IPAAC Rapport WP4 : Cancer control policy interview survey


From July 2018 to January 2020, the Innovative Partnership for Action Against Cancer (iPAAC) Work Package 4 (WP4) performed a survey among European Union (EU) Member States to capture their experience and challenges regarding the implementation

of cancer control policies. In total, 28 countries were visited, and the meeting minutes were inductively coded using NVivo qualitative analysis software to provide the core data for this report (https://www.ipaac.eu/res/file/outputs/wp4/ipaac_wp4_ccpis_methodological...).

Two important and consistent rationale for action were found: quality and equity. Through all cancer control domains, the objectives are the same: ensure quality and tackle inequities.

When it comes to primary prevention, all countries reported having pursued innovative approaches to better inform and communicate with key stakeholders, especially related to children, adolescents and young adults (AYAs) and lower socio-economic groups. A recurrent issue concerns the sustainability of primary prevention actions. A vicious circle exists due to the difficulty in measuring short-term impacts, which in turn, does not provide support for the provision of structural budgets. Register-based collection of structured and validated data of lifestyles and interventions from electronic data sources in health care would be a key to evaluation and to generate evidence-based recommendations.

A second important challenge relates to the interference of the corporate giants of the tobacco, alcohol and food industries. Regulatory actions as well as inter-ministerial and inter-sectorial platforms have proven their efficacy to mitigate the influence of these corporate interests and promote the pursuit and maintenance of healthy lifestyles.

Regarding cancer screening, the extent of implementation of screening programs varies widely among EU Member States. The most often reported challenges concern test selection, non-appropriate governance and/or legal frameworks and the effectiveness of population-based screening programs. Some countries, as well as the scientific community, are investigating the possibility of shifting to high-risk stratified screening programme. Some groups have been found to have systematically lower compliance to organized screening programs. Special attention should be given to the means of reaching, informing and inviting these specific populations. The involvement of community health professionals (pharmacists or nurses) and the training of community lay workers have been reported by several countries to better inform the population and raise the participation of target groups to screening.

Cancer diagnostics and treatment are of high importance for both quality and equity. Most countries struggle with controlling the rise of the costs of innovation that put the sustainability of their systems at risk. Also, the rapid pace of some innovations can require regular adjustments in reimbursement schemes and decision-making processes. EU cooperation on these two matters is highly sought and needed.

Cancer care provision and organization is at the heart of action in most EU countries. It regulates the ‚what and how‘ for cancer patients and their family. Waiting times, lack of cancer care professionals, cultural habits and quality control are recurrent challenges reported by EU countries. In addition, the lack of knowledge and the persistent need to identify best practices, especially for long-term care have been raised. Comprehensive cancer care networks, patient pathways and coordinated activities have been reported as the current ways to improve and ensure quality and equity in the provision of cancer care. More efforts are needed to investigate (evidence-based) improvements that focus on a more patient-centered provision of care, especially for rehabilitation and palliative care. Rare cancers are specific priorities for these networks, especially in relation to European Reference Networks (ERNs).

Cancer information systems intersect all dimensions of cancer control and are mainly organized through cancer registries. However, their mandate and subsequent ability to support evidence-based cancer control policy varies widely. The possibility to link with other health, administrative or socio-economical information sources is key but requires legal, ethical and technical adjustments. Enhancing digitalization, data integration and interoperability ‘by design’ is crucial and requires global strategies and resources. In a context of increasing prevalence the lack of data on the whole disease trajectory, including quality of life and survivorship, is considered critical. Also, patient and carers perspectives need to be integrated to ensure meeting their needs and support development of patient-centered interventions.

Overall, EU countries are engaged in many cancer control efforts, with differing foci according to specific national needs, political agendas and resources. However, maximum capacity seem to have been reached in many domains and the support from the European Commission (EC) would help to overcome persistent challenges. Three types of support are required. First support for research, including epidemiology and health services research leading to the identification of best practices and the development of guidance. Second, support for knowledge exchange among EU countries on cancer control policy implementation. Third, legal frameworks, i.e. regulations, have the power to ensure coherent activities and provide binding force to expected good quality practice. To ensure improved effectiveness and cost-effectiveness, these three key types of support need to be organized and developed in parallel, integrated and well documented.