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Introduction: Ensuring access to the right information at the right time can improve the safety, effectiveness and efficiency of care. A systematic and detailed collection of patient records, commonly known as electronic health records (EHRs), forms the core of the information system architecture in integrated health systems. Description: Since January 2021, seventeen years after the German legislation to implement EHRs (elektronische Patientenakte; ePA) came into force, the sickness funds in Germany have been offering their enrollees a downloadable application with which patients can access their personal EHRs through an electronic device. Looking at the ePA adoption process, it is now safe to argue that the deployment has been anything but successful. After two years of the launch, the number of ePA users amounts to not even 1% of the insured population in Germany, failing to move the needle on integrated care and health data integration. Based on a public policy theory, this article analyses the factors that are influencing the ePA implementation and secondary use of ePA data. Discussion: As the German experience shows, the feasibility of digital health projects depends on several contextual factors: countries with a high degree of self-governance and federal structures have to manage complex coordination processes that often slow down or otherwise impede digitalisation processes. In addition, cultural peculiarities such as concerns about data protection and security can be a hindering factor for digitalisation. Whereas the new German government and European initiatives such as the European Health Data Space (EHDS) create an advantageous situation for the ePA implementation and secondary use of health data, the structural and cultural issues in Germany should be acknowledged and tackled. Conclusion: Concerning the structural factors, a further reorganisation of the board of gematik, the key organisation of digital health solutions in Germany, should be considered. Cultural factors in Germany affect especially the secondary use of data; organising information campaigns, investing in (digital) health literacy of the population and designing a user-friendly ePA application are central in this context.   Zusammenfassung Einleitung: Der Zugang zu den richtigen Informationen zur richtigen Zeit kann die Sicherheit, Wirksamkeit und Effizienz der Gesundheitsversorgung verbessern. Eine systematische und detaillierte Sammlung von Patientenakten, bekannt als Electronic Health Records (EHRs), bildet den Kern der Informationssystemarchitektur in integrierten Gesundheitssystemen. Beschreibung: Seit Januar 2021, siebzehn Jahre nach Inkrafttreten der deutschen Gesetzgebung zur Einführung der elektronischen Patientenakte (ePA), bieten die Krankenkassen eine zum Download verfügbare Anwendung an, mit der Patienten über ein elektronisches Gerät auf ihre persönliche elektronische Patientenakte zugreifen können; bisher jedoch mit wenig Erfolg. Zwei Jahre nach der Inbetriebnahme beläuft sich die Zahl der ePA-Nutzer auf weniger als 1 % der gesetzlich versicherten Bevölkerung in Deutschland; es ist also nicht gelungen, die integrierte Versorgung und Datenintegration voranzutreiben. Basierend auf einer politikwissenschaftlichen Theorie, werden in dieser Studie Faktoren analysiert, welche die ePA-Einführung und die sekundäre Nutzung von ePA-Daten beeinflussen. Diskussion: Wie die Erfahrungen mit der ePA in Deutschland zeigen, hängt die Umsetzbarkeit digitaler Gesundheitsprojekte von einer Vielzahl von kontextuellen Faktoren ab: Länder mit einem hohen Maß an Selbstverwaltung und föderalen Strukturen müssen komplexe Koordinationsprozesse bewältigen, die den Digitalisierungsprozess oft verlangsamen oder anderweitig behindern. Darüber hinaus können kulturelle Eigenheiten wie Datenschutz- und Sicherheitsbedenken die Digitalisierung behindern. Obwohl die neue Bundesregierung und europäische Initiativen, wie der Europäische Gesundheitsdatenraum (European Health Data Space; EHDS), die ePA-Implementierung und die Sekundärnutzung von Gesundheitsdaten begünstigen, sollten strukturelle und kulturelle Probleme in Deutschland berücksichtigt und angegangen werden. Schlussfolgerung: Im Hinblick auf die strukturellen Faktoren sollte eine weitere Umstrukturierung der gematik, des wichtigsten Entscheidungsorgans für digitale Gesundheitslösungen in Deutschland, in Betracht gezogen werden. Kulturelle Faktoren in Deutschland beeinflussen vor allem die Sekundärnutzung von Daten; in diesem Zusammenhang sind das Organisieren von Informationskampagnen, die Förderung der (digitalen) Gesundheitskompetenz der Bevölkerung und die Gestaltung einer nutzerfreundlichen ePA-Anwendung von zentraler Bedeutung.   Schlüsselwörter: Elektronische Patientenakte; Akzeptanz von Innovationen; Verwaltung von Gesundheitsdaten; Integrierte Versorgung; Datenintegration; Nationales Gesundheitssystem; Deutschland

