Strengthening non-communicable diseases monitoring systems in Europe through a multistakeholder collaborative approach: a key priority for advancing data-driven policymaking

Summary

Non-communicable diseases (NCDs) are major drivers of disability, health expenditure, and productivity loss in Europe. Effective surveillance is essential to understand evolving needs, design and evaluate interventions, and ensure accountability. This paper provides a high-level overview of NCD monitoring in Europe, focusing on cardiovascular diseases, cancer, diabetes, chronic respiratory diseases, and major modifiable risk factors. It draws on three complementary sources: the EU Joint Action on Cardiovascular Diseases and Diabetes (JACARDI, 32 countries), the Joint Action on the Prevention of NCDs (JA PreventNCD, 16 countries), and the WHO NCD Country Capacity Survey (2023, 53 WHO European Region Member States). These sources provide a comprehensive assessment of surveillance capacity, infrastructure and gaps, showing that NCD monitoring remains fragmented, underfunded, and limited in equity-sensitive data and policy integration. Strengthening governance, investment, and cross-country collaboration is crucial to build interoperable, and equity-oriented systems supporting evidence-informed decisions, accountability, and the right to health.

Search strategy and selection criteria.

References were identified through PubMed, Google Scholar, internet searches, and expert and stakeholder consultations, focusing on publications between 2015 and 2025. The literature search was conducted from March 31 to April 24, 2025. English-language documents, including articles, guidelines, reports, and policies on non-communicable diseases (NCDs) and mental health monitoring, information systems, and surveillance, were included based on their relevance to the Policy Paper's objectives. The following key search terms and combinations were used: (“noncommunicable diseases” OR “NCDs”) AND (“monitoring” OR “surveillance” OR “information systems” OR “data governance” OR “data systems” OR “registr∗”) AND (“Europe” OR “European Union” OR “EU” OR “WHO European Region” OR “WHO Europe”). Additional searches included terms related to “cardiovascular diseases”, “diabetes”, “cancer”, “chronic respiratory diseases”, “equity” and “data interoperability”. Complementary data from the Joint Action on cardiovascular diseases and diabetes (JACARDI) and the Joint Action on the Prevention of NCDs (JA PreventNCD), and the WHO NCD Country Capacity Survey (2023) were incorporated to provide a comprehensive, multi-stakeholder perspective on gaps, opportunities, and actionable recommendations for strengthening NCD monitoring across Europe.

Introduction

Public health is the cornerstone of cohesive, inclusive, and resilient societies. Beyond safeguarding health, it underpins social equity, economic productivity, and system sustainability. Yet health systems across Europe face mounting pressures from ageing populations, the rise in multimorbidity, widening socioeconomic disparities, and escalating healthcare costs.¹

Non-communicable diseases (NCDs) account for over 90% of all deaths in Europe and more than 74% globally.2, 3, 4, 5 In addition to their toll on individual wellbeing, NCDs are major drivers of disability, health expenditure, and productivity loss, jeopardising the sustainability of health systems and contributing to reduced quality of life. This burden is particularly concerning given that a substantial proportion of common NCDs are considered preventable through timely public health policies such as early detection strategies.^6,7 These dynamics point to the need for a paradigm shift—from systems focused on diagnostics and treatment to those rooted in prevention, health promotion, and equity-oriented policymaking.

Central to such a transformation is the availability and use of timely, disaggregated, and high-quality data. Effective surveillance systems—encompassing information on risk factors, disease burden, health system performance, social determinants, and quality of care—are essential for understanding evolving needs, designing targeted interventions, evaluating impact, and holding systems accountable.⁸ The World Health Organization (WHO) Global Action Plan on NCDs⁹ and its 2023–2030 Implementation Roadmap¹⁰ identify surveillance and monitoring as one of the four pillars of an effective national and global response to NCDs, calling for integrated, equity-focused, and measurable actions. The Fourth High-level Meeting of the UN General Assembly on the prevention and control of NCDs and the promotion of mental health and wellbeing (HLM4, September 2025) has provided a renewed political mandate and strategic impetus to further strengthen NCD prevention and control strategies.¹¹ The value of setting and measuring progress against concrete targets has also been underscored by the adoption of the first-ever global coverage targets for diabetes at the 75th World Health Assembly in 2022.¹²

In recent years, the European Union (EU) has launched a series of initiatives to address these issues. Notably, the European Health Data Space (EHDS) aims to harmonise data infrastructures, foster interoperability, and promote both the primary and secondary use of health data.¹³ Complementing this, the EU4Health Programme and the Healthier Together—EU NCD Initiative (2022–2027)¹⁴ have prioritised stronger NCD prevention, control, and data systems. Two Joint Actions launched in late 2023 and 2024—the Joint Action on Cardiovascular Diseases and Diabetes (JACARDI),¹⁵ and the Joint Action on Prevent Non-Communicable Diseases and Cancer (JA PreventNCD),¹⁶ represent a coordinated effort by more than 20 countries to strengthen prevention strategies and build system-level monitoring capacity (Table 1). These include developing harmonised indicators, promoting data interoperability, and embedding evidence-informed policymaking.

Table 1.

EU4Health programme—Joint Actions.

