RESUMEN
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.
Asunto(s)
COVID-19 , Sistemas de Información en Salud , Humanos , COVID-19/epidemiología , COVID-19/prevención & control , Europa (Continente) , Sistemas de Información en Salud/normas , Sistemas de Información en Salud/organización & administración , SARS-CoV-2 , Pandemias , Salud Pública , Difusión de la Información/métodosRESUMEN
BACKGROUND: During the first epidemic wave, COVID-19 surveillance focused on quantifying the magnitude and the escalation of a growing global health crisis. The scientific community first assessed risk through basic indicators, such as the number of cases or rates of new cases and deaths, and later began using other direct impact indicators to conduct more detailed analyses. We aimed at synthesizing the scientific community's contribution to assessing the direct impact of the COVID-19 pandemic on population health through indicators reported in research papers. METHODS: We conducted a rapid scoping review to identify and describe health indicators included in articles published between January 2020 and June 2021, using one strategy to search PubMed, EMBASE and WHO COVID-19 databases. Sixteen experts from European public health institutions screened papers and retrieved indicator characteristics. We also asked in an online survey how the health indicators were added to and used in policy documents in Europe. RESULTS: After reviewing 3891 records, we selected a final sample of 67 articles and 233 indicators. We identified 52 (22.3%) morbidity indicators from 33 articles, 105 severity indicators (45.1%, 27 articles) and 68 mortality indicators (29.2%, 51). Respondents from 22 countries completed 31 questionnaires, and the majority reported morbidity indicators (29, 93.5%), followed by mortality indicators (26, 83.9%). CONCLUSIONS: The indicators collated here might be useful to assess the impact of future pandemics. Therefore, their measurement should be standardized to allow for comparisons between settings, countries and different populations.
Asunto(s)
COVID-19 , Humanos , COVID-19/mortalidad , COVID-19/epidemiología , Europa (Continente)/epidemiología , Indicadores de Salud , Morbilidad , Mortalidad/tendencias , Pandemias , Índice de Severidad de la EnfermedadRESUMEN
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.
Asunto(s)
Neoplasias de la Mama , COVID-19 , SARS-CoV-2 , Tiempo de Tratamiento , Humanos , COVID-19/epidemiología , Neoplasias de la Mama/terapia , Femenino , Estudios Longitudinales , Estudios Retrospectivos , Tiempo de Tratamiento/estadística & datos numéricos , Persona de Mediana Edad , Pandemias , Adulto , Anciano , Unión Europea , Salud Poblacional , Retraso del TratamientoRESUMEN
BACKGROUND: The extensive and continuous reuse of sensitive health data could enhance the role of population health research on public decisions. This paper describes the design principles and the different building blocks that have supported the implementation and deployment of Population Health Information Research Infrastructure (PHIRI), the strengths and challenges of the approach and some future developments. METHODS: The design and implementation of PHIRI have been developed upon: (i) the data visiting principle-data does not move but code moves; (ii) the orchestration of the research question throughout a workflow that ensured legal, organizational, semantic and technological interoperability and (iii) a 'master-worker' federated computational architecture that supported the development of four uses cases. RESULTS: Nine participants nodes and 28 Euro-Peristat members completed the deployment of the infrastructure according to the expected outputs. As a consequence, each use case produced and published their own common data model, the analytical pipeline and the corresponding research outputs. All the digital objects were developed and published according to Open Science and FAIR principles. CONCLUSION: PHIRI has successfully supported the development of four use cases in a federated manner, overcoming limitations for the reuse of sensitive health data and providing a methodology to achieve interoperability in multiple research nodes.
Asunto(s)
Análisis de Datos , Datos de Salud Recolectados Rutinariamente , HumanosRESUMEN
BACKGROUND: Resilience of national health systems in Europe remains a major concern in times of multiple crises and as more evidence is emerging relating to the indirect effects of the COVID-19 pandemic on health care utilization (HCU), resulting from de-prioritization of regular, non-pandemic healthcare services. Most extant studies focus on regional, disease specific or early pandemic HCU creating difficulties in comparing across multiple countries. We provide a comparatively broad definition of HCU across multiple countries, with potential to expand across regions and timeframes. METHODS: Using a cross-country federated research infrastructure (FRI), we examined HCU for acute cardiovascular events, elective surgeries and serious trauma. Aggregated data were used in forecast modelling to identify changes from predicted European age-standardized counts via fitted regressions (2017-19), compared against post-pandemic data. RESULTS: We found that elective surgeries were most affected, universally falling below predicted levels in 2020. For cardiovascular HCU, we found lower-than-expected cases in every region for heart attacks and displayed large sex differences. Serious trauma was the least impacted by the COVID-19 pandemic. CONCLUSION: The strength of this study comes from the use of the European Population Health Information Research Infrastructure's (PHIRI) FRI, allowing for rapid analysis of regional differences to assess indirect impacts of events such as pandemics. There are marked differences in the capacity of services to return to normal in terms of elective surgery; additionally, we found considerable differences between men and women which requires further research on potential sex or gender patterns of HCU during crises.
