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Background Global threats, such as the coronavirus disease 2019 (COVID-19) pandemic, have highlighted the critical importance of robust and well-functioning health information systems (HIS) in effectively addressing public health emergencies. To enhance the understanding and the functioning of such systems, it is crucial to perform HIS assessments. This article explores key gaps and identifies best practices in the COVID-19 HIS of eight European countries. Furthermore, it provides recommendations to strengthen European systems for better pandemic preparedness. Methods Assessments were carried out in eight European countries using an adapted version of the WHO support tool to strengthen HIS and the Joint Action on Health Information assessment tool. The assessments took place between January 2022 and April 2023. Results Four main themes emerged regarding the gaps and best practices identified in the various HIS: organizational, technical, legal and resources. The results of these assessments show different approaches implemented by countries to improve their HIS and respond to the demands of the pandemic. Conclusions It is imperative for countries to draw valuable insights from the COVID-19 pandemic and strengthen their HIS. This involves the adaptation or development of pandemic preparedness plans, strengthening legislative framework for data sharing and privacy protection, promotion of data standards and international definitions and implementation of a unique person identifier. Additionally, countries will have to act in this post-pandemic era and integrate the newly developed systems and innovations into existing structures, maintain and develop trust by citizens through transparent communication and engage in infodemic management and address resource gaps in the workforce. [ABSTRACT FROM AUTHOR]

Background The COVID-19 pandemic demanded quick exchanges between experts and institutions supporting governments to provide evidence-based information in response to the crisis. Initially, there was no regular cross-country forum in the field of population health. This paper describes the set-up and benefits of implementing such a forum. Methods A group of public health practitioners from academia, national public health institutes and ministries of health decided in April 2020 to meet bi-monthly to discuss a vast array of population health topics in a structured format called a Rapid Exchange Forum (REF). An ad-hoc mailing group was established to collect responses to questions brought forward in the forum from at least five countries within 24 h. This endeavour, which evolved as network of networks was awarded an EU grant in autumn 2020 and was called PHIRI (Population Health Information Research Infrastructure). Results Responses from up to 31 countries were compiled and shared immediately via the European Health Information Portal. This exchange was complemented by special REFs that focused on the advantages and disadvantages of vaccination, for example. By July 2023, 54 REFs had taken place with topics going beyond COVID-19. Conclusion The REF demonstrated its value for quick yet evidence-based cross-country exchange in times of crisis and was highly appreciated by countries and European Commission. It demonstrated its sustainability even after the acute crisis by expanding the topics covered and managing to continue exchange with the aim of capacity building and mutual learning, making it a true EU response and coordination mechanism. [ABSTRACT FROM AUTHOR]

Background Timely and high-quality population-level health information is needed to support evidence-informed decision-making, for planning and evaluation of prevention, care and cure activities as well as for research to generate new knowledge. FAIR (Findable, Accessible, Interoperable and Reusable) principles are one of the key elements supporting health research and making it more cost-effective through the reuse of already existing data. Currently, health data are in many countries dispersed and difficult to find and access. Methods Two EU Public Health Programmes co-funded Joint Actions, Information for Action (InfAct) and Population Health Information Research Infrastructure (PHIRI) have established a European Health Information Portal, a web-based service, to facilitate better findability, access, interoperability and reuse of existing health information. Results The European Health Information Portal (www.healthinformationportal.eu) has been established including sections on National Nodes, data sources, publications, health information projects within countries and across Europe, research networks and research infrastructures, ethical and legal issues for health information exchange and use, capacity-building activities in all areas of population health and a dedicated COVID-19 section. Conclusions The European Health Information Portal, being a central place for a wide range of population health information from EU Member States, is an information source for researchers, policy-makers and other relevant stakeholders. It is important to ensure the sustainability of the portal, especially in light of the European Health Data Space (EHDS) Regulation proposal and its requirements regarding the secondary use of health data. [ABSTRACT FROM AUTHOR]