Joint Action on CVDs and diabetes—JACARDI

Joint Action on prevent non-communicable diseases and cancer–JA PreventNCD

Aim: To reduce the burden of cardiovascular diseases and diabetes—two of the most prevalent and preventable non-communicable diseases —by scaling up effective, sustainable, and context-specific prevention and care practices across Europe. JACARDI also seeks to reduce inequalities, improve health outcomes, and enhance the resilience of health systems. Strategic approach: JACARDI provides a platform for piloting innovative practices; co-developing evidence-based protocols and policy frameworks; fostering mutual learning across Europe. Critically, one of JACARDI's core pillars is to strengthen system monitoring capacity. This includes developing and promoting harmonised indicators; enhancing data interoperability and registries; raising awareness of the strategic value of data in NCD policy and practice. Number of countries involved: 21 Number of partners: 81 organisations Number of pilots: 143 pilot projects across 18 countries EU contribution: €53 million (co-funded under the EU4Health Programme 2021–2027) Project duration: 1 Nov 2023–31 Oct 2027

Aim: To support strategies, policies, and practices aimed at reducing the burden of non-communicable diseases and their common risk factors. The Joint Action focuses on health promotion and primary prevention by addressing personal and societal determinants of health, while promoting sustainable and long-term impact across Europe. Strategic approach: JA PreventNCD fosters collaboration to strengthen protective factors for health and wellbeing, reduce social inequalities linked to NCDs, and enhance NCD monitoring systems at European, national, regional, and local levels. It builds capacity across countries, harmonises methods and systems, explores innovative technologies, and promotes evidence-based communication to respond to identified needs. Number of countries involved: 25 Number of partners: 108 organisations Number of pilots: About 100 pilot projects EU contribution: about €77 million (co-funded under the EU4Health Programme 2021–2027) Project duration: 1 Jan 2024–31 Dec 2027

Abbreviations: CVDs: Cardiovascular diseases; EU: European Union; NCD: Non-communicable diseases.

This policy paper presents a high-level overview of the current landscape of NCD monitoring in Europe, with a primary focus on the four major NCDs (cardiovascular diseases [CVDs], cancer, diabetes, chronic respiratory diseases) and modifiable risk factors. These conditions represent the leading contributors to mortality globally and provide a practical, comparable foundation for surveillance and policy action, while also recognising that emerging high-burden conditions, including chronic kidney disease (CKD), metabolic dysfunction-associated steatotic liver disease (MASLD/MASH),^17,18 also merit attention in evolving monitoring systems. Additionally, while acknowledging the growing importance of mental health and environmental risk, the paper does not specifically address their related monitoring systems or data, as these are not yet as systematically developed or comparable as those available for the four major NCDs.¹⁹ Instead, it underscores the need for their inclusion within future global monitoring frameworks, including the successor to the WHO Global Monitoring Framework, particularly given the increasing political recognition of mental health and well-being in processes such as the 2025 UN High-Level Meeting on NCDs (HLM4). This paper analyses persistent data gaps, highlights opportunities for system transformation, and puts forward actionable policy recommendations to strengthen NCD surveillance at national and regional level. It outlines a pathway from fragmented efforts toward a unified, inclusive, and sustainable European framework that consolidates resources, bridges institutional gaps, and supports evidence-based policymaking and equity-focused public health action. The paper aims to inform ongoing and future professional and political processes, including follow-up to the 2025 HLM4, to help ensure that health system data monitoring systems remain central to and strengthen their role as a pillar of equity-driven NCD prevention and control strategies.

Enhancing the evidence base for action: state of art, gaps, and opportunities in NCD monitoring across Europe

NCD monitoring includes several interrelated components: 1) diseases morbidity and mortality; 2) risk factors; 3) social, commercial, and environmental determinants of health and inequalities; 4) health systems response and capacities, including quality of care and patient-reported outcomes and experiences; 5) economic and wider societal impacts, such as productivity losses, long-term care needs, implications for social protection systems; and 6) adoption and enforcement of policies. While mortality and hospital data are often routinely collected through registries and administrative systems, the systematic monitoring of upstream determinants and system performance remains less consistent.

To provide an overview of the current status of NCD and risk factors monitoring in Europe and to identify persistent gaps, this paper draws on three complementary data sources, and where appropriate, narrative evidence from the literature. The three primary sources are: i) JACARDI context analysis, a structured survey circulated in April 2024 to 32 European countries through National Focal Points (national experts for the Health Programme in EU and participating countries appointed by their national health ministries), focusing on CVDs and diabetes. The survey collected data on availability, accessibility, quality, and sharing of information; screening practices; and monitoring legislation; ii) JA PreventNCD Country Fact Sheets (CFS), submitted by 16 European countries participating in the Joint Action, report on behavioural, physiological, and environmental risk factor monitoring related to major NCDs (CVDs, diabetes, cancer, and chronic obstructive pulmonary disease [COPD]), including systems used, frequency, national recommendations, and coverage; iii) WHO NCD Country Capacity Survey (NCD CCS), conducted biennially since 2010, the latest round (2023) includes responses from all 53 Member States in the WHO European Region, providing comparable data on national capacities, policies, registries, and risk factor surveillance systems.²⁰

While these sources vary in scope, focus, and level of detail (Table 2), their combination provides a complementary view of NCD monitoring across Europe. We acknowledge that data strengths and limitations differ across three groups of countries: EU Member States, non-EU countries reporting to Eurostat, and the remaining WHO European Region. Participation in JA PreventNCD CFS and JACARDI context analysis was voluntary and may over-represent countries with stronger policies or data systems. However, integrating these sources with WHO/Europe primary data provides a more comprehensive and robust picture, allowing identification of consistent gaps, highlighting good practices, and strengthening the evidence base for actionable, policy-relevant recommendations.