Knowledge Translation (KT) aims to convey novel ideas to relevant stakeholders, motivating their response or action to improve people’s health. Initially, the KT literature focused on evidence-based medicine, applying findings from laboratory and clinical research to disease diagnosis and treatment. Since the early 2000s, the scope of KT has expanded to include decision-making with health policy implications. This systematic scoping review aims to assess the evolving knowledge-to-policy concepts, that is, macro-level KT theories, models and frameworks (KT TMFs). While significant attention has been devoted to transferring knowledge to healthcare settings (i.e. implementing health policies, programmes or measures at the meso-level), the definition of 'context' in the realm of health policymaking at the macro-level remains underexplored in the KT literature. This study aims to close the gap. A total of 32 macro-level KT TMFs were identified, with only a limited subset of them offering detailed insights into contextual factors that matter in health policymaking. Notably, the majority of these studies prompt policy changes in low- and middle-income countries and received support from international organisations, the European Union, development agencies or philanthropic entities.

Fragmentation in health systems leads to discontinuities in the provision of health services, reduces the effectiveness of interventions, and increases costs. In international comparisons, Germany is notably lagging in the context of healthcare (data) integration. Despite various political efforts spanning decades, intersectoral care and integrated health data remain controversial and are still in an embryonic phase in the country. Even more than 2 years after its launch, electronic health record (elektronische Patientenakte; ePA) users in Germany constitute only 1 per cent of the statutorily insured population, and ongoing political debates suggest that the path to broader coverage is fraught with complexities. By exploring the main stakeholders in the existing (fragmented) health system governance in Germany and their sectoral interests, this paper examines the implementation of ePA through the lens of corporatism, offering insights based on an institutional decision theory. The central point is that endeavours to better integrate health data for clinical care, scientific research and evidence-informed policymaking in Germany will need to address the roles of corporatism and self-governance.

Health system governance has been receiving increasing attention in health system research since the 1980s. The contemporary challenges that the German health system is faced with are often closely linked to governance issues. Although Germany has the highest health expenditure as a share of Gross Domestic Product (GDP) in the European Union (EU), the spending on healthcare is out of proportion to the health outcomes of the population. The reason for this lies mainly in the complexity of the German health system which is hard to steer due to several administrative levels in the country and numerous policy actors to whom the decision-making power on healthcare provision is delegated. In this paper, we present the results of focus group discussions on governance and build upon the insights gained through the Neustart project of the Robert Bosch Foundation. Based on an internationally recognised health governance framework from the World Health Organization (WHO), experts who work in, on or for the German health system addressed health governance challenges. They provided evidence-based recommendations for the new legislative period (2021-2025) on transparency, accountability, participation, integrity and capacity of the German health system.

Abstract The COVID-19 pandemic challenged healthcare delivery, especially cancer care. Telemedicine emerged as an important tool to reduce disease transmission risks, maintain continuity of care, and improve accessibility. This study explores temporary measures during the pandemic as well as challenges and facilitators for integrating telemedicine into the European healthcare landscape in five case countries, focusing on cancer care. Expert interviews were conducted in five EU countries with diverse health systems: Austria, Belgium, Denmark, Italy, and Poland. A thematic analysis was performed. Themes were further explored related to regulatory changes during COVID-19 as well as barriers and facilitators to telemedicine implementation. COVID-19 accelerated telemedicine uptake and processes (i.e. regulations, reimbursement) in all case countries. Acceptance of telemedicine increased among healthcare professionals and patients. Post-pandemic telemedicine use and acceptance declined to pre-pandemic levels in some countries and was attributed to several factors including preferences for in-person visits. Overall, persistent barriers were identified by all country experts including lack of standardized policies, data privacy concerns, technological infrastructure issues, and digital literacy gaps. Telemedicine was validated by all country experts as an important tool to enhance cancer care access and efficiency and to help maintaining continuity of cancer care during crises. Our findings highlight some overlapping barriers and suggest solutions to overcome these barriers across the selected countries. Recommendations for policymakers are listed, emphasizing the importance of telemedicine services in improving healthcare access, efficiency, and resilience. Future research should incorporate diverse population studies, patient perspectives, cost-effectiveness, and policy impacts.

Precision medicine, also known as personalized medicine, enables the provision of tailored health services to patients. In the prevention, early detection, and treatment of cancers, precision medicine is highly promising, given the increasing use of genomic profiling for diagnosis and adapting therapies in several tumor types. Artificial Intelligence (AI) can support this process by analyzing vast amounts of relevant data. However, high-quality data and financial investments in the health system are essential for the implementation of precision medicine and AI solutions in routine cancer care. Building on the quantitative outcomes of a foresight exercise published in another study, this article collects qualitative data to gain more detailed insights into the future of precision oncology in Belgium and discusses the role of AI in this field. It reports the results of a series of expert workshops, focusing on four hypothetical future scenarios that are centered around technological and economic issues that must be overcome for the widespread use of precision oncology in Belgium. The study concludes that all four scenarios discussed in the workshops would require supportive policy measures in Belgium, which should go beyond mere technological and economic considerations, such as involving patient associations and the public in policy design or creating multi-disciplinary expert groups for precision medicine. To the best of our knowledge, this is the first study to employ foresight methodology to illustrate possible future scenarios, scrutinize feasible approaches for implementing precision oncology in Belgium, and discuss the use of AI in this context.

