Key learnings on introducing and using data from cancer registries: Cancer registries are key information systems that contribute to evidence-informed decision-making. Although implementation stages and ways these are used by countries might differ, common elements are needed for their impactful application:
Creating a consensus among policymakers and professionals while also integrating quality control measures and patient-reported outcomes enhances the reliability and relevance of data and supports the identification and resolution of existing barriers. |
A cancer registry is a data system established to collect, store and manage information about individuals diagnosed with cancer. They help
- identify cancer patterns across different populations or subgroups,
- track changes in cancer trends over time,
- inform the allocation of health resources based on priorities,
- support the planning and assessment of cancer control initiatives, and
- contribute to progress in clinical, epidemiological and health services research (National Cancer Institute, 2023). Additionally, they assist the forecasting of cancer incidence and mortality. For instance, Duyba et al. (2021) provided comprehensive estimates of cancer incidence and mortality for 25 major cancer types across 40 European countries in 2020, utilizing data from 151 population-based cancer registries, mortality records and population statistics to inform cancer control strategies across the continent.
The increasing digitalization of healthcare has led to a rapid expansion of cancer data registries across European countries, with the potential to significantly enhance monitoring. To explore how registries are applied in practice, the following analysis builds on findings from five case studies in Austria, Belgium, Finland and Slovenia.
Most cancer registries share the overarching goal of collecting, sharing and analyzing cancer data to improve care and to reduce inequalities. However, their specific purposes differ depending on the unique challenges within each country’s healthcare system, such as:
- A lack of comprehensive, robust and cross-sectoral data on cancer, which leads to regional disparities and variations in care quality (e.g., Finland, Slovenia), regional disparities in costs (e.g., Finland); inconsistent practices, care standards and collaboration across hospitals (e.g., Austria, Slovenia), and, ultimately, different mortality rates depending on the provider (e.g., Belgium)
- The lack of reliable, complete, or detailed cancer-related data, which limits effective policy-making and clinical decision-making (e.g., Austria, Finland)
- A gap in data accessibility due to high standards in patients’ data security, which prevents the implementation of innovative initiatives such as targeted screening programmes (e.g., Belgium)
Cancer data registries are at different levels of development across the EU
To tackle such challenges, these four countries have taken different, context-specific measures regarding data registries. While a few countries recently developed a national cancer (cost) registry (e.g., Slovenia and Finland), some are seeking to improve existing registries (e.g., Austria), and others are looking at how to make the best use of the valuable data compiled in cancer registries (e.g., Belgium) (see Box 1).Sum
Box 1. Summary of the six countries’ initiatives linked to cancer registries’ data Austria: To address the unstructured collaboration among 14 regional cancer hospitals, the Upper Austrian Tumour Centre, a cancer-specific network spanning all regional hospitals, was founded. A key component of the initiative was the establishment of a shared clinical tumour registry, which facilitates access to essential patient and tumour data across hospitals. This supports coordinated and high-quality care, particularly during patient transfers between regional facilities. Belgium: To enhance the efficiency of cancer screening programmes in the Flanders region, the Centre for Cancer Detection (Centrum voor Kankeropsporing – CvKO) collaborated with the regional government and the Belgian Cancer Registry to access relevant cancer data. Using information such as screening and consultation dates, patients’ registered practitioners and information about follow-up examinations after a positive cancer screening, CvKO has been able to issue targeted screening invitations and share anonymized data with local stakeholders responsible for screening programmes. Another initiative led by the National Institute for Health and Disability Insurance (NIHDI), in collaboration with the Belgian Cancer Registry, used the cancer registry’s data to restructure the landscape of oesophageal and pancreatic cancer surgeries. Data on upper gastrointestinal cancer showed that mortality rates are higher in hospitals performing less than 20 surgeries of this type per year (Vlayen et al., 2013). The NIHDI’s findings prompted the centralization of oesophageal and pancreatic cancer surgeries. This resulted in the number of hospitals performing oesophageal and/or pancreatic cancer surgeries decreasing from close to 100 hospitals to 10 (oesophageal) and 15 (pancreatic) centres in 2019. Finland: As a response to regional variations in costs, the Cancer Society of Finland initiated the development of a web-based Cancer Cost Database (Syövän kustannukset Suomessa), allowing users to access and analyse data on the cost of cancer. Built by the Nordic Healthcare Group, it collects annual data from the Finnish Cancer Registry, from Kela (Social Insurance Institution in Finland), THL (Finnish Institute for Welfare and Health) and Fimea (Finnish Medicines Agency) and publishes regular updates. This approach allows for the identification of performance gaps and cost differences, thereby supporting more evidence-based decision-making. Slovenia: Due to significant disparities in cancer care across hospitals, Slovenia’s National Cancer Control Program (NCCP) established specialized clinical registries to monitor quality and outcomes for its five most prevalent cancers: malignant melanoma, breast, colorectal, prostate and lung cancer. Therefore, the NCCP formed five multidisciplinary expert groups, each dedicated to a specific cancer type, to develop and oversee quality indicators derived from registry data, and to propose improvements based on their findings. The Clinical Registry of Skin Melanoma (KrMel) was launched in 2017, and by 2024 the other four registries had developed their quality indicators, aiming to streamline healthcare pathways and enhancing both the quality and equity of cancer care. |
Although cancer registries were created with similar goals, differences emerge in how they are used
In all the case studies, cancer registries’ digital platforms were created with the aim of enhancing transparency (e.g., Austria and Finland), care coordination and quality of care (e.g., Austria and Slovenia), and, ultimately, health outcomes.