Table 2.

Overview of the three data sources used to assess the state of NCD monitoring in Europe.

Data source	Year	Participating countries	Focus area	Data type	Data collection method	Strengths	Limitations
JACARDI Context Analysis	2024	32 inviteda, Responses to the survey on Data availability on CVD and diabetes: 20 countries responded; Responses to the survey on Screening for CVD: 18 countries responded; Responses to the survey on Screening for diabetes: 19 countries responded.	Cardiovascular diseases and diabetes	Quantitative and qualitative (structured survey)	Online questionnaire to National Focal Points (typically from Ministries of Health or national public health agencies)	Detailed insights on national/regional registries, screening policies, data flows, interoperability	Limited to two NCDs; self-reported data
JA PreventNCD Country Fact Sheets	2024–2025	16 countriesa	NCD and related risk factors monitoring	Narrative and semi-structured data synthesis	Standardised template completed by each country and validated at the national level (Ministerial level/other national competent authority) or by a designated expert (from a university or public health institution). An internal review and validation loop is ongoing to ensure accuracy and consistency of reported data.	Captures risk factor monitoring systems and national recommendations; includes context on health determinants	Heterogeneity in reporting; not all countries responded; lacks quantitative detail
WHO NCD Country Capacity Survey (NCD CCS)	2010–ongoing (latest: 2023)	53 Member States in the WHO European Region (100% response rate)	National capacities, policies, surveillance systems for major NCDs and risk factors	Standardised survey instrument (largely closed questions)	Biennial structured questionnaire administered by WHO	Longitudinal data; broad comparability; covers full WHO European Region	Less detailed on subnational variation; primarily focused on national-level policies and systems

Abbreviations: CVD: Cardiovascular diseases; JACARDI: Joint Action on CVDs and diabetes; JA PreventNCD: Joint Action on Prevent Non-Communicable Diseases and Cancer; NCDs: Non-communicable disease; WHO: World Health Organization.

^aNote: JACARDI Context Analysis—List of the 32 countries Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Luxemburg, Malta, Moldova, Netherlands, Norway, Poland, Portugal, Republic of Serbia, Romania, Slovakia, Slovenia, Sweden, Spain, Ukraine.

JAPreventNCD Country Fact Sheets—List of the 16 countries Belgium, Bulgaria, Denmark, Estonia, Finland, France, Germany, Greece, Iceland, Italy, Norway, Portugal, Slovenia, Spain, Sweden, Ukraine.

WHO NCD Country Capacity Survey (NCD CCS)—List of the 53 countries: Albania, Andorra, Armenia, Austria, Azerbaijan, Belarus, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Czechia, Denmark, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Kazakhstan, Kyrgyzstan, Latvia, Lithuania, Luxembourg, Malta, Monaco, Montenegro, Netherlands, North Macedonia, Norway, Poland, Portugal, Republic of Moldova, Romania, Russian Federation, San Marino, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Tajikistan, Türkiye, Turkmenistan, Ukraine, United Kingdom, and Uzbekistan.

This policy-oriented approach integrates data from multiple sources with narrative evidence from the literature to provide a high-level, evidence-informed overview, rather than a formal comparative analysis. Findings derived from the primary data sources are explicitly distinguished from literature evidence, ensuring clarity and supporting collaborative, data-driven policy insights.

Overview of findings

Across the three sources, relevant trends and persistent gaps emerge. According to the WHO NCD CCS, 84% of countries reported funding for surveillance, monitoring, and evaluation, but only 55% had national targets aligned with WHO's nine voluntary global targets, and 43% had corresponding indicators (Fig. 1). Only 49% reported having an operational multisectoral coordination mechanism beyond the health sector, and responsibility for surveillance was often fragmented across multiple organisational units within Ministries of Health.²⁰

Fig. 1.

Map of the achievement of WHO Progress Monitor Indicator on time bound targets and indicators in 2023. Note: This indicator is considered fully achieved if a country responds “Yes” to the question “Are there a set of time-bound national targets for NCDs based on the 9 voluntary global targets from the WHO Global Monitoring Framework for NCDs?” and provides the needed supporting documentation. Targets must be time-bound, based on the 9 global targets, and need to address NCD mortality, as well as key risk factors in the country and/or health systems. This indicator is considered partially achieved if the country responds “Yes” to the question “Is there a set of time-bound national targets for NCDs based on the 9 voluntary global targets from the WHO Global Monitoring Framework for NCDs?”, but the targets either do not cover two of the three areas addressed in the 9 global targets (including mortality) or are not time-bound. Data source: Assessing national capacity for the prevention and control of noncommunicable diseases: report on 2023 global survey. Geneva: World Health Organization; 2025. Licence: CC BY-NC-SA 3.0 IGO. Abbreviations: NCDs: Non-communicable diseases; WHO: World Health Organization.

