PHIRI: lessons for an extensive reuse of sensitive data in federated health research.

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.

Delayed treatment in breast cancer patients during the COVID-19 pandemic: a population health information research infrastructure (PHIRI) case study.

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.

Has the COVID-19 pandemic changed existing patterns of non-COVID-19 health care utilization? A retrospective analysis of six regions in Europe.

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.

Federated causal inference based on real-world observational data sources: application to a SARS-CoV-2 vaccine effectiveness assessment.

INTRODUCTION: Causal inference helps researchers and policy-makers to evaluate public health interventions. When comparing interventions or public health programs by leveraging observational sensitive individual-level data from populations crossing jurisdictional borders, a federated approach (as opposed to a pooling data approach) can be used. Approaching causal inference by re-using routinely collected observational data across different regions in a federated manner, is challenging and guidance is currently lacking. With the aim of filling this gap and allowing a rapid response in the case of a next pandemic, a methodological framework to develop studies attempting causal inference using federated cross-national sensitive observational data, is described and showcased within the European BeYond-COVID project. METHODS: A framework for approaching federated causal inference by re-using routinely collected observational data across different regions, based on principles of legal, organizational, semantic and technical interoperability, is proposed. The framework includes step-by-step guidance, from defining a research question, to establishing a causal model, identifying and specifying data requirements in a common data model, generating synthetic data, and developing an interoperable and reproducible analytical pipeline for distributed deployment. The conceptual and instrumental phase of the framework was demonstrated and an analytical pipeline implementing federated causal inference was prototyped using open-source software in preparation for the assessment of real-world effectiveness of SARS-CoV-2 primary vaccination in preventing infection in populations spanning different countries, integrating a data quality assessment, imputation of missing values, matching of exposed to unexposed individuals based on confounders identified in the causal model and a survival analysis within the matched population. RESULTS: The conceptual and instrumental phase of the proposed methodological framework was successfully demonstrated within the BY-COVID project. Different Findable, Accessible, Interoperable and Reusable (FAIR) research objects were produced, such as a study protocol, a data management plan, a common data model, a synthetic dataset and an interoperable analytical pipeline. CONCLUSIONS: The framework provides a systematic approach to address federated cross-national policy-relevant causal research questions based on sensitive population, health and care data in a privacy-preserving and interoperable way. The methodology and derived research objects can be re-used and contribute to pandemic preparedness.

Exploring long-term breast cancer survivors' care trajectories using dynamic time warping-based unsupervised clustering.

OBJECTIVES: Long-term breast cancer survivors (BCS) constitute a complex group of patients, whose number is estimated to continue rising, such that, a dedicated long-term clinical follow-up is necessary. MATERIALS AND METHODS: A dynamic time warping-based unsupervised clustering methodology is presented in this article for the identification of temporal patterns in the care trajectories of 6214 female BCS of a large longitudinal retrospective cohort of Spain. The extracted care-transition patterns are graphically represented using directed network diagrams with aggregated patient and time information. A control group consisting of 12 412 females without breast cancer is also used for comparison. RESULTS: The use of radiology and hospital admission are explored as patterns of special interest. In the generated networks, a more intense and complex use of certain healthcare services (eg, radiology, outpatient care, hospital admission) is shown and quantified for the BCS. Higher mortality rates and numbers of comorbidities are observed in various transitions and compared with non-breast cancer. It is also demonstrated how a wealth of patient and time information can be revealed from individual service transitions. DISCUSSION: The presented methodology permits the identification and descriptive visualization of temporal patterns of the usage of healthcare services by the BCS, that otherwise would remain hidden in the trajectories. CONCLUSION: The results could provide the basis for better understanding the BCS' circulation through the health system, with a view to more efficiently predicting their forthcoming needs and thus designing more effective personalized survivorship care plans.

Differences in acute ischaemic stroke in-hospital mortality across referral stroke hospitals in Spain: a retrospective, longitudinal observational study.