However, differences emerge in how cancer registry data is used. For example, the Belgian cancer registry is used to improve service delivery, by examining volume-outcome relationships in specific cancer surgeries to support the centralization of care. It also helps to implement targeted screening programmes and offers detailed data on the population’s cancer screening status, thus providing important information for stakeholders responsible for screening programmes. Austria’s regional collaboration and Slovenia’s clinical pathway enhancements relate to improvements in service delivery.
In contrast, Finland ensures equitable access to medical products, by exploring the economic dimensions of cancer treatment, while the Netherlands’ RTBF focuses on payers (Financing).
Additionally, some countries embed registries within broader national cancer strategies. Thus, beyond service delivery, cancer registries can also inform broader policy-making and contribute to enhance healthcare equity.
Political will at all levels and adequate resources are key enablers to the meaningful use of cancer registries
Several key factors have facilitated the successful implementation and improvement of cancer data registries. A strong political will, national consensus among experts and policymakers, and a commitment to transparency proved essential in the countries Austria, Belgium and Slovenia. Adequate funding of the necessary infrastructure was another critical enabler, particularly in Austria and Slovenia. In Slovenia, investment in human resources (Workforce) and tailored IT solutions further strengthened registry development (Resources), while Belgium and Finland benefitted from pre-existing information systems, which eased integration and scalability. On the other hand, Finland’s Cancer Society emphasized the value of independence and freedom from external influence when implementing its NGO-provided service.
Prior planning that involve all stakeholders, securing adequate funding and ensuring information systems’ readiness are key elements to avoid significant barriers to change
Nonetheless, significant barriers remained, in particular, the lack of sufficient financial and human resources (Funding, Workforce). Thus, financial constraints were common, with countries citing a lack of compensation (e.g., Belgium) and workforce limitations and resource gaps leading to delayed implementation (e.g., Slovenia). This further emphasises the importance of planning and securing adequate resources.
Finally, limited interoperability between systems, as seen in Slovenia, and insufficient governmental support, as noted by Finland, also hindered effective implementation.
Unlocking the potential of cancer registries for stronger health systems
Despite various degrees of implementation, European countries share common goals in establishing national cancer registries: enhancing transparency, strengthening care coordination and improving the overall quality of cancer care. The success of these registries depends not only on adequate financial and human resources but also on strong political commitment, clear governance structures and the presence of a robust digital infrastructure.
Regardless of national context, cancer registries can be instrumental in tackling key health system challenges. The objectives of cancer registries in these case studies range from reducing regional and social inequalities in access to care, to enabling consistent service delivery and targeted resource allocation. Furthermore, they support evidence-based decision-making, guide health services planning, and improve monitoring and accountability. By facilitating the collection and analysis of timely, population-based data, they enable healthcare providers to measure outcomes, standardize care pathways, and both anticipate and respond to emerging needs.
Additionally, cancer registries also fuel innovation and value-based planning by informing clinical research, treatments evaluation and personalized care. However, maximizing the benefits of cancer registries also requires addressing common risks and critical requirements, particularly in terms of data protection, interoperability and public trust. Ensuring high data quality, aligning technical systems across institutions and maintaining patient privacy are essential to building and sustaining effective, ethically sound registries.
Ultimately, with the right conditions, cancer registries contribute to intermediate health system objectives such as improved access, better quality and more equitable care. In the long term, they foster responsiveness through increased transparency and support health systems’ final goals including improved health and efficiency.
References
Dyba, T., Randi, G., Bray, F., Martos, C., Giusti, F., Nicholson, N., ... & Bettio, M. (2021). The European cancer burden in 2020: Incidence and mortality estimates for 40 countries and 25 major cancers. European Journal of Cancer 157, 308–347.
National cancer institute (2023): Cancer Registry. https://training.seer.cancer.gov/registration/registry [Internet]
Vlayen, J., De Gendt, C., Stordeur, S., et al. Quality Indicators for the Management of Upper Gastrointestinal Cancer: Good Clinical Practice (GCP). Belgian Health Care Knowledge Center (KCE), Brussels, 2013. KCE Report 200.
World Health Organization (2007). Everybody‘s business: Strengthening health systems to improve health outcomes – WHO’s framework for action. 2007;44.