As literature shows, routine administrative data such as hospitalisation records are available in most EU Member States (23 countries),²¹ and mortality data are available in all 27.22, 23, 24 JA PreventNCD CFS show that most countries rely on ICD-10 for cause-of-death and administrative data coding, although a few still use ICD-9-CM. ICD-11 implementation is underway, but timelines vary, with many countries expecting adoption by 2027. WHO CCS data indicate that 63% of countries have standardized NCD data collection in primary care and 57% in hospitals, with electronic systems less widely used (40% and 38%, respectively).²⁰

While national or regional cancer registries are available in all EU Member States,^25,26 disease-specific registries such as for CVDs and diabetes are less common. According to the JACARDI context analysis, only seven out of 20 responding countries reported having a national diabetes register that includes information on epidemiology, clinical care, and outcomes at national level, while nine had regional or local ones. For CVDs, seven reported national registries, and six had regional or local ones, for a total of ten countries with at least one registry (national, regional or both). Despite legal mandates for registries in several countries, structural funding and strategic frameworks remain limited. Major challenges identified included fragmentation, lack of data interoperability, absence of shared terminologies, and limited integration across systems. However, data from the JA PreventNCD CFS shows, that several of the participating countries in participation of EHDS are working towards implementation of SNOMED-CT and HL7/FHIR.

Risk factor surveillance also shows uneven implementation. JACARDI data from 18 countries reveal that more than half conduct health examination surveys (HES) or cohort studies to collect objective indicators such as BMI, physical activity, or diet. However, standardized risk assessment tools (e.g., Finnish Diabetes Risk Score) are seldom used, and systematic screening is rarely embedded in national frameworks. JA PreventNCD CFS confirm this variation. Most countries monitor lifestyle-related risks such as tobacco use and physical inactivity via national health interview surveys (HIS), often under the European Health Interview Survey (EHIS) regulation (EU 2024/297). EHIS contributes to improving cross-country comparability among reporting countries; however, such comparability remains partial, as countries retain flexibility in survey timing and implementation. Still, EHIS remains the main EU-wide framework supporting harmonised monitoring of self-reported health indicators.¹³ Biological and environmental risk factors are less consistently tracked. Among children, initiatives like Childhood Obesity Surveillance Initiative and Health Behaviour in School-aged Children provide comparable data,^27,28 though gaps remain in comparability, frequency, and age group coverage. JA PreventNCD CFS confirm this variation.

WHO data underscore the decline in comprehensive HES coverage: in 2023, only 19% of countries met the benchmark for conducting such surveys in the previous five years,²⁰ down from 36% in 2019²⁹ (Fig. 2). Partial achievement was widespread, often due to the lack of measured data on blood pressure and glucose—particularly in countries in the western part of the Region.

Fig. 2.

Map of the achievement of WHO Progress Monitor Indicator on health surveys. Note: This indicator is considered fully achieved if the country responds “Yes” to each of the following for adults: “Have surveys of risk factors (may be a single RF or multiple) been conducted in your country for all the following: “Harmful alcohol use”, “Physical inactivity”, “Tobacco use”, “Raised blood glucose/diabetes”, “Raised blood pressure/hypertension”, “Overweight and obesity”, and “Salt/Sodium intake”. For risk factors “Raised blood glucose/diabetes”, “Raised blood pressure/hypertension”, and “Overweight and obesity”, the data must be measured, not self-reported. Additionally, for each risk factor, the country must indicate that the last survey was conducted in the past 5 years. This indicator is considered partially achieved if the country responds that at least 3, but not all, of the above risk factors are covered, or the surveys were conducted more than 5 years ago but less than 10 years ago. Data source: Assessing national capacity for the prevention and control of noncommunicable diseases: report on 2023 global survey. Geneva: World Health Organization; 2025. Licence: CC BY-NC-SA 3.0 IGO. Abbreviations: RF: risk factor; WHO: World Health Organization.

Equity-related indicators are particularly limited. The JACARDI context analysis suggests that although some national strategies acknowledge equity, few registries or surveillance systems systematically collect sociodemographic variables beyond sex and age. Data on education, income, ethnicity, migration status, or area-level deprivation are reported to be rarely available. Screening programmes often reflect equity principles only through generic provisions such as universal access or awareness campaigns, with limited efforts to reach underserved populations (e.g., migrants, people with disabilities, or minority groups).

Identified gaps and limitations in current NCD monitoring

Despite the existence of considerable infrastructure, several structural and operational limitations continue to undermine the effectiveness, quality, utility, and sustainability of NCD monitoring systems across Europe. A central challenge lies in the absence of harmonised legal frameworks. While the EHIS benefits from formal EU regulation,²³ European HES and the development of disease registries remain largely voluntary and inconsistently and sporadically implemented across Member States.³⁰ This legal fragmentation is compounded by uneven institutional capacity and unstable financing. In many cases, surveillance systems are dependent on project-based funding or external technical assistance, leaving them vulnerable to discontinuity and incapable of supporting sustained national implementation, particularly in resource-constrained settings. Legal and structural barriers hinder the use of administrative data for disease monitoring, as strict and divergent interpretations of the General Data Protection Regulation (GDPR)³¹ in some countries limit access to health data—even for public health purposes—and restrict inter-institutional and cross-border data sharing, thereby exacerbating governance fragmentation and impeding the development of comprehensive, real-time monitoring systems.

