Health and Care Data: Approaches to data linkage for evidence-informed policy.

An indispensable prerequisite for answering research questions in health services research is the availability and accessibility of comprehensive, high-quality data. It can be assumed that health services research in the coming years will be increasingly based on data linkage, i.e., the linking, or connecting, of several data sources based on suitable common key variables. A range of approaches to data collection, storage, linkage and availability exists across countries, particularly for secondary research purposes (i.e., the use of data initially collected for other purposes), such as health systems research. The main goal of this review is to develop an overview of, and gain insights into, current approaches to linking data sources in the context of health services research, with the view to inform policy, based on existing practices in high-income countries in Europe and beyond. In doing so, another objective is to provide lessons for countries looking for possible or alternative approaches to data linkage. Thirteen country case studies of data linkage approaches were selected and analysed. Rather than being comprehensive, this review aimed to identify varied and potentially useful case studies to showcase different approaches to data linkage worldwide. A conceptual framework was developed to guide the selection and description of case studies. Information was first identified and collected from publicly available sources and a profile was then created for each country and each case study; these profiles were forwarded to appropriate country experts for validation and completion. The report presents an overview of the included countries and their case studies (Chapter 2), with key data per country and case study in the appendices. This is followed by a closer look at the possibilities of using routine data (Chapter 3); the different approaches to linkage (Chapter 4); the different access routes for researchers (Chapter 5); the use of data for research from electronic patient or health records (Chapter 6); foundational considerations related to data safety, privacy and governance (Chapter 7); recent developments in cross-border data sharing and the European Health Data Space (Chapter 8); and considerations of changes and responses catalysed by the COVID-19 pandemic as related to the generation and secondary use of data (Chapter 9). The review ends with overall conclusions on the necessary characteristics of data to inform research relevant for policy and highlights some insights to inspire possible future solutions - less or more disruptive - for countries looking to expand their use of data (Chapter 10). It emphasises that investing in data linkage for secondary use will not only contribute to the strengthening of national health systems, but also promote international cooperation and contribute to the international visibility of scientific excellence.

Health and care data: approaches to data linkage for evidence-informed policy

An indispensable prerequisite for answering research questions in health services research is the availability and accessibility of comprehensive, high quality data. It can be assumed that health services research in the comingyears will be increasingly based on data linkage, i.e., the linking, or connecting, of several data sources based on suitable common key variables. A range of approaches to data collection, storage, linkage and availability exists across countries, particularly for secondary research purposes (i.e., the use of data initially collected for other purposes), such as health systems research. The main goal of this review is to develop an overview of, and gain insights into, current approaches to linking data sources in the context of health services research, with the view to inform policy, based on existing practices in high-income countries in Europe and beyond. In doing so, another objective is to provide lessons for countries looking for possible or alternative approaches to data linkage. Thirteen country case studies of data linkage approaches were selected and analyzed. Rather than being comprehensive, this review aimed to identify varied and potentially useful case studies to showcase different approaches to data linkage worldwide. A conceptual framework was developed to guide the selection and description of case studies. Information was first identified and collected from publicly available sources and a profile was then created for each country and each case study; these profiles were forwarded to appropriate country experts for validation and completion.

Psychometric Validation of an Instrument for Measuring Patient Experiences with Outpatient Healthcare.

Aim: Recently, a patient-reported experience measure (PREM) was developed in Slovenia to assess patients' experiences with outpatient specialist healthcare clinics. The aim of this study was to evaluate the psychometric properties (including factor structure, reliability, convergent validity, and response distribution) of the questionnaire. Methods: The sample consisted of 8,406 adult participants treated in 171 specialist clinics from different medical fields. Participants voluntarily and anonymously responded to either the paper or online survey. Results: Descriptive statistics show meaningful response patterns with a general tendency towards favourable assessments. The psychometric analyses of the scales evaluating doctor's and nurses' work, respectively, generally showed a good fit of the unidimensional factor model as well as the Rasch model, high factor loadings and very good to satisfactory reliability. The Rasch scaling showed that these scales were most informative for patients with relatively unfavourable experience ratings. Conclusions: The results are similar to those found in previous evaluations of PREMs in other countries. Given its good psychometric properties, the Slovenian PREM can be recommended for healthcare evaluations in Slovenia and as a model for the development of similar PREMs in other countries.