Asunto(s)
COVID-19 , Procedimientos Quirúrgicos Electivos , Aceptación de la Atención de Salud , SARS-CoV-2 , Humanos , COVID-19/epidemiología , Europa (Continente)/epidemiología , Masculino , Femenino , Estudios Retrospectivos , Aceptación de la Atención de Salud/estadística & datos numéricos , Procedimientos Quirúrgicos Electivos/estadística & datos numéricos , Pandemias , Persona de Mediana Edad , Adulto , Anciano , Heridas y Lesiones/epidemiología , Enfermedades Cardiovasculares/epidemiologíaRESUMEN
Context: International comparisons of the health of mothers and babies provide essential benchmarks for guiding health practice and policy, but statistics are not routinely compiled in a comparable way. These data are especially critical during health emergencies, such as the coronavirus disease (COVID-19) pandemic. The Population Health Information Research Infrastructure (PHIRI) project aimed to promote the exchange of population data in Europe and included a Use Case on perinatal health. Objective: To develop and test a protocol for federated analysis of population birth data in Europe. Methods: The Euro-Peristat network with participants from 31 countries developed a Common Data Model (CDM) and R scripts to exchange and analyse aggregated data on perinatal indicators. Building on recommended Euro-Peristat indicators, complemented by a three-round consensus process, the network specified variables for a CDM and common outputs. The protocol was tested using routine birth data for 2015 to 2020; a survey was conducted assessing data provider experiences and opinions. Results: The CDM included 17 core data items for the testing phase and 18 for a future expanded phase. 28 countries and the four UK nations created individual person-level databases and ran R scripts to produce anonymous aggregate tables. Seven had all core items, 17 had 13-16, while eight had ≤12. Limitations were not having all items in the same database, required for this protocol. Infant death and mode of birth were most frequently missing. Countries took from under a day to several weeks to set up the CDM, after which the protocol was easy and quick to use. Conclusion: This open-source protocol enables rapid production and analysis of perinatal indicators and constitutes a roadmap for a sustainable European information system. It also provides minimum standards for improving national data systems and can be used in other countries to facilitate comparison of perinatal indicators.
RESUMEN
BACKGROUND: Health information (HI) strategies exist in several EU Member States, however, they mainly focus on technical issues and improving governance rather than on content-related priority setting. There is also little research available about national prioritization processes underlying HI development for policy support in the EU. The aim of this study was to broaden the knowledge base on HI prioritization strategies and to encourage expert exchange towards good practice models. A specific focus was put on HI produced for national health reporting, this being a crucial tool for policy advice. METHODS: We conducted a literature search to identify published and grey literature on national HI prioritization. This was followed by a two-round Policy Delphi study, where we explored which processes and methods exist in EU Member States and associated countries for the prioritization of HI collection. In the first round, information about these processes was gathered in semi-structured questions; in the second round, participants were asked to rank the identified approaches for desirability and feasibility. The survey was conducted online; participants were recruited from the membership of the Joint Action on Health Information (InfAct - Information for Action). RESULTS: 119 experts were contacted, representing 40 InfAct partner institutions in 28 EU Member States and associated countries. Of these, 28 experts responded fully or partially to the first round, and six to the second round. In the first round, more than half of the respondents reported the existence of structured HI prioritization processes in their countries. To prioritize HI, a clear preference was given in the second round for a formal, horizontal process which includes different experts and stakeholders. National public health institutes were named desirable key stakeholders in this process, and also desirable and feasible coordinators for stakeholder coordination. CONCLUSION: Health information prioritization methods and procedures reflect the heterogeneity of national public health systems in European countries. Mapping, sharing and ranking prioritization methods and procedures for "good practices" provides a meaningful basis for expert knowledge exchange on HI development. We recommend to make this process part of a future sustainable EU health information system and to use the information gathered in this project to initiate the development of a guidance "Good Practice HI Prioritization" among EU Member States and associated countries.
RESUMEN
BACKGROUND: Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union's (EU) health information system as providers of health information and data. The aim of this mapping exercise was to identify and analyze EU research networks in terms of health data collection methods, quality assessment, availability and accessibility procedures. METHODS: A web-based search was performed to identify EU research networks that are not part of international organizations (e.g., WHO-Europe, OECD) and are involved in collection of data for health monitoring or health system performance assessment. General characteristics of the research networks (e.g., data sources, representativeness), quality assessment procedures, availability and accessibility of health data were collected through an ad hoc extraction form. RESULTS: Fifty-seven research networks, representative at national, international or regional level, were identified. In these networks, data are mainly collected through administrative sources, health surveys and cohort studies. Over 70% of networks provide information on quality assessment of their data collection procedures. Most networks share macrodata through articles and reports, while microdata are available from ten networks. A request for data access is required by 14 networks, of which three apply a financial charge. Few networks share data with other research networks (8/49) or specify the metadata-reporting standards used for data description (9/49). CONCLUSIONS: Improving health information and availability of high quality data is a priority in Europe. Research networks could play a major role in tackling health data and information inequalities by enhancing quality, availability, and accessibility of health data and data sharing across European networks.