Compounding these structural barriers is the insufficient monitoring of key environmental, commercial, digital and social determinants of health. Despite their well-established role in driving the NCD burden, exposures such as air pollution, urban green space availability, housing insecurity, unhealthy product marketing, corporate lobbying, taxation/price policies, and precarious employment are rarely incorporated into formal surveillance frameworks.³² Similarly, population-level data on education, income, social protection coverage, and neighborhood-level deprivation are limited or inconsistently collected. Even where such data exist, significant challenges persist in linking them to population-based health monitoring systems—due to the absence of harmonised data structures, siloed infrastructures, lack of interoperability, and the use of disparate identifiers. These barriers hamper the integration of clinical, administrative, environmental, and survey-based data, limiting the capacity for longitudinal, multilevel analyses. As a result, health systems remain poorly equipped to account for upstream causes of chronic disease and to design comprehensive, equity-oriented responses. Equally problematic is the persistent underrepresentation of minorities and marginalised populations—including migrants, ethnic minorities, and institutionalised groups. Data from the JA PreventNCD CFS and JACARDI context analysis show that while general population-based monitoring is common, less is known about systems designed to reach those in vulnerable situations—resulting in an incomplete picture of NCD risk factors and outcomes, particularly among those who may carry a disproportionate disease burden.

Lastly, there remains a systemic gap in the use of monitoring data to inform policy and practice. Even in contexts where national targets exist, the absence of established feedback loops—such as performance dashboards, accountability frameworks, or structured policy review mechanisms—undermines the potential of surveillance systems to guide priority setting, resource allocation, and programmatic reform. Without integration into decision-making cycles, the transformative value of data remains largely unrealised.

Opportunities for strengthening NCD monitoring systems

Despite the critical limitations that currently hinder the effectiveness and sustainability of NCD monitoring systems across Europe, several transformative opportunities are emerging that can reshape the health data landscape and support stronger, more equitable responses to NCDs.

Central to strengthening NCD monitoring across Europe is the development and implementation of the EHDS.¹³ This initiative offers a transformative framework to address persistent limitations in data fragmentation, interoperability, and the underuse of health information systems. By establishing shared legal, technical, and governance standards, the EHDS aims to enable the secure, standardized exchange and secondary use of health data across Member States—supporting real-time monitoring of disease burden, care pathways, and health outcomes.¹³ While its scope currently applies only to EU Member States, reflecting the boundaries of the EU legal framework, its principles could serve as a model for broader regional collaboration. Extending such mechanisms beyond the EU would require dedicated bilateral or multilateral agreements and governance accountability.

Crucially, its design facilitates the integration of diverse data sources—including electronic health records, disease registries, survey data, and administrative datasets—thereby expanding the evidence base for policy and service delivery. However, the EHDS primarily governs defined categories of health data, and extending its use to the broader health system data involves additional legal, ethical, and confidentiality challenges that demand careful governance and oversight.

However, realizing the full potential of the EHDS requires considering sustainable investment in active, broad-spectrum data collection, reporting, and system maintenance. While EHDS facilitates interoperability and data sharing, it is complementary to national and regional surveillance systems, and insufficient funding could risk diverting resources from essential monitoring activities. Additional technical and regulatory challenges include harmonizing data interoperability and standardization protocols, ensuring the confidentiality of sensitive information, and aligning national systems with international standards—such as the FAIR principles (Findable, Accessible, Interoperable, and Reusable). To this end, the EU and its Member States should consider prioritising the development of coherent, ethical, and transparent data-sharing frameworks that balance privacy protections with the need for accessible, high-quality, and actionable information to advance both equity and effectiveness in public health. Addressing confidentiality and information governance barriers is also critical. Harmonized data disclosure rules and protocols can facilitate agreements between national governments and international or transnational bodies for sharing disaggregated data. Secure data facilities, or “safe data centres,” provide a practical solution: they link individual-level data while releasing only aggregate, non-disclosive outputs. The required software and governance protocols already exist, but broader implementation depends on formal information governance agreements and strategic roll-out. Integrating these governance mechanisms ensures that strengthened NCD monitoring systems are both secure and capable of supporting actionable, equity-oriented decision-making across countries.