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

BACKGROUND: In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct's proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct's time span. METHODS: The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support.. The technical exploration (Technical Dialogues-TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. RESULTS: The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and wellbeing of populations as impacted by COVID-19. CONCLUSIONS: The sustainability plan received wide support from Member States and was recognized to have an added value at EU level. Nevertheless, there were several aspects which still need to be considered for the near future such as: (i) a commitment of stable financial and political support by Member States (MSs), (ii) the availability of resources at regional, national and European level to deal with innovations, and (iii) a more direct involvement from EU and international institutions such as the European Centre for Disease Prevention and Control (ECDC), the World Health Organization (WHO) and the Organisation for Economic Cooperation and Development OECD for providing support and sustainable contributions.

Prevalence of sexually transmitted infections with Chlamydia trachomatis, Neisseria gonorrhoeae, Mycoplasma genitalium and Trichomonas vaginalis: findings from the National Survey of Sexual Lifestyles, Attitudes and Health, Slovenia, 2016 to 2017.

BackgroundTo inform prevention and control of sexually transmitted infections (STIs), we need reliable prevalence estimates.AimOne objective of the Slovenian National Survey of Sexual Lifestyles, Attitudes and Health was to estimate the prevalence of STIs with Chlamydia trachomatis, Neisseria gonorrhoeae, Mycoplasma genitalium and Trichomonas vaginalis.MethodsData were collected between October 2016 and July 2017 in a probability sample of the general population aged 18-49 years. Computer-assisted face-to-face interviewing and self-completion of questionnaires were used. Respondents were invited to provide urine samples to be tested for STIs.ResultsOf 1,929 survey participants, 1,087 individuals provided urine samples which were tested confidentially for C. trachomatis and a subset (n = 1,023) were tested anonymously for the other STIs. The prevalence of C. trachomatis was 0.5% (95% confidence interval (CI): 0.1-1.8) in men and 1.7% (95% CI: 0.9-3.2) in women. Age-specific prevalence was the highest among individuals aged 18-24 years, 2.8% (95% CI: 0.7-10.6) in men and 4.7% (95% CI: 1.7-12.3) in women. N. gonorrhoea was not detected. Prevalence of M. genitalium was 0.5% (95% CI: 0.1-2.2) in men and 0.3% (95% CI: 0.1-1.1) in women; the highest prevalence was among men aged 25-34 years (1.1%; 95% CI: 0.2-7.5) and women aged 35-49 years (0.5%; 95% CI: 0.1-2.0). T. vaginalis was detected in the sample from one woman (0.2%; 95% CI: 0.1-1.2).ConclusionThe substantial prevalence of C. trachomatis among young adults suggests gaps in testing, diagnosis and treatment.

Health data collection methods and procedures across EU member states: findings from the InfAct Joint Action on health information.

BACKGROUND: Health-related data are collected from a variety of sources for different purposes, including secondary use for population health monitoring (HM) and health system performance assessment (HSPA). Most of these data sources are not included in databases of international organizations (e.g., WHO, OECD, Eurostat), limiting their use for research activities and policy making. This study aims at identifying and describing collection methods, quality assessment procedures, availability and accessibility of health data across EU Member States (MS) for HM and HSPA. METHODS: A structured questionnaire was developed and administered through an online platform to partners of the InfAct consortium form EU MS to investigate data collections applied in HM and HSPA projects, as well as their methods and procedures. A descriptive analysis of the questionnaire results was performed. RESULTS: Information on 91 projects from 18 EU MS was collected. In these projects, data were mainly collected through administrative sources, population health interview or health examination surveys and from electronic medical records. Tools and methods used for data collection were mostly mandatory reports, self-administered questionnaires, or record linkage of various data sources. One-third of the projects shared data with EU research networks and less than one-third performed quality assessment of their data collection procedures using international standardized criteria. Macrodata were accessible via open access and reusable in 22 projects. Microdata were accessible upon specific request and reusable in 15 projects based on data usage licenses. Metadata was available for the majority of the projects, but followed reporting standards only in 29 projects. Overall, compliance to FAIR Data principles (Findable, Accessible, Interoperable, and Reusable) was not optimal across the EU projects. CONCLUSIONS: Data collection and exchange procedures differ across EU MS and research data are not always available, accessible, comparable or reusable for further research and evidence-based policy making. There is a need for an EU-level health information infrastructure and governance to promote and facilitate sharing and dissemination of standardized and comparable health data, following FAIR Data principles, across the EU.

