Abstract
BackgroundNon-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. There is no infrastructure in Europe that could provide health information (HI) on Public Health monitoring and Health Systems Performance (HSP) for research and evidence-informed decision-making. Moreover, there was no EU and European Economic Area Member States (EU/EEA MSs) general consensus, on developing this initiative and guarantee its sustainability. The aim of this study is to analyze the integration of technical and political views made by the Joint Action on Health Information (InfAct; Information for Action) and the results obtained from those activities, in terms of advice and national and institutional support to develop an integrated and sustainable European Distributed Infrastructure on Population Health (DIPoH) for research and evidence-informed policy-making.MethodsInfAct established two main boards, the Technical Dialogues (TDs) and the Assembly of Members (AoM), to provide a platform for discussion with EU/EEA MSs to establish a sustainable infrastructure for HI: 1) The TDs were composed by national technical experts (NTE) with the aim to discuss and provide feedback about scientific aspects, feasibility and EU-added value of the infrastructure proposed by InfAct. 2) The AoM gathered country representatives from Ministries of Health and Research at the highest political level, with the aim of providing policy-oriented advice for the future political acceptance, support, implementation, and development of InfAct’s outcomes including DIPoH.The documentation provided for the meetings consisted in Fact-Sheets, where the main results, new methods and proposals were clearly exposed for discussion and assessment; altogether with more extended information of the DIPoH. The documentation was provided to national representatives within one more before each TD and AoM meeting.The Agenda and methodological approaches for each TD and AoM meeting consisted in the presentations of the InfAct outcomes extending the information provided in the Fact-Sheets; followed by a non-structured interaction, exchange of information, discussion and suggestions by the MSs representatives.The outcomes of the non-structured discussions were collected in Minutes of the TD and AoM meetings, and the final version was obtained with the consensus of all participants. Additionally, structured letters of political support were provided to the AoM representatives, for them to consider providing their MS written support for DIPoH.ResultsNTE, within the TDs, considered that DIPoH was useful for technical mutual learning and cooperation among and within countries; although they considered that the technical feasibility to uptake InfAct deliverables at the national and EU level was complex. The AoM focused on political support, resources, and expected MSs returns. The AoM representatives agreed in the interest of setting up an integrated and sustainable HI infrastructure and they considered DIPoH to be well-articulated and defined; although, some of them, expressed some barriers for providing DIPoH political support. The AoM representatives stated that the AoM is the most suitable way to inform EU MSs/ACs about future advances of DIPoH. Both boards provided valuable feedback to develop this infrastructure. Eleven countries and sixteen institutions supported the proposal, either by letters of political support or by signing the Memorandum of Understandings (MoU) and three countries, additionally, provided expression of financial commitment, for DIPoH to be added to the ESFRI 2021 roadmap.ConclusionsTDs and AoM were key forums to develop, advise, advocate and provide support for a sustainable European research infrastructure for Population Health.
Highlights
Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease
National Technical Experts (NTE), within the Technical Dialogues (TDs), considered that Distributed Infrastructure on Population Health (DIPoH) was useful for technical mutual learning and cooperation among and within countries; they considered that the technical feasibility to uptake Information for Action (InfAct) deliverables at the national and European Union (EU) level was complex
This paper aims to analyze the activities within InfAct to integrate technical and political views and the results obtained from those activities, in terms of advice and support, from EU/EEA Member States (MSs) for innovate health information (HI) and setting up DIPoH, as a way forward to ensure sustainability beyond EU funded projects
Summary
Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. The Council of the European Union (EU) [1] recommended in 2013 to the Commission of the EU and to the Member States (MSs) to establish an integrated and sustainable EU Health information system (HIS) focussed on Population Health and Health Systems Performance (HSP) This recommendation was not included in the agenda of main priorities of the MSs. there was no general consensus at the EU and European Economic Area Member States (EU/EEA MSs) on how to develop this initiative and guarantee its sustainability. This valuable initiative lacked sustainability at the EU level, due to an absence of updating and a definite governance structure beyond its funding period
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