Another key opportunity lies in the strategic linkage of health survey data with administrative registers, and, where available, electronic health records. While national surveys are often viewed as resource-intensive, they provide population-level information on lifestyle, risk factors and for some diseases not available in administrative health registers. Further, their integration with routinely collected data substantially increases their value.^33,34 This linkage allows for richer, multidimensional analyses, combining the depth of biometric and self-reported data with the longitudinal reach and population coverage of administrative records. Such integrated systems not only enable more accurate identification of risk patterns and care disparities but also support life-course approaches to prevention, more precise targeting of interventions, and robust evaluation of health system performance. Although administrative data often lack the standardization and completeness required for research-grade analysis³⁵–given their primary use in service provision—their potential is greatly enhanced when leveraged within structured, ethically governed frameworks that prioritise public health utility. This opportunity requires a harmonized European approach encompassing interoperable data models, standardized terminologies such as ICD-11, SNOMED-CT and ICF, to name a few, and scalable extract-transform-load procedures. Triangulating across multiple sources—administrative data, surveys, and electronic health records—strengthens evidence, mitigates limitations such as linkage failure or attrition, and supports more equitable, data-informed public health decision-making. By combining secure governance with strategic data integration, Europe can develop NCD monitoring systems that are legally compliant, technically robust, and capable of guiding effective, equity-focused interventions across countries.

Digital transformation and emerging technologies further amplify the possibilities for advancing NCD monitoring. Artificial intelligence (AI) and machine learning are increasingly applied to large-scale health datasets, revealing patterns in disease progression, predicting high-risk individuals, and enabling more timely, targeted interventions.36, 37, 38 These tools can support earlier detection of conditions such as CVDs, diabetes, and cancers, thereby improving both clinical outcomes and resource allocation. European initiatives are piloting applications of AI to detect increased risk of NCDs and cancer, while addressing technical, legal, and implementation barriers, to support ethical, cross-border, and equitable use of AI in health.

Another promising opportunity for application of NCD monitoring systems lies in the adoption of value-based health care (VBHC).³⁹ Designed to address the growing pressures of ageing populations, multimorbidity, widening health inequalities, and escalating costs, VBHC emphasizes the delivery of services that generate measurable value for patients and populations. This includes not only clinical outcomes, but also patient-reported experiences, cost-effectiveness, equitable access, and the efficiency of care pathways.39, 40, 41 Central to VBHC is the systematic use of real-world data and real-world evidence, which can significantly enhance the existing health data ecosystem by complementing traditional surveillance sources. These data—collected in routine clinical and community settings—offer critical insights into how health services perform in practice, enabling the identification of gaps, the evaluation of integrated care models, and the alignment of interventions with what matters most to patients and communities. Despite its promise, the operationalisation of VBHC remains limited across Europe.⁴² Accelerating its integration into health information systems offers a strategic pathway to both improve NCD outcomes and ensure that monitoring frameworks are grounded in equity, relevance, and patient-centredness.

A further untapped frontier lies in the use of non-traditional and real-time data streams. Mobile applications, wearable devices, and digital platforms can provide continuous, granular insights into behavioral and physiological metrics—such as physical activity, sleep, heart rate, and geolocation. Similarly, consumer data, pharmacy transactions, occupational health records, and citizen science initiatives can yield valuable information on exposures and behaviors not captured through conventional surveillance mechanisms.⁴³ Although these sources are subject to selection biases, as participation is often voluntary and are not based on probabilistic sampling, they can still be statistically informative if sufficient data are available to quantify and correct for inherent selection biases. Their use becomes problematic primarily when certain population groups are entirely excluded, potentially leading to systematic gaps in representation. While challenges remain related to data quality, privacy, representativeness, and ethical governance, these non-traditional streams hold considerable promise for expanding the scope, responsiveness, and inclusivity of NCD surveillance—particularly when embedded within participatory, equity-oriented frameworks. In this context, they serve as complementary tools to enrich existing population-based surveillance.

Lessons learned and strategic priorities for strengthening NCD monitoring systems in Europe: informing global and regional action

Europe stands at a critical juncture in advancing NCDs surveillance. Building on the momentum generated by the 2025 HLM4, there is a critical and time-sensitive opportunity to translate long-standing political commitments into lasting systems reform. Evidence from recent initiatives—including JACARDI, JA PreventNCD, and WHO-supported efforts—has made clear that while important advances have been made, structural challenges continue to hinder the full realization of data-informed and equity-driven health governance across Europe.

A central lesson from these efforts is that monitoring systems must evolve from fragmented, project-based instruments into comprehensive, sustained, interoperable, and legally embedded components of public health architecture. Progress in NCD monitoring has too often been ad hoc—reliant on temporary projects, external funding, or individual champions—leading to uneven capacity, limited continuity, and persistent gaps in comparability and coverage. These disparities are especially evident for conditions such as CVDs, diabetes, and chronic respiratory diseases, which—with the exception of acute and specialised care typically delivered in hospital settings—are largely managed in primary care and require continuous surveillance and integrated care models. By contrast, conditions like cancer—typically addressed in specialist settings and supported by dedicated national programmes—have benefited from more structured investments and governance. These differences reflect not only the nature and chronicity of specific conditions, but also how health systems are organised to detect, monitor, and respond to them. The relatively advanced status of cancer registries illustrates this point further: it results from consistent efforts over time—driven by harmonised methodologies, legislative mandates, sustained investment, clinical prioritisation, and supranational collaboration. These experiences offer valuable lessons for other NCD areas, showing that coordinated, legally embedded, and adequately funded approaches can successfully strengthen disease surveillance systems.

