European Commission Initiative on Breast Cancer – ECIBC: Organisation of project guiding and support meetings report – 2014

The Joint Research Centre (JRC) coordinates the European Commission's Initiative on Breast Cancer (ECIBC). The ECBIC has two main tasks: 1) the development of a voluntary European quality assurance (QA) scheme for breast cancer services based on an EU legislative framework on accreditation covering all stages and aspects of care and 2) the set-up of the evidence base for such a QA scheme via (i) the development of the new European guidelines for breast cancer screening and diagnosis and (ii) a platform for evidence-based breast cancer guidelines covering stages other than screening and diagnosis (e.g. rehabilitation, follow-up, psychological support and palliative care). Preparation for the ECIBC included literature searches, stakeholder meetings and consensus building workshops and a European-wide survey to gather information on the status and organisation of breast cancer screening and care. This report is a summary of the meetings held in 2014.JRC.I.2-Public Health Policy Suppor

GRADE workshop: grading the quality of evidence and strength of recommendations

In December 2013, the Public Health Policy Support Unit at the European Commission's Joint Research Centre organised a two-day workshop on developing evidence-based guidelines and healthcare recommendations using GRADE. GRADE stands for Grading of Recommendations Assessment, Development and Evaluation. It is a method for grading the quality of evidence and going from this evidence to the corresponding healthcare recommendation. The aims of the workshop were: 1) To explain how to develop evidence-based guidelines and health recommendations using the GRADE approach. 2) To build a template for future trainings organised by the JRC on the guideline development process. Twenty participants, without experience using GRADE, attended the workshop—including 14 JRC staff, as well as representatives from the Directorate General for Health and Consumers (DG SANCO), the European Centre for Disease Prevention and Control (ECDC) and various external institutions. The workshop consisted of lectures on the theory behind guidelines development, group work and computer-based exercises. Organisers and participants deemed the training a success and the Public Health Policy Support Unit is planning additional GRADE-oriented workshops in the future.JRC.I.2-Public Health Policy Suppor

Report on the call for feedback about The Scope of the European guidelines for breast cancer screening and diagnosis: European Commission Initiative on Breast Cancer

In 2015, the European Commission Initiative on Breast Cancer (ECIBC) started the development of the European guidelines for breast cancer screening and diagnosis (henceforth the European Breast Guidelines) under the auspices of the Directorate-General for Health and Food Safety (DG SANTE) and the technical and scientific coordination of the Directorate-General Joint Research Centre (JRC). To support the JRC in this task, a Guidelines Development Group (GDG), consisting of independent experts and individuals, was established. The European Breast Guidelines’ scope (The Scope) represented the first output of the development process of the European Breast Guidelines. Via a public call for feedback, stakeholders and individual citizens were invited to provide their feedback on The Scope. The call for feedback was open from 18 December 2015 to 17 January 2016 and an online questionnaire was made available on the ECIBC web hub via the EU Survey platform. The JRC received a total of 82 valid responses, from 40 individuals from 18 different countries and from 42 organisations from 20 different countries. During a meeting held in Varese (Italy) in March 2016, the GDG discussed the new version of The Scope which was prepared taking into account the results of the call for feedback. The Scope was finalised and approved by the GDG after some minor editing on 6 September 2016 and was later made publicly available together with this report.JRC.F.1-Health in Societ

The ECIBC (European Commission Initiative on Breast Cancer) web hub concept and feasibility study

In December 2012, the Joint Research Centre (JRC) was assigned by the Directorate-General for Health and Consumers (now the Directorate-General for Health and Food Safety - DG SANTE) with the task of coordinating the European Commission Initiative on Breast Cancer henceforth shortened to ECIBC. ECIBC main tasks as defined in the DG SANTE published document are: • To develop a new version of the European guidelines for breast cancer screening and diagnosis based on new knowledge and evidence. • To develop a voluntary European quality assurance (QA) scheme for breast cancer services covering all care processes based on the EU legislative framework on accreditation and underpinned by the evidence provided by the guidelines With regards to guidelines covering processes other than screening and diagnosis (treatment, rehabilitation and follow-up, and all relevant horizontal aspects), a platform for breast cancer guidelines is envisaged to host existing evidence-based, high-quality guidelines. The ECIBC project also includes the definition of a concept for training of professionals in breast cancer screening and the development of a dedicated web hub, to which this report refers. The ECIBC web hub will be the communication interface with stakeholders and the main tool presenting and making available project deliverables (and their updates) over the long-term. The present report is a summary of the process of developing the concept for the ECIBC web hub and of the feasibility study activities: • It provides a list of user requirements along with some sketched ECIBC web hub pages, crafted out of a series of meetings and analysing relevant cancer-related web portals. • It describes the technical platform evaluation process that led to the selection of Liferay Portal. • It presents a high-level initial plan to provide ECIBC web hub functionality needed by the upcoming ECIBC project steps, with a pilot in the second part of 2015 and a fully functional web hub at the end of 2017. In order to develop the ECIBC web hub, the JRC carried out a specific feasibility study with three main objectives: • Analyse user requirements. • Select a technical platform. • Make an initial time and effort estimation.JRC.I.2-Public Health Policy Suppor

Systematic review on women's values and preferences concerning breast cancer screening and diagnostic services