Self-reported Sexually Transmitted Infections and Healthcare in Slovenia: Findings from the Second National Survey of Sexual Lifestyles, Attitudes and Health, 2016-2017.

INTRODUCTION: Objectives were to estimate the lifetime prevalence of self-reported sexually transmitted infections (STIs) and describe STIs healthcare. METHODS: Data was collected in the period 2016-2017 from a probability sample of the general population, 18-49 years old, at respondents' homes by a combination of face-to-face interviews and self-administration of more sensitive questions. Statistical methods for complex survey data were used to account for stratification, clustered sampling, and weighting. RESULTS: Approximately every tenth sexually experienced individual reported to have had genitourinary symptoms suggestive of STIs, but only a minority of them reported to have had those respective STIs diagnosed. The proportion of sexually experienced individuals that reported to have ever been diagnosed with an STI (excluding trichomoniasis, pubic lice for men and women, and pelvic inflammatory disease, vaginal thrush, bacterial vaginosis for women) was 2.4% for men and 6.7% for women (p<0.001). Independent risk factors associated with self-reported STIs in women included at least 10 lifetime sexual partners and having been forced into sex. The majority of the last STI episodes in women were treated by gynaecologists accessible at the primary healthcare level and in men by a dermatovenerologist, after referral by a general practitioner. Approximately half of STI patients were counselled for safer sex and majority reported to have notified their sexual contacts. CONCLUSIONS: Our estimates for lifetime prevalence of self-reported STIs in a probability sample of Slovenian sexually experienced men and women, 18-49 years old, indicate a substantial national burden of STIs. The results will inform national STI prevention and control policies and strategies.

Real-time monitoring shows substantial excess all-cause mortality during second wave of COVID-19 in Europe, October to December 2020.

The European monitoring of excess mortality for public health action (EuroMOMO) network monitors weekly excess all-cause mortality in 27 European countries or subnational areas. During the first wave of the coronavirus disease (COVID-19) pandemic in Europe in spring 2020, several countries experienced extraordinarily high levels of excess mortality. Europe is currently seeing another upsurge in COVID-19 cases, and EuroMOMO is again witnessing a substantial excess all-cause mortality attributable to COVID-19.

Innovative use of data sources: a cross-sectional study of data linkage and artificial intelligence practices across European countries.

BACKGROUND: The availability of data generated from different sources is increasing with the possibility to link these data sources with each other. However, linked administrative data can be complex to use and may require advanced expertise and skills in statistical analysis. The main objectives of this study were to describe the current use of data linkage at the individual level and artificial intelligence (AI) in routine public health activities, to identify the related estimated health indicators (i.e., outcome and intervention indicators) and health determinants of non-communicable diseases and the obstacles to linking different data sources. METHOD: We performed a survey across European countries to explore the current practices applied by national institutes of public health, health information and statistics for innovative use of data sources (i.e., the use of data linkage and/or AI). RESULTS: The use of data linkage and AI at national institutes of public health, health information and statistics in Europe varies. The majority of European countries use data linkage in routine by applying a deterministic method or a combination of two types of linkages (i.e., deterministic & probabilistic) for public health surveillance and research purposes. The use of AI to estimate health indicators is not frequent at national institutes of public health, health information and statistics. Using linked data, 46 health outcome indicators, 34 health determinants and 23 health intervention indicators were estimated in routine. The complex data regulation laws, lack of human resources, skills and problems with data governance, were reported by European countries as obstacles to routine data linkage for public health surveillance and research. CONCLUSIONS: Our results highlight that the majority of European countries have integrated data linkage in their routine public health activities but only a few use AI. A sustainable national health information system and a robust data governance framework allowing to link different data sources are essential to support evidence-informed health policy development. Building analytical capacity and raising awareness of the added value of data linkage in national institutes is necessary for improving the use of linked data in order to improve the quality of public health surveillance and monitoring activities.