OBJECTIVE: To assess differences in acute ischaemic stroke (AIS) in-hospital mortality between referral stroke hospitals and provide evidence on the association of those differences with the overtime adoption of effective reperfusion therapies. DESIGN: Retrospective, longitudinal observational study using administrative data for virtually all hospital admissions from 2003 to 2015. SETTING: Thirty-seven referral stroke hospitals in the Spanish National Health System. PARTICIPANTS: Patients aged 18 years and older with a hospital episode with an admission diagnosis of AIS in any referral stroke hospital (196 099 admissions). MAIN ENDPOINTS: (1) Hospital variation in 30-day in-hospital mortality measured in terms of the intraclass correlation coefficient (ICC); and (2) the difference in mortality between the hospital of treatment and the trend of utilisation of reperfusion therapies (including intravenous fibrinolysis and endovascular mechanical thrombectomy) in terms of median OR (MOR). RESULTS: Adjusted 30-day AIS in-hospital mortality decreased over the study period. Adjusted in-hospital mortality after AIS rates varied from 6.66% to 16.01% between hospitals. Beyond differences in patient characteristics, the relative contribution of the hospital of treatment was higher in the case of patients undergoing reperfusion therapies (ICC=0.031 (95% Bayesian credible interval (BCI)=0.017 to 0.057)) than in the case of those who did not (ICC=0.016 (95% BCI=0.010 to 0.026)). Using the MOR, the difference in risk of death was as high as 46% between the hospital with the highest risk and the hospital with the lowest risk of patients undergoing reperfusion therapy (MOR 1.46 (95% BCI 1.32 to 1.68)); in patients not undergoing any reperfusion therapy, the risk was 31% higher (MOR 1.31 (95% BCI 1.24 to 1.41)). CONCLUSIONS: In the referral stroke hospitals of the Spanish National Health System, the overall adjusted in-hospital mortality decreased between 2003 and 2015. However, between-hospital variations in mortality persisted.

Developing and testing a protocol using a common data model for federated collection and analysis of national perinatal health indicators in Europe.

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.

Work like a Doc: A comparison of regulations on residents' working hours in 14 high-income countries.

BACKGROUND: Medical residents work long, continuous hours. Working in conditions of extreme fatigue has adverse effects on the quality and safety of care, and on residents' quality of life. Many countries have attempted to regulate residents' work hours. OBJECTIVES: We aimed to review residents' work hours regulations in different countries with an emphasis on night shifts. METHODS: Standardized qualitative data on residents' working hours were collected with the assistance of experts from 14 high-income countries through a questionnaire. An international comparative analysis was performed. RESULTS: All countries reviewed limit the weekly working hours; North-American countries limit to 60-80 h, European countries limit to 48 h. In most countries, residents work 24 or 26 consecutive hours, but the number of long overnight shifts varies, ranging from two to ten. Many European countries face difficulties in complying with the weekly hour limit and allow opt-out contracts to exceed it. CONCLUSIONS: In the countries analyzed, residents still work long hours. Attempts to limit the shift length or the weekly working hours resulted in modest improvements in residents' quality of life with mixed effects on quality of care and residents' education.

Early health system responses to the COVID-19 pandemic in Mediterranean countries: A tale of successes and challenges.

This paper conducts a comparative review of the (curative) health systems' response taken by Cyprus, Greece, Israel, Italy, Malta, Portugal, and Spain during the first six months of the COVID-19 pandemic. Prior to the COVID-19 pandemic, these Mediterranean countries shared similarities in terms of health system resources, which were low compared to the EU/OECD average. We distill key policy insights regarding the governance tools adopted to manage the pandemic, the means to secure sufficient physical infrastructure and workforce capacity and some financing and coverage aspects. We performed a qualitative analysis of the evidence reported to the 'Health System Response Monitor' platform of the European Observatory by country experts. We found that governance in the early stages of the pandemic was undertaken centrally in all the Mediterranean countries, even in Italy and Spain where regional authorities usually have autonomy over health matters. Stretched public resources prompted countries to deploy "flexible" intensive care unit capacity and health workforce resources as agile solutions. The private sector was also utilized to expand resources and health workforce capacity, through special public-private partnerships. Countries ensured universal coverage for COVID-19-related services, even for groups not usually entitled to free publicly financed health care, such as undocumented migrants. We conclude that flexibility, speed and adaptive management in health policy responses were key to responding to immediate needs during the COVID-19 pandemic. Financial barriers to accessing care as well as potentially higher mortality rates were avoided in most of the countries during the first wave. Yet it is still early to assess to what extent countries were able to maintain essential services without undermining equitable access to high quality care.

Balancing financial incentives during COVID-19: A comparison of provider payment adjustments across 20 countries.