Background: There is still lack of consensus on the benefit‐harm balance of breast cancer screening. In this scenario, women's values and preferences are crucial for developing health‐related recommendations. In the context of the European Commission Initiative on Breast Cancer, we conducted a systematic review to inform the European Breast Guidelines. Methods: We searched Medline and included primary studies assessing women's values and preferences regarding breast cancer screening and diagnosis decision making. We used a thematic approach to synthesise relevant data. The quality of evidence was determined with GRADE, including GRADE CERQual for qualitative research. Results: We included 22 individual studies. Women were willing to accept the psychological and physical burden of breast cancer screening and a significant risk of overdiagnosis and false‐positive mammography findings, in return for the benefit of earlier diagnosis. The anxiety engendered by the delay in getting results of diagnostic tests was highlighted as a significant burden, emphasising the need for rapid and efficient screening services, and clear and efficient communication. The confidence in the findings was low to moderate for screening and moderate for diagnosis, predominantly because of methodological limitations, lack of adequate understanding of the outcomes by participants, and indirectness. Conclusions: Women value more the possibility of an earlier diagnosis over the risks of a false‐positive result or overdiagnosis. Concerns remain that women may not understand the concept of overdiagnosis. Women highly value time efficient screening processes and rapid result delivery and will accept some discomfort for the peace of mind screening may provide

Characteristics and impact of interventions to support healthcare providers’ compliance with guideline recommendations for breast cancer: a systematic literature review

BackgroundBreast cancer clinical practice guidelines (CPGs) offer evidence-based recommendations to improve quality of healthcare for patients. Suboptimal compliance with breast cancer guideline recommendations remains frequent, and has been associated with a decreased survival. The aim of this systematic review was to characterize and determine the impact of available interventions to support healthcare providers' compliance with CPGs recommendations in breast cancer healthcare.MethodsWe searched for systematic reviews and primary studies in PubMed and Embase (from inception to May 2021). We included experimental and observational studies reporting on the use of interventions to support compliance with breast cancer CPGs. Eligibility assessment, data extraction and critical appraisal was conducted by one reviewer, and cross-checked by a second reviewer. Using the same approach, we synthesized the characteristics and the effects of the interventions by type of intervention (according to the EPOC taxonomy), and applied the GRADE framework to assess the certainty of evidence.ResultsWe identified 35 primary studies reporting on 24 different interventions. Most frequently described interventions consisted in computerized decision support systems (12 studies); educational interventions (seven), audit and feedback (two), and multifaceted interventions (nine). There is low quality evidence that educational interventions targeted to healthcare professionals may improve compliance with recommendations concerning breast cancer screening, diagnosis and treatment. There is moderate quality evidence that reminder systems for healthcare professionals improve compliance with recommendations concerning breast cancer screening. There is low quality evidence that multifaceted interventions may improve compliance with recommendations concerning breast cancer screening. The effectiveness of the remaining types of interventions identified have not been evaluated with appropriate study designs for such purpose. There is very limited data on the costs of implementing these interventions.ConclusionsDifferent types of interventions to support compliance with breast cancer CPGs recommendations are available, and most of them show positive effects. More robust trials are needed to strengthen the available evidence base concerning their efficacy. Gathering data on the costs of implementing the proposed interventions is needed to inform decisions about their widespread implementation

ECICC: European Commission Initiative on Colorectal Cancer

This leaflet describes the European Commission Initiative on Colorectal Cancer (ECICC), a person-centred initiative to improve colorectal cancer care in Europe. The ECICC will develop evidence-based guidelines and a quality assurance scheme for healthcare services involved in the colorectal cancer care pathway.JRC.F.1-Health in Societ

Dotting the “i” of Interoperability in FAIR Cancer-Registry Data Sets

To conform to FAIR principles, data should be findable, accessible, interoperable, and reusable. Whereas tools exist for making data findable and accessible, interoperability is not straightforward and can limit data reusability. Most interoperability-based solutions address semantic description and metadata linkage, but these alone are not sufficient for the requirements of inter-comparison of population-based cancer data, where strict adherence to data-rules is of paramount importance. Ontologies, and more importantly their formalism in description logics, can play a key role in the automation of data-harmonization processes predominantly via the formalization of the data validation rules within the data-domain model. This in turn leads to a potential quality metric allowing users or agents to determine the limitations in the interpretation and comparability of the data. An approach is described for cancer-registry data with practical examples of how the validation rules can be modeled with description logic. Conformance of data to the rules can be quantified to provide metrics for several quality dimensions. Integrating these with metrics derived for other quality dimensions using tools such as data-shape languages and data-completion tests builds up a data-quality context to serve as an additional component in the FAIR digital object to support interoperability in the wider sense

The European Cancer Information System: exploring linkages between indoor radon concentrations and data on cancer burden

Exposure to radon over time has significant detrimental effects on human health. Approximately 226,000 annual radon-related deaths have been reported from 66 countries (1). Many countries have a radon action plan, in order to reduce the harmful effects of radon exposure on the general public. Maps are routinely used to assist with mitigation strategies and delineate areas of priority regulation. Standard regulations in the European Union include the requirement for workplaces to test and the requirement to have reduction methods in newly built homes. Such laws are assigned systematically to areas that are understood to have high values of indoor radon. This article demonstrates that the boundaries of radon priority areas may vary, depending on the data set and methods used. We propose a table and a decision matrix to assist in choosing the most appropriate visual aid according to the purpose for which the map is to be used. We conclude that no single radon map is suitable to fit all objectives, and some maps are more suitable than others depending on the purpose