Background Precision medicine represents a paradigm shift in health systems, moving from a one-size-fits-all approach to a more individualized form of care, spanning multiple scientific disciplines including drug discovery, genomics, and health communication. This study aims to explore the contextual factors influencing the equitable implementation of precision medicine in Belgium for incorporating precision medicine into routine cancer care within the Belgian health system. Methods As part of a foresight study, our approach evaluates critical factors affecting the implementation of precision oncology. The study scrutinizes contextual, i.e. demographic, economic, societal, technological, environmental, and political/policy-related (DESTEP) factors, identified through a comprehensive literature review and validated by a multidisciplinary group at the Belgian Cancer Center, Sciensano. An expert survey further assesses the importance and likelihood of these factors, illuminating potential barriers and facilitators to implementation. Results Based on the expert survey, five key elements (rising cancer rates, dedicated healthcare reimbursement budgets, increasing healthcare expenditures, advanced information technology solutions for data transfer, and demand for high-quality data) are expected to influence the equitable implementation of precision medicine in routine cancer care in Belgium in the future. Conclusions This work contributes to the knowledge base on precision medicine in Belgium and public health foresight, exploring the implementation challenges and suggesting solutions with an emphasis on the importance of comparative analyses of health systems, evaluation of health technology assessment methods, and the exploration of ethical issues in data privacy and equity.

Background Assessment of disability-adjusted life years (DALYs) resulting from non-communicable diseases (NCDs) requires specific calculation methods and input data. The aims of this study were to (i) identify existing NCD burden of disease (BoD) activities in Europe; (ii) collate information on data sources for mortality and morbidity; and (iii) provide an overview of NCD-specific methods for calculating NCD DALYs. Methods NCD BoD studies were systematically searched in international electronic literature databases and in grey literature. We included all BoD studies that used the DALY metric to quantify the health impact of one or more NCDs in countries belonging to the European Region. Results A total of 163 BoD studies were retained: 96 (59%) were single-country or sub-national studies and 67 (41%) considered more than one country. Of the single-country studies, 29 (30%) consisted of secondary analyses using existing Global Burden of Disease (GBD) results. Mortality data were mainly derived (49%) from vital statistics. Morbidity data were frequently (40%) drawn from routine administrative and survey datasets, including disease registries and hospital discharge databases. The majority (60%) of national BoD studies reported mortality corrections. Multimorbidity adjustments were performed in 18% of national BoD studies. Conclusion The number of national NCD BoD assessments across Europe increased over time, driven by an increase in BoD studies that consisted of secondary data analysis of GBD study findings. Ambiguity in reporting the use of NCD-specific BoD methods underlines the need for reporting guidelines of BoD studies to enhance the transparency of NCD BoD estimates across Europe.

Background: Assessment of disability-adjusted life years (DALYs) resulting from non-communicable diseases (NCDs) requires specific calculation methods and input data. The aims of this study were to (i) identify existing NCD burden of disease (BoD) activities in Europe; (ii) collate information on data sources for mortality and morbidity; and (iii) provide an overview of NCD-specific methods for calculating NCD DALYs. Methods: NCD BoD studies were systematically searched in international electronic literature databases and in grey literature. We included all BoD studies that used the DALY metric to quantify the health impact of one or more NCDs in countries belonging to the European Region. Results: A total of 163 BoD studies were retained: 96 (59%) were single-country or sub-national studies and 67 (41%) considered more than one country. Of the single-country studies, 29 (30%) consisted of secondary analyses using existing Global Burden of Disease (GBD) results. Mortality data were mainly derived (49%) from vital statistics. Morbidity data were frequently (40%) drawn from routine administrative and survey datasets, including disease registries and hospital discharge databases. The majority (60%) of national BoD studies reported mortality corrections. Multimorbidity adjustments were performed in 18% of national BoD studies. Conclusion: The number of national NCD BoD assessments across Europe increased over time, driven by an increase in BoD studies that consisted of secondary data analysis of GBD study findings. Ambiguity in reporting the use of NCD-specific BoD methods underlines the need for reporting guidelines of BoD studies to enhance the transparency of NCD BoD estimates across Europe.