Provider payment mechanisms were adjusted in many countries in response to the COVID-19 pandemic in 2020. Our objective was to review adjustments for hospitals and healthcare professionals across 20 countries. We developed an analytical framework distinguishing between payment adjustments compensating income loss and those covering extra costs related to COVID-19. Information was extracted from the Covid-19 Health System Response Monitor (HSRM) and classified according to the framework. We found that income loss was not a problem in countries where professionals were paid by salary or capitation and hospitals received global budgets. In countries where payment was based on activity, income loss was compensated through budgets and higher fees. New FFS payments were introduced to incentivize remote services. Payments for COVID-19 related costs included new fees for out- and inpatient services but also new PD and DRG tariffs for hospitals. Budgets covered the costs of adjusting wards, creating new (ICU) beds, and hiring staff. We conclude that public payers assumed most of the COVID-19-related financial risk. In view of future pandemics policymakers should work to increase resilience of payment systems by: (1) having systems in place to rapidly adjust payment systems; (2) being aware of the economic incentives created by these adjustments such as cost-containment or increasing the number of patients or services, that can result in unintended consequences such as risk selection or overprovision of care; and (3) periodically evaluating the effects of payment adjustments on access and quality of care.

Coping with interoperability in the development of a federated research infrastructure: achievements, challenges and recommendations from the JA-InfAct.

BACKGROUND: Information for Action! is a Joint Action (JA-InfAct) on Health Information promoted by the EU Member States and funded by the European Commission within the Third EU Health Programme (2014-2020) to create and develop solid sustainable infrastructure on EU health information. The main objective of this the JA-InfAct is to build an EU health information system infrastructure and strengthen its core elements by a) establishing a sustainable research infrastructure to support population health and health system performance assessment, b) enhancing the European health information and knowledge bases, as well as health information research capacities to reduce health information inequalities, and c) supporting health information interoperability and innovative health information tools and data sources. METHODS: Following a federated analysis approach, JA-InfAct developed an ad hoc federated infrastructure based on distributing a well-defined process-mining analysis methodology to be deployed at each participating partners' systems to reproduce the analysis and pool the aggregated results from the analyses. To overcome the legal interoperability issues on international data sharing, data linkage and management, partners (EU regions) participating in the case studies worked coordinately to query their real-world healthcare data sources complying with a common data model, executed the process-mining analysis pipeline on their premises, and shared the results enabling international comparison and the identification of best practices on stroke care. RESULTS: The ad hoc federated infrastructure was designed and built upon open source technologies, providing partners with the capacity to exploit their data and generate dashboards exploring the stroke care pathways. These dashboards can be shared among the participating partners or to a coordination hub without legal issues, enabling the comparative evaluation of the caregiving activities for acute stroke across regions. Nonetheless, the approach is not free of a number of challenges that have been solved, and new challenges that should be addressed in the eventual case of scaling up. For that eventual case, 12 recommendations considering the different layers of interoperability have been provided. CONCLUSION: The proposed approach, when successfully deployed as a federated analysis infrastructure, such as the one developed within the JA-InfAct, can concisely tackle all levels of the interoperability requirements from organisational to technical interoperability, supported by the close collaboration of the partners participating in the study. Any proposal for extension, should require further thinking on how to deal with new challenges on interoperability.

Within and across country variations in treatment of patients with heart failure and diabetes.

OBJECTIVE: To compare within-country variation of health care utilization and spending of patients with chronic heart failure (CHF) and diabetes across countries. DATA SOURCES: Patient-level linked data sources compiled by the International Collaborative on Costs, Outcomes, and Needs in Care across nine countries: Australia, Canada, England, France, Germany, New Zealand, Spain, Switzerland, and the United States. DATA COLLECTION METHODS: Patients were identified in routine hospital data with a primary diagnosis of CHF and a secondary diagnosis of diabetes in 2015/2016. STUDY DESIGN: We calculated the care consumption of patients after a hospital admission over a year across the care pathway-ranging from primary care to home health nursing care. To compare the distribution of care consumption in each country, we use Gini coefficients, Lorenz curves, and female-male ratios for eight utilization and spending measures. PRINCIPAL FINDINGS: In all countries, rehabilitation and home nursing care were highly concentrated in the top decile of patients, while the number of drug prescriptions were more uniformly distributed. On average, the Gini coefficient for drug consumption is about 0.30 (95% confidence interval (CI): 0.27-0.36), while it is, 0.50 (0.45-0.56) for primary care visits, and more than 0.75 (0.81-0.92) for rehabilitation use and nurse visits at home (0.78; 0.62-0.9). Variations in spending were more pronounced than in utilization. Compared to men, women spend more days at initial hospital admission (+5%, 1.01-1.06), have a higher number of prescriptions (+7%, 1.05-1.09), and substantially more rehabilitation and home care (+20% to 35%, 0.79-1.6, 0.99-1.64), but have fewer visits to specialists (-10%; 0.84-0.97). CONCLUSIONS: Distribution of health care consumption in different settings varies within countries, but there are also some common treatment patterns across all countries. Clinicians and policy makers need to look into these differences in care utilization by sex and care setting to determine whether they are justified or indicate suboptimal care.