Slovenia: Health System Review.

This analysis of the Slovene health system reviews recent developments in organization and governance, health financing, health care provision, health reforms and health system performance. The health of the population has improved over the last few decades. While life expectancy for both men and women is similar to EU averages, morbidity and mortality data show persistent disparities between regions, and mortality from external causes is particularly high. Satisfaction with health care delivery is high, but recently waiting times for some outpatient specialist services have increased. Greater focus on preventive measures is also needed as well as better care coordination, particularly for those with chronic conditions. Despite having relatively high levels of co-payments for many services covered by the universal compulsory health insurance system, these expenses are counterbalanced by voluntary health insurance, which covers 95% of the population liable for co-payments. However, Slovenia is somewhat unique among social health insurance countries in that it relies almost exclusively on payroll contributions to fund its compulsory health insurance system. This makes health sector revenues very susceptible to economic and labour market fluctuations. A future challenge will be to diversify the resource base for health system funding and thus bolster sustainability in the longer term, while preserving service delivery and quality of care. Given changing demographics and morbidity patterns, further challenges include restructuring the funding and provision of long-term care and enhancing health system efficiency through reform of purchasing and provider-payment systems.

Slovenia: health system review

This analysis of the Slovene health system reviews recent developmentsin organization and governance, health financing, health care provision,health reforms and health system performance. The health of thepopulation has improved over the last few decades. While life expectancyfor both men and women is similar to EU averages, morbidity and mortalitydata show persistent disparities between regions, and mortality from externalcauses is particularly high. Satisfaction with health care delivery is high, butrecently waiting times for some outpatient specialist services have increased.Greater focus on preventive measures is also needed as well as better carecoordination, particularly for those with chronic conditions. Despite havingrelatively high levels of co-payments for many services covered by the universalcompulsory health insurance system, these expenses are counterbalanced byvoluntary health insurance, which covers 95% of the population liable forco-payments. However, Slovenia is somewhat unique among social healthinsurance countries in that it relies almost exclusively on payroll contributionsto fund its compulsory health insurance system. This makes health sectorrevenues very susceptible to economic and labour market fluctuations. A futurechallenge will be to diversify the resource base for health system funding andthus bolster sustainability in the longer term, while preserving service deliveryand quality of care. Given changing demographics and morbidity patterns,further challenges include restructuring the funding and provision of long-termcare and enhancing health system efficiency through reform of purchasing andprovider-payment systems.

PARENT joint action: increasing the added value of patient registries in a cross-border setting.

Patient registries are poorly interoperable and as a result data exchange or aggregation across organizations, regions and countries for secondary purposes (i.e. research and public health) is difficult to perform. PARENT Joint Action aims to provide EU Member States with a set of guidelines, recommendations and tools to support setting-up, management and governance of interoperable patient registries, thus helping EU Member States to drive down cost and interoperability risks of patient registries as well as improving secondary us-age of registry data in a cross-border setting.

Suicide risk and its relationship to change in marital status.

BACKGROUND: Different types of marital status are associated with different levels of suicidal risk. AIMS: To study marital status change and the effect of its recency in relation to suicidal behavior. METHODS: Suicide victims (1614) in Slovenia and matched controls (4617) were compared for incidence and recency of marital status change during the last 5 years of their lives. RESULTS: A higher percentage of suicide victims (10.7%) had a marital status change in the last 5 years compared with the controls (5.6%). All types of marital status changes (becoming widowed, getting divorced, getting married) proved to be risk factors for suicidal behavior. Almost half of all marital status changes in suicide victims occurred in the year prior to suicide, whereas marital status changes in the control group were equally distributed over the last 5 years. For recently married and divorced people, the increase in suicide risk depended on age: The risk was higher in older people. CONCLUSIONS: Marital status change represents a risk factor for suicidal behavior. The first year after the change is critical for elevated suicidal risk, in particular for older people.