Health Information (JA InfAct) identified the necessity to create a new Distributed Research Infrastructure on Population Health and a comprehensive training program for scientific and administrative staff to improve the availability of comparable, robust and policy-relevant data, and information on health system performance. 3 Continuing to boost these recommendations, the ‘Population Health Information Research Infrastructure’ (PHIRI) was developed to facilitate and generate the best available evidence for research on the health and well-being of populations impacted by COVID-19. 4 , 5 PHIRI involves national public health institutes, research centres, universities, and ministries of health, fostering collaboration between different perspectives and expertise.…”