EU health information progress: the harvest of policy supporting projects and networks.

BACKGROUND: The European Commission supports the initiation of health information related projects and networks serving comparative population health monitoring and health system performance assessment. Many of these projects and networks have produced relevant data, standards, methods, indicators and knowledge that may be lost as these networks become inactive. The aim of this project retrieval and review was to identify health information projects and networks and their produced output; and subsequently facilitate systematic access to this information for policy makers, researchers and interested others via a web-based repository. METHODS: The scope of this article covers 1. population health oriented topics and 2. health system/health services oriented topics. Out of scope are specific infectious diseases; individual rare diseases; and the occurrence and effects of specific medical treatments, interventions and diagnostics; cohort studies; or studies focusing on research methods. We searched bibliographic databases and EU project databases for policy supporting projects and networks and selected those fulfilling our inclusion criteria after more in-depth inspection. We searched for their outputs. In addition, we reviewed country participation in these projects and networks. RESULTS: We identified 36 projects and networks, 16 of which are population health oriented, 6 are health systems and services oriented and 14 cover both. Their total volume of output is not easily retrievable, as many project websites have been discontinued. Some networks and/or their outputs have found continuance within European agencies and/or national institutions. Others are struggling or have gone lost, despite their policy relevance. Participation in the projects was not evenly distributed across Europe. Project information was made available through the Health Information Portal. CONCLUSIONS: EU funded projects and networks have contributed greatly to the evidence-base for policy by providing comparative health information. However, more action is needed to evaluate and conserve their outputs and facilitate continued contribution to the field after project funding stops. The realization of a sustainable infrastructure for these projects and networks is urgent. The Health Information Portal can play an important role in conserving and reusing health information. Information inequalities may exist across Europe but need further investigating.

Developing a tool to monitor knowledge translation in the health system: results from an international Delphi study.

BACKGROUND: It is generally accepted that evidence-informed decision making contributes to better health system performance and health outcomes, yet we are lacking benchmarks to monitor the impact of national health information systems (HIS) in policy and practice. Hence in this study, we have aimed to identify criteria for monitoring Knowledge Translation (KT) capacity within countries. METHODS: We conducted a web-based Delphi with over 120 public health professionals from 45 countries to reach agreement on criteria to monitor KT at the level of national HIS. Public health professionals participated in three survey rounds, in which they ranked 85 preselected criteria and could suggest additional criteria. RESULTS: Experts working in national (public) health agencies and statistical offices, as well as in health policy and care agreed on 29 criteria which constitute the Health Information (HI)-Impact Index. The criteria cover four essential domains of evaluation: the production of high-quality evidence, broad access and dissemination, stakeholder engagement and knowledge integration across sectors and in civil society. The HI-Impact Index was pretested by officials working in ministries of health and public health agencies in eight countries; they found the tool acceptable and user-friendly. CONCLUSIONS: The HI-Impact Index provides benchmarks to monitor KT so that countries can assess whether high-quality evidence can be easily accessed and used by the relevant stakeholders in health policy and practice, by civil society and across sectors. Next steps include further refining the procedure for conducting the assessment in routine, and sharing experiences from HIS evaluations using the HI-Impact Index.

Making the case for strong health information systems during a pandemic and beyond.

BACKGROUND: The Sars-CoV-2 pandemic exacerbates existing inequalities across health care systems globally, both within countries and between countries. It also highlights, like no other crisis before, existing weaknesses in health information systems (HIS). This article summarizes these key challenges for HIS in times of a pandemic and beyond, with a focus on European countries. It builds on the experiences of a large consortium representing HIS experts in key positions in national public health or similar institutes across Europe. METHODS: Data were collected in bi-weekly conference calls organized by the InfAct project between February and June 2020. Emerging themes were clustered and analysed around a WHO framework for health information systems (HIS). We analyse strengths of HIS at two levels: (i) dealing with health information directly, and (ii) dealing with other parts of information systems that allow for a holistic assessment of the pandemic (including health-related aspects). RESULTS: The analysis highlights the need for capacity-building in HIS before a pandemic hits, the relevance of going beyond health information only related to health care but taking a broader perspective (e.g. on vulnerable groups), the need for strong reporting systems on staffing numbers and in primary care. Further, data linkage emerges as a crucial precondition to identify unmet needs for essential health care services in a timely manner. Finally, room for innovation and digitalisation is key to be able to react flexibly in times of crisis. Trust for health information stakeholders is another important factor to create strong HIS. CONCLUSIONS: The strengths and shortcomings of European HIS that have been observed during the COVID-19 crisis highlight the need for strong HIS beyond the crisis. The experiences reported leave as a central message that successful reactions to the pandemic are (also) grounded in strong HIS that ultimately not only benefit the health of the population but also create a number of economic and psycho-social benefits. Strong data reporting schemes may also support fine-tuning of containment measures during a pandemic as well as transition phases.