One of the most pressing challenges is the failure to translate global action plans and targets—such as those set by the WHO Global Monitoring Framework and Global Diabetes targets⁴⁴—into actionable national strategies with quantifiable, time bound targets and indicators. Too often, countries report partial alignment with international objectives, with limited local adaptation or operationalization of indicators. Bridging this implementation gap requires not only technical capacity but also sustained political will, multisectoral coordination, and alignment between monitoring systems and national performance frameworks.

Equity must be placed at the centre of monitoring system reform. Underserved populations and those living in vulnerable situations—including migrants, ethnic minorities, and those living in institutional settings—remain underrepresented in national data. Gender sensitive approaches are required to uncover and address differences in risk factors, access to care, and outcomes across the life course. Without disaggregated, high-resolution surveillance, that considers intersectionality, disparities remain invisible, and interventions risk reinforcing rather than redressing inequities. Incremental, hierarchical disaggregation can help reveal disparities without requiring perfect granularity. Starting with broad geographic units—regions, local areas, neighbourhoods—and progressively incorporating individual-level social and demographic characteristics enables policymakers to identify populations at higher risk of NCDs and systematically address inequalities through targeted, evidence-informed interventions. Inclusive monitoring can be strengthened through a combination of targeted and proactive strategies. These include oversampling and outreach in surveys to engage underrepresented groups, integration of administrative and community registry data while ensuring confidentiality, partnerships with non-governmental organizations (NGOs) and local health services to reach populations living in vulnerable situations, incremental multi-source triangulation of survey, registry, and real-time data and fostering cultural humility and competence within the health workforce while co-creating approaches with underrepresented communities. Complementary measures involve incorporating equity- and gender-sensitive indicators and systematically engaging affected communities in the development of indicators, data collection, and accountability processes. While these approaches cannot fully eliminate disparities, they provide actionable insights, support equity-oriented policy, and guide resource allocation toward populations most at risk.

Strengthening NCD surveillance requires integrating environmental, commercial, and social determinants—such as air quality, housing, education, and policy influences—into routine health monitoring. Linking health data with non-health data, however, introduces additional governance and interoperability challenges, as organisations managing these datasets often operate in institutional silos, highlighting the need for robust frameworks to ensure data sharing, privacy, and coordinated decision-making.

Emerging technologies and digital innovations offer significant promise to modernize NCD surveillance. From mobile health applications and wearables to AI and geospatial mapping, the possibilities for real-time, high-granular, and predictive analytics are expanding rapidly. Yet these technologies are still largely underexploited in public health systems, due to concerns around privacy, interoperability, data quality, and public trust. A coordinated approach to data governance—grounded in the FAIR principles and aligned with GDPR—must guide the ethical and responsible integration of these tools. It is also important to recognize that outside countries adopting GDPR, other legal frameworks and privacy requirements must be addressed.

Additionally, capacity-building is paramount. Strengthening the digital health literacy of health professionals and stakeholders involved in the collection, management, and analysis of health data is critical for ensuring the effective use of health information systems. Moreover, empowering individuals to control their own health data—through education, enhanced digital literacy, measures to address broader digital exclusion related to socioeconomic status, age, and geographic access, and supportive structural mechanisms such as trusted intermediaries and secure data-sharing tools—will be crucial in supporting the broader goals of health equity and person-centred care.

Critically, monitoring must not be seen as an endpoint. Data collection only gains value when it informs decision-making and drives accountability. Despite growing volumes of health information, too few countries have established feedback mechanisms that connect monitoring to policy development, budget allocation, or service redesign.⁴⁵ Embedding structured data-to-policy cycles—through national scorecards, observatories, and real-time dashboards—can help ensure that health data is both actionable and acted upon.

Ultimately, building resilient, equity-oriented, and sustainable NCD monitoring systems will require a shift from episodic efforts to sustained, institutionalized and adequately funded collaboration. This includes formalizing roles and responsibilities across government sectors, ensuring long-term financing, and embedding monitoring in the core functions of health systems. Regional mechanisms—such as a pan-European observatory—could play a central role in supporting harmonization, peer learning, and technical assistance.

The lessons from Joint Actions are clear, progress is possible when commitments are matched by investment, coordination, and clear governance. As the global community advances toward renewed political commitments on NCDs and mental health, Europe has the tools, partnerships, and experience to lead by example. The challenge now is to convert this collective learning into a common agenda for action—rooted in evidence, grounded in equity, and oriented toward long-term sustainability and multistakeholder collaboration and multilateralism (Panel 1).

Panel 1. Fostering collaboration for NCD monitoring: the synergistic role of multistakeholder cooperation.

The growing convergence between WHO/Europe and the European Commission on NCDs, health systems resilience, and public health preparedness demonstrates the increasing relevance of structured multilateralism in addressing shared health challenges. The WHO Global Health Strategy (2025–2028)⁴⁶ and recent EU policy frameworks call for strengthened cross-sectoral partnerships, community engagement, and alignment between national and regional efforts to advance the SDGs. Within this evolving governance landscape, Joint Actions such as JACARDI and JA PreventNCD have emerged as strategic instruments for operationalizing multistakeholder cooperation. By bringing together governments, academic institutions, public health agencies, and civil society, these initiatives are enhancing national capacities for NCD monitoring, improving data harmonization, and fostering mutual learning across Member States. They provide a blueprint for how coordinated, equity-driven surveillance systems can be translated into policy and action.

