Integrating technical and political views for a sustainable European Distributed Infrastructure on Population Health

Abstract

Background Non-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. Methods InfAct 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. Results NTE, 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. Conclusions TDs and AoM were key forums to develop, advise, advocate and provide support for a sustainable European research infrastructure for Population Health.

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

“…Therefore, it was mentioned that InfAct should explore further options to perform data linkage, sharing, management and reporting in the near future. In addition, an EU-consensus guideline for data anonymization is urgently needed [ 12 , 13 ].…”

“…These documents covered topics such as the status of HIS in MS, health information capacity building activities, tools and methods for health information support, a proof of concept for a sustainable structure on health information, innovative methods for public health policy development and interoperability in public health. These outcomes and proposals were discussed during Technical Dialogues (TD) with national experts in health information appointed by Ministries of Health and national public health institutes [ 12 , 13 ]. The TD facilitated the exchange of InfAct results with national counterparts, assessing their added value and the feasibility of integrating such outcomes and good practices at national and EU level.…”

“…The TD facilitated the exchange of InfAct results with national counterparts, assessing their added value and the feasibility of integrating such outcomes and good practices at national and EU level. Finally, the Assembly of Members (AoM), which gathered high level representatives from the Ministries of Health and Science in countries provided political guidance for their acceptance [ 13 ]. The sustainability plan for a common EU health information system infrastructure was built on the integration of InfAct outcomes and activities, their technical feasibility and their political acceptance.…”

Seeing the random forest through the decision trees. Supporting learning health systems from histopathology with machine learning models: Challenges and opportunities

“…Although major challenges related to data governance/ management, 135,[175][176][177][178][179][180][181][182][183] ethical/legal, [184][185][186][187] and environmental 188,189 considerations would need to be addressed, these "dynamic multimodal ML models" may become cost-effective in different populations 169,[190][191][192][193] if conceived as the integrative tools needed to provide precision health 22,164,165,168,[194][195][196] and support some of the iterative cycles of knowledge generation and continuous improvement of "learning health systems". 11,[197][198][199][200]…”