International comparison of spending and utilization at the end of life for hip fracture patients.

OBJECTIVE: To identify and explore differences in spending and utilization of key health services at the end of life among hip fracture patients across seven developed countries. DATA SOURCES: Individual-level claims data from the inpatient and outpatient health care sectors compiled by the International Collaborative on Costs, Outcomes, and Needs in Care (ICCONIC). STUDY DESIGN: We retrospectively analyzed utilization and spending from acute hospital care, emergency department, outpatient primary care and specialty physician visits, and outpatient drugs. Patterns of spending and utilization were compared in the last 30, 90, and 180 days across Australia, Canada, England, Germany, New Zealand, Spain, and the United States. We employed linear regression models to measure age- and sex-specific effects within and across countries. In addition, we analyzed hospital-centricity, that is, the days spent in hospital and site of death. DATA COLLECTION/EXTRACTION METHODS: We identified patients who sustained a hip fracture in 2016 and died within 12 months from date of admission. PRINCIPAL FINDINGS: Resource use, costs, and the proportion of deaths in hospital showed large variability being high in England and Spain, while low in New Zealand. Days in hospital significantly decreased with increasing age in Canada, Germany, Spain, and the United States. Hospital spending near date of death was significantly lower for women in Canada, Germany, and the United States. The age gradient and the sex effect were less pronounced in utilization and spending of emergency care, outpatient care, and drugs. CONCLUSIONS: Across seven countries, we find important variations in end-of-life care for patients who sustained a hip fracture, with some differences explained by sex and age. Our work sheds important insights that may help ongoing health policy discussions on equity, efficiency, and reimbursement in health care systems.

International comparison of health spending and utilization among people with complex multimorbidity.

OBJECTIVE: The objective of this study was to explore cross-country differences in spending and utilization across different domains of care for a multimorbid persona with heart failure and diabetes. DATA SOURCES: We used individual-level administrative claims or registry data from inpatient and outpatient health care sectors compiled by the International Collaborative on Costs, Outcomes, and Needs in Care (ICCONIC) across 11 countries: Australia, Canada, England, France, Germany, the Netherlands, New Zealand, Spain, Sweden, Switzerland, and the United States (US). DATA COLLECTION/EXTRACTION METHODS: Data collected by ICCONIC partners. STUDY DESIGN: We retrospectively analyzed age-sex standardized utilization and spending of an older person (65-90 years) hospitalized with a heart failure exacerbation and a secondary diagnosis of diabetes across five domains of care: hospital care, primary care, outpatient specialty care, post-acute rehabilitative care, and outpatient drugs. PRINCIPAL FINDINGS: Sample sizes ranged from n = 1270 in Spain to n = 21,803 in the United States. Mean age (standard deviation [SD]) ranged from 76.2 (5.6) in the Netherlands to 80.3 (6.8) in Sweden. We observed substantial variation in spending and utilization across care settings. On average, England spent $10,956 per person in hospital care while the United States spent $30,877. The United States had a shorter length of stay over the year (18.9 days) compared to France (32.9) and Germany (33.4). The United States spent more days in facility-based rehabilitative care than other countries. Australia spent $421 per person in primary care, while Spain (Aragon) spent $1557. The United States and Canada had proportionately more visits to specialist providers than primary care providers. Across almost all sectors, the United States spent more than other countries, suggesting higher prices per unit. CONCLUSION: Across 11 countries, there is substantial variation in health care spending and utilization for a complex multimorbid persona with heart failure and diabetes. Drivers of spending vary across countries, with the United States being the most expensive country due to high prices and higher use of facility-based rehabilitative care.

Differences in health outcomes for high-need high-cost patients across high-income countries.