Background The indirect impact of the coronavirus disease 2019 pandemic on healthcare services was studied by assessing changes in the trend of the time to first treatment for women 18 or older who were diagnosed and treated for breast cancer between 2017 and 2021. Methods An observational retrospective longitudinal study based on aggregated data from four European Union (EU) countries/regions investigating the time it took to receive breast cancer treatment. We compiled outputs from a federated analysis to detect structural breakpoints, confirming the empirical breakpoints by differences between the trends observed and forecasted after March 2020. Finally, we built several segmented regressions to explore the association of contextual factors with the observed changes in treatment delays. Results We observed empirical structural breakpoints on the monthly median time to surgery trend in Aragon (ranging from 9.20 to 17.38 days), Marche (from 37.17 to 42.04 days) and Wales (from 28.67 to 35.08 days). On the contrary, no empirical structural breakpoints were observed in Belgium (ranging from 21.25 to 23.95 days) after the pandemic's beginning. Furthermore, we confirmed statistically significant differences between the observed trend and the forecasts for Aragon and Wales. Finally, we found the interaction between the region and the pandemic's start (before/after March 2020) significantly associated with the trend of delayed breast cancer treatment at the population level. Conclusions Although they were not clinically relevant, only Aragon and Wales showed significant differences with expected delays after March 2020. However, experiences differed between countries/regions, pointing to structural factors other than the pandemic. [ABSTRACT FROM AUTHOR]

Background Before the COVID-19 pandemic, a need for a uniform approach to health information (HI) knowledge in population health analysis across Europe was evident. The Population Health Information Research Infrastructure (PHIRI) emerged as a proactive initiative to strengthen European HI capacities. This article describes the achievements of PHIRI, highlighting its capacity-building activities and their contribution towards a sustainable strategy for the implementation of the European Health Data Space (EHDS). Methods PHIRI collaboration established a work package for skill-building activities in population health in partnership with other organizations. Activities included webinars, workshops, sessions, training schools and courses for researchers and public administration workers from Europe and beyond. The primary goal of the activities was to examine the impact of COVID-19 on European health systems at both local and national levels, including healthcare facilities and policymaking entities. Results Twelve activities were organized between October 2020 and the summer of 2023. In March 2023, the Spring School on Health Information was organized to share the knowledge achieved from PHIRI and other European Union-related projects. This event also validated the European Health Information Training Programme. Conclusions PHIRI's findings emphasized the importance of equipping the workforce with core HI skills to improve health systems' preparedness and resilience. Through this research, it is possible to propose a strategy for building capacity that emphasizes the importance of providing training in human-machine dynamics. This approach will contribute to the sustainable implementation of the EHDS. [ABSTRACT FROM AUTHOR]

The authors introduce the issue, themed From Data to Public Health Actions, which features work conducted by the Population Health Information Research Infrastructure (PHIRI). Topics discussed include an overview of PHIRI, essential pillars covered by PHIRI to support strong and resilient HIS and research for evidence-based policy making across Europe, and role of PHIRI in the implementation of the European Health Data Space (EHDS).

The Netherlands Twin Register (NTR) began in 1987 with data collection in twins and their families, including families with newborn twins and triplets. Twenty-five years later, the NTR has collected at least one survey for 70,784 children, born after 1985. For the majority of twins, longitudinal data collection has been done by age-specific surveys. Shortly after giving birth, mothers receive a first survey with items on pregnancy and birth. At age 2, a survey on growth and achievement of milestones is sent. At ages 3, 7, 9/10, and 12 parents and teachers receive a series of surveys that are targeted at the development of emotional and behavior problems. From age 14 years onward, adolescent twins and their siblings report on their behavior problems, health, and lifestyle. When the twins are 18 years and older, parents are also invited to take part in survey studies. In sub-groups of different ages, in-depth phenotyping was done for IQ, electroencephalography , MRI, growth, hormones, neuropsychological assessments, and cardiovascular measures. DNA and biological samples have also been collected and large numbers of twin pairs and parents have been genotyped for zygosity by either micro-satellites or sets of short nucleotide polymorphisms and repeat polymorphisms in candidate genes. Subject recruitment and data collection is still ongoing and the longitudinal database is growing. Data collection by record linkage in the Netherlands is beginning and we expect these combined longitudinal data to provide increased insights into the genetic etiology of development of mental and physical health in children and adolescents. [ABSTRACT FROM AUTHOR]