A central lesson from these efforts is that collaboration must move beyond ad hoc cooperation and become embedded in governance frameworks. The sustainability of multistakeholder collaboration requires institutionalization—through formal accountability structures, dedicated financing mechanisms, standardized protocols, and inclusive governance arrangements. The upcoming cycle of global political attention to NCDs and mental health offers a timely opportunity to consolidate this approach at global level, in line with the Global Health Strategy's call for integrated governance and whole-of-society action.

Call to action: considerations for strengthening NCD monitoring systems for equity and accountability

Building on the critical momentum of the 2025 HLM4, Europe has a unique opportunity—and responsibility—to recommit to data-driven health governance and sustained investment in resilient NCD monitoring systems.

We, co-authoring senior staff of National Institutes of Public Health, research and intergovernmental organisations, call upon Member States and the international community to consider prioritising investment in robust, interoperable, and equity-sensitive NCD surveillance and monitoring systems. We call upon decision makers to consider taking decisive action to enable transformative monitoring and accountability (Panel 2).

Panel 2. Call to action: Considerations for strengthening NCD monitoring systems for equity and accountability.

Area	Operational actions
Ensure inclusive, comprehensive, and disaggregated data collection	Governments and public health institutions should consider prioritising that national monitoring systems: •Capture data on the most prevalent NCDs—including conditions beyond the four major NCDs, such as CKD and MASLD/MASH—as well as mental health conditions, behavioural, biological, and environmental risk factors, and their sources of inequity. •Disaggregate data systematically by age, sex, gender, geography, socioeconomic status, disability, and migration background, and other as appropriate. •Collect subnational and geo-coded data to uncover territorial disparities and enable place-based interventions.
Strengthen governance, legal coherence, and sustained investment	National governments and regional authorities should consider: •Institutionalising politically mandated and sustainably financed governance mechanisms for NCD monitoring. •Harmonising data protection interpretations (e.g., GDPR) to enable ethical and secure data collection, linkage, and secondary use. •Improving digital and semantic interoperability. •Ensuring cross-sector ownership and embedding monitoring in long-term policy and budget cycles.
Embed monitoring in real-time policymaking and accountability	Decision-makers and public health leaders should consider: •Integrating surveillance data into decision-making through dashboards, performance frameworks, and feedback loops. •Setting measurable, time-bound national targets aligned with WHO/SDG indicators. •Reporting regularly to policymakers and the public. •Complementing health surveillance with policy monitoring to support evidence-based and adaptive policy development, including the monitoring of NCD control strategies and enforcement
Promote meaningful participation and civil society engagement	Governments and implementing agencies should consider: •Ensuring gender equity and structured participation of youth, civil society, people with lived experience, and marginalised groups—including migrants and minorities—in monitoring system design, governance, and evaluation. •Supporting co-creation to improve equity, transparency, and ownership of NCD response efforts.
Foster multisectoral collaboration, knowledge exchange, and capacity building	All stakeholders, including international institutions, governments, academia, and civil society, should consider: •Strengthening cooperation and work together to build a coherent European monitoring architecture. •Establishing a pan-European observatory for NCD and mental health monitoring. •Coordinating indicator harmonisation, providing technical support and training, and promoting mutual learning. •Estimating the economic and social impacts of NCDs to strengthen political buy-in and driving investment in prevention, care, and system innovation.

Abbreviations: CKD: Chronic kidney disease; GDPR: General Data Protection Regulation; MASLD: metabolic dysfunction-associated steatotic liver disease; MASH: metabolic dysfunction-associated steatohepatitis; NCDs: Non-communicable diseases; SDG: Sustainable Development Goals.

Conclusion

As the global community continues to advance efforts to address NCDs and mental health, Europe has a decisive opportunity to lead by example. Robust, interoperable, and equity-sensitive monitoring systems are foundational—not only for achieving SDG target 3.4, but for realising health equity, driving system accountability, and strengthening resilience in the face of future public health challenges.

This is not merely a technical challenge. It is a moral and ethical imperative. Without inclusive and actionable monitoring, structural inequities remain hidden, policy decisions remain unanchored, and the most vulnerable remain invisible—one data point, one life, and one missed opportunity at a time.

Contributors

BA, HT, IR, KIK, GO, BF and GG have conceptualized the manuscript. BA, HT, IR and BF drafted the initial version, while all authors contributed to its review and finalization. The final manuscript was approved by all authors.

Editor note

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Disclaimers

JACARDI (Grant Agreement 101126953) and JA PreventNCD (Grant Agreement 101128023) projects have received funding from the EU4Health Programme 2021–2027. Views and opinions expressed are however those of the authors only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HaDEA). Neither the European Union nor the granting authority can be held responsible for them.

WHO disclaimer: The authors alone are responsible for the views expressed in this article and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated.

Declaration of interests

Dr Hector Bueno reports receiving research grants or contracts from AstraZeneca, Boehringer Ingelheim, and Janssen, and has received consulting fees from Novo Nordisk and Organon. All other authors declare no competing interests.