OBJECTIVE: This study explores variations in outcomes of care for two types of patient personas-an older frail person recovering from a hip fracture and a multimorbid older patient with congestive heart failure (CHF) and diabetes. DATA SOURCES: We used individual-level patient data from 11 health systems. STUDY DESIGN: We compared inpatient mortality, mortality, and readmission rates at 30, 90, and 365 days. For the hip fracture persona, we also calculated time to surgery. Outcomes were standardized by age and sex. DATA COLLECTION/EXTRACTION METHODS: Data was compiled by the International Collaborative on Costs, Outcomes and Needs in Care across 11 countries for the years 2016-2017 (or nearest): Australia, Canada, England, France, Germany, the Netherlands, New Zealand, Spain, Sweden, Switzerland, and the United States. PRINCIPAL FINDINGS: The hip sample across ranged from 1859 patients in Aragon, Spain, to 42,849 in France. Mean age ranged from 81.2 in Switzerland to 84.7 in Australia, and the majority of hip patients across countries were female. The congestive heart failure (CHF) sample ranged from 742 patients in England to 21,803 in the United States. Mean age ranged from 77.2 in the United States to 80.3 in Sweden, and the majority of CHF patients were males. Average in-hospital mortality across countries was 4.1%. for the hip persona and 6.3% for the CHF persona. At the year mark, the mean mortality across all countries was 25.3% for the hip persona and 32.7% for CHF persona. Across both patient types, England reported the highest mortality at 1 year followed by the United States. Readmission rates for all periods were higher for the CHF persona than the hip persona. At 30 days, the average readmission rate for the hip persona was 13.8% and 27.6% for the CHF persona. CONCLUSION: Across 11 countries, there are meaningful differences in health system outcomes for two types of patients.

Differences in health care spending and utilization among older frail adults in high-income countries: ICCONIC hip fracture persona.

OBJECTIVE: This study explores differences in spending and utilization of health care services for an older person with frailty before and after a hip fracture. DATA SOURCES: We used individual-level patient data from five care settings. STUDY DESIGN: We compared utilization and spending of an older person aged older than 65 years for 365 days before and after a hip fracture across 11 countries and five domains of care as follows: acute hospital care, primary care, outpatient specialty care, post-acute rehabilitative care, and outpatient drugs. Utilization and spending were age and sex standardized.. DATA COLLECTION/EXTRACTION METHODS: The data were compiled by the International Collaborative on Costs, Outcomes, and Needs in Care (ICCONIC) across 11 countries as follows: Australia, Canada, England, France, Germany, the Netherlands, New Zealand, Spain, Sweden, Switzerland, and the United States. PRINCIPAL FINDINGS: The sample ranged from 1859 patients in Spain to 42,849 in France. Mean age ranged from 81.2 in Switzerland to 84.7 in Australia. The majority of patients across countries were female. Relative to other countries, the United States had the lowest inpatient length of stay (11.3), but the highest number of days were spent in post-acute care rehab (100.7) and, on average, had more visits to specialist providers (6.8 per year) than primary care providers (4.0 per year). Across almost all sectors, the United States spent more per person than other countries per unit ($13,622 per hospitalization, $233 per primary care visit, $386 per MD specialist visit). Patients also had high expenditures in the year prior to the hip fracture, mostly concentrated in the inpatient setting. CONCLUSION: Across 11 high-income countries, there is substantial variation in health care spending and utilization for an older person with frailty, both before and after a hip fracture. The United States is the most expensive country due to high prices and above average utilization of post-acute rehab care.

A methodology for identifying high-need, high-cost patient personas for international comparisons.

OBJECTIVE: To establish a methodological approach to compare two high-need, high-cost (HNHC) patient personas internationally. DATA SOURCES: Linked individual-level administrative data from the inpatient and outpatient sectors compiled by the International Collaborative on Costs, Outcomes, and Needs in Care (ICCONIC) across 11 countries: Australia, Canada, England, France, Germany, the Netherlands, New Zealand, Spain, Sweden, Switzerland, and the United States. STUDY DESIGN: We outline a methodological approach to identify HNHC patient types for international comparisons that reflect complex, priority populations defined by the National Academy of Medicine. We define two patient profiles using accessible patient-level datasets linked across different domains of care-hospital care, primary care, outpatient specialty care, post-acute rehabilitative care, long-term care, home-health care, and outpatient drugs. The personas include a frail older adult with a hip fracture with subsequent hip replacement and an older person with complex multimorbidity, including heart failure and diabetes. We demonstrate their comparability by examining the characteristics and clinical diagnoses captured across countries. DATA COLLECTION/EXTRACTION METHODS: Data collected by ICCONIC partners. PRINCIPAL FINDINGS: Across 11 countries, the identification of HNHC patient personas was feasible to examine variations in healthcare utilization, spending, and patient outcomes. The ability of countries to examine linked, individual-level data varied, with the Netherlands, Canada, and Germany able to comprehensively examine care across all seven domains, whereas other countries such as England, Switzerland, and New Zealand were more limited. All countries were able to identify a hip fracture persona and a heart failure persona. Patient characteristics were reassuringly similar across countries. CONCLUSION: Although there are cross-country differences in the availability and structure of data sources, countries had the ability to effectively identify comparable HNHC personas for international study. This work serves as the methodological paper for six accompanying papers examining differences in spending, utilization, and outcomes for these personas across countries.