RESUMEN
Several innovative methods have been deployed worldwide to curb the COVID-19 pandemic. The aim of the study is to investigate which innovative methods are used to monitor COVID-19 health issues in Europe and related legislative and ethical aspects. An online questionnaire was administered to European countries' representatives of the project Population Health Information Research Infrastructure. Additional information was obtained from websites and documents provided by the respondents; an overview of the literature was also performed. Respondents from 14 countries participated in the study. Digital tools are used to monitor the spread of COVID-19 (13/14 countries) and vaccination coverage (12/14); for research, diagnostics, telehealth (14/14); to fight disinformation (11/14) and forecast the pandemic spread (4/14). The level of implementation of telehealth applications was mostly low/medium. Legislative and ethical issues were encountered in many countries, leading to institutional distrust. The COVID-19 pandemic has highlighted the need for timely and accurate health data for research purposes and policy planning. However, the use of innovative methods for population health monitoring and timely data collection has posed challenges to privacy and online security globally. Adequate regulatory oversight, targeted public health interventions, and fight against disinformation could improve the uptake rate and enhance countries' emergency preparedness.
Asunto(s)
COVID-19 , Telemedicina , Humanos , COVID-19/epidemiología , Europa (Continente)/epidemiología , Pandemias/prevención & control , SARS-CoV-2 , Telemedicina/métodosRESUMEN
BACKGROUND: Health reporting shall provide up-to-date health-related data to inform policy-makers, researchers and the public. To this end, health reporting formats should be tailored to the needs and competencies of the target groups and provide comparable and high-quality information. Within the Joint Action on Health Information 'InfAct', we aimed at gaining an overview of health reporting practices in the EU Member States and associated countries, and developed quality criteria for the preparation of public health reports. The results are intended to facilitate making health information adequately available while reducing inequalities in health reporting across the EU. METHODS: A web-based desk research was conducted among EU Member States and associated countries to generate an overview of different formats of national health reporting and their respective target groups. To identify possible quality criteria for public health reports, an exploratory literature review was performed and earlier projects were analysed. The final set of criteria was developed in exchange with experts from the InfAct consortium. RESULTS: The web-based desk research showed that public health reports are the most frequently used format across countries (94%), most often addressed to scientists and researchers (51%), politicians and decision-makers (41%). However, across all reporting formats, the general public is the most frequently addressed target group. With regards to quality criteria for public health reports, the literature review has yielded few results. Therefore, two earlier projects served as main sources: the 'Evaluation of National and Regional Public Health Reports' and the guideline 'Good Practice in Health Reporting'from Germany. In collaboration with experts, quality criteria were identified and grouped into eight categories, ranging from topic selection to presentation of results, and compiled in a checklist for easy reference. CONCLUSION: Health reporting practices in the EU are heterogeneous across Member States. The assembled quality criteria are intended to facilitate the preparation, dissemination and access to better comparable high-quality public health reports as a basis for evidence-based decision-making. A comprehensive conceptual and integrative approach that incorporates the policy perspective would be useful to investigate which dissemination strategies are the most suitable for specific requirements of the targeted groups.
RESUMEN
Considerable demographic differences characterise the Berlin, Brandenburg and Mecklenburg-Western Pomerania region (the north east region), for example, regarding settlement patterns and age structures. These differences are also observed among women in the age group 50 years and older. The most conspicuous difference is population density. While Berlin is one of the most densely populated cities in Germany, Brandenburg and Mecklenburg-Western Pomerania are the two most sparsely populated federal states. In these two states, the female population is on average older than in Berlin, a fact particularly true of rural areas. Continuing migration is a contributing factor not only to a rise in average age but also to further decreasing population density. An essential consideration for rural area health care provision are the distances people need to travel to reach services. Having (access to) a car is a key factor. Yet, as older women are less likely than men of the same age to have (access to) a car, public transport and other modern forms of mobility (dial-a-bus services, shared taxis) are gaining in importance.
RESUMEN
Geographic information systems (GISs) are computer-based systems with which geographical data can be recorded, stored, managed, analyzed, visualized and provided. In recent years, they have become an integral part of public health research. They offer a broad range of analysis tools, which enable innovative solutions for health-related research questions. An analysis of nationwide studies that applied geographic information systems underlines the potential this instrument bears for health monitoring in Germany. Geographic information systems provide up-to-date mapping and visualization options to be used for national health monitoring at the Robert Koch Institute (RKI). Furthermore, objective information on the residential environment as an influencing factor on population health and on health behavior can be gathered and linked to RKI survey data at different geographic scales. Besides using physical information, such as climate, vegetation or land use, as well as information on the built environment, the instrument can link socioeconomic and sociodemographic data as well as information on health care and environmental stress to the survey data and integrate them into concepts for analyses. Therefore, geographic information systems expand the potential of the RKI to present nationwide, representative and meaningful health-monitoring results. In doing so, data protection regulations must always be followed. To conclude, the development of a national spatial data infrastructure and the identification of important data sources can prospectively improve access to high quality data sets that are relevant for the health monitoring.