Construction of Empirical Care Pathways Process Models From Multiple Real-World Datasets.

Care pathways (CPWs) are "multidisciplinary care plans that detail essential care steps for patients with specific clinical problems." While CPWs impact on health or cost outcomes is vastly studied, an in-depth analysis of the real-world implementation of the CPWs is an area that still remains underexplored. The present work describes how to apply an existing process mining methodology to construct the empirical CPW process models. These process models are a unique piece of information for health services research: for example to evaluate their conformance against the theoretical CPW described on clinical guidelines or to evaluate the impact of the process in health outcomes. To this purpose, this work relies on the design and implementation of a solution that a) synthesizes the expert knowledge on how health care is delivered within and across providers as an activity log, and b) constructs the CPW process model from that activity log using process mining techniques. Unlike previous research based on ad hoc data captures, current approach is built on the linkage of various heterogeneous real-world data (RWD) sets that share a minimum semantic linkage. RWD, defined as secondary use of routinely collected data as opposite to ad hoc data extractions, is a unique source of information for the CPW analysis due to its coverage of the caregiving activities and its wide availability. The viability of the solution is demonstrated by constructing the CPW process model of Code Stroke (Acute Stroke CPW) in the Aragon region (Spain).

Acknowledging the role of patient heterogeneity in hospital outcome reporting: Mortality after acute myocardial infarction in five European countries.

BACKGROUND: Hospital performance, presented as the comparison of average measurements, dismisses that hospital outcomes may vary across types of patients. We aim at drawing out the relevance of accounting for patient heterogeneity when reporting on hospital performance. METHODS: An observational study on administrative data from virtually all 2009 hospital admissions for Acute Myocardial Infarction (AMI) discharged in Denmark, Portugal, Slovenia, Spain, and Sweden. Hospital performance was proxied using in-hospital risk-adjusted mortality. Multilevel Regression Modelling (MLRM) was used to assess differences in hospital performance, comparing the estimates of random intercept modelling (capturing hospital general contextual effects (GCE)), and random slope modelling (capturing hospital contextual effects for patients with and without congestive heart failure -CHF). The weighted Kappa Index (KI) was used to assess the agreement between performance estimates. RESULTS: We analysed 46,875 admissions of AMI, 6,314 with coexistent CHF, discharged from 107 hospitals. The overall in-hospital mortality rate was 5.2%, ranging from 4% in Sweden to 6.9% in Portugal. The MLRM with random slope outperformed the model with only random intercept, highlighting a much higher GCE in CHF patients [VPC = 8.34 (CI95% 4.94 to 13.03) and MOR = 1.69 (CI95% 1.62 to 2.21) vs. VPC = 3.9 (CI95% 2.4 to 5.9), MOR of 1.42 (CI95% 1.31 to 1.54) without CHF]. No agreement was observed between estimates [KI = -0,02 (CI95% -0,08 to 0.04]. CONCLUSIONS: The different GCE in AMI patients with and without CHF, along with the lack of agreement in estimates, suggests that accounting for patient heterogeneity is required to adequately characterize and report on hospital performance.

A data infrastructure for the assessment of health care performance: lessons from the BRIDGE-health project.

The integration of different administrative data sources from a number of European countries has been shown useful in the assessment of unwarranted variations in health care performance. This essay describes the procedures used to set up a data infrastructure (e.g., data access and exchange, definition of the minimum common wealth of data required, and the development of the relational logic data model) and, the methods to produce trustworthy healthcare performance measurements (e.g., ontologies standardisation and quality assurance analysis). The paper ends providing some hints on how to use these lessons in an eventual European infrastructure on public health research and monitoring. Although the relational data infrastructure developed has been proven accurate, effective to compare health system performance across different countries, and efficient enough to deal with hundred of millions of episodes, the logic data model might not be responsive if the European infrastructure aims at including electronic health records and carrying out multi-cohort multi-intervention comparative effectiveness research. The deployment of a distributed infrastructure based on semantic interoperability, where individual data remain in-country and open-access scripts for data management and analysis travel around the hubs composing the infrastructure, might be a sensible way forward.