The Joint Research Centre (JRC) provides some background information on the European Commission Initiative on Breast Cancer (ECIBC).
European Commission Initiative on Breast Cancer (ECIBC) is a person-centred initiative to improve breast cancer care. Through ECIBC, The European Commission’s Joint Research Centre is working to the most up-to-date evidence-based recommendations on screening and diagnosis, with a platform of guidelines for the whole care pathway and an associated quality assurance scheme.
While the European Commission Directorate-General Health and Food Safety (DG SANTE) has the policy leadership on the EU health related policies aiming to protect and improve public health and is taking forward several initiatives on cancer, including ECIBC, the JRC co-ordinates the technical and scientific aspects of the work ensuring synchronisation of all the initiative’s objectives. The JRC also provides the outsourced supports, the collaborating tools and logistics for the ECIBC working groups and other involved stakeholders. JRC also ensures appropriate communication with other EC services or working/expert groups in areas relevant for the project.
Here, the JRC team provides some background information on this important initiative.
How would you characterise the current landscape of breast cancer care in Europe today, and how does/will European Commission Initiative on Breast Cancer (ECIBC) help that to evolve?
Breast cancer is still the most common cancer among women in the EU: data from the European Cancer Information System (ECIS), managed by the European Commission’s Joint Research Centre (JRC), indicates that more than 400,000 new cases were diagnosed in 2018. Moreover, there are inconsistencies between incidence and mortality rates in some countries where mortality is higher than the European average despite a lower incidence. At a recent conference, co-organised, among others, by the Central European Cooperative Oncology Group, experts highlighted a considerable difference in the in the five-years survival rate for breast cancer that could be as high as 25% between eastern and northern countries in Europe. This may depend on many factors, including quality and access to care.
Therefore, ECIBC seeks to improve the approach to breast cancer screening and care across all of Europe. It is based on the latest scientific evidence available to ensure essential levels of quality of care to be equally accessible by all women independent of the country where they reside. ECIBC informs not only breast cancer centres and health care professionals, but also women, patients and their families about the latest European recommendations on breast cancer screening and diagnosis.
When the European quality assurance scheme is finalised – which is expected to happen in 2020 – stakeholders should feel reassured that those breast cancer centres adhering to the scheme offer quality ensured diagnosis and treatment.
What are the main goals of the ECIBC? What have been the biggest challenges encountered thus far?
The ECIBC started its activities in 2015 with the objectives of improving the quality of breast cancer care and reducing the inequalities in accessing care across all of Europe. The ECIBC project has been established by the European Commission’s Directorate General for Health and Food Safety and the JRC is steering the project.
This shall be achieved through two main instruments:
- The development of guidelines on breast cancer screening and diagnosis based on the latest scientific knowledge available. The ECIBC Guidelines (European Breast Guidelines) review and update the previous 2006 European Guidelines for Quality Assurance in Breast Cancer Screening and Diagnosis, reflecting the latest scientific developments (including technologies and methodologies).
The recently-published recommendations, for example, give a clear indication on when and how often women at average risk of breast cancer should attend screening, the most suitable way to invite women to attend screening (also considering vulnerable groups), or which type of screening or diagnostic examination should be provided. Later this year, a series of recommendations on how to communicate screening results and diagnosis to women will follow. By February of this year, a total of 40 recommendations were accessible on the project website and are presented according to three different profiles: women and patients, healthcare professionals, and policymakers.
- The development of quality criteria defining essential requirements for quality assurance that breast cancer services need to fulfil when implementing ECIBC along the care pathway. These criteria will advise on procedures and approaches in areas such as communication, training of professionals, diagnostic practices and treatment options. All these criteria will be included in a quality assurance scheme to be released in 2020.
The ECIBC project is the first of this type undertaken by the Commission and may serve as a blue-print for other diseases in future, such as colorectal cancer or other pathologies. Given the pioneering nature of ECIBC and the challenges faced, whilst also considering the need to be aligned with related activities and, thus, the lessons learnt, will influence the design of any subsequent activity. Consequently, an international workshop took place in June 2018 to discuss and to prepare for the methodological framework, currently being developed, for colorectal cancer that takes into consideration all the challenges encountered and lessons learnt during the breast cancer initiative.
One of the major challenges is common to all European projects and policies: addressing the 28 EU Member States and other European countries (in total 35) with peculiarities and unique characteristics requires continuous efforts towards flexibility and inclusiveness. ECIBC is meant to be applied broadly in order to truly impact healthcare quality across Europe, it therefore needs to be flexible and adaptable to national and local contexts.
ECIBC guidelines are developed by an expert working group (the Guidelines Development Group, GDG) using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) methodology and the evidence is synthesised and presented using the GRADE Evidence-to-Decision (EtD) framework, granting complete transparency about the process followed for each recommendation. The Etds also provide information about research gaps, priorities and implementation issues.
The topics to be covered are identified by the GDG, at the beginning of the Guideline activities, through the definition of so-called ‘health care questions’, which have been judged as relevant to cover the screening and diagnosis of breast cancer. The GDG then issues recommendations in reply to the health care questions. However, the lack of quality evidence on some specific topics is sometimes a challenge. For example, for some innovative technologies, such as tomosynthesis (an imaging technique that can be used to screen for early signs of breast cancer in women with no symptoms), the healthcare question prioritised by the GDG, and the available evidence found to answer the question did not allow the topic to be fully evaluated.
In such cases, the GDG experts provided research priorities and implementation considerations to highlight for policy makers what evidence is required to make more informed decisions, such as the needs for increased data storage for screening programmes if tomosynthesis is used, or the fact that it is important to educate women and health professionals on the radiation risk.
How do you ensure that the work you do is informed by the views of women/patients?
The ECIBC working groups include health care professionals as well as patients and patient advocates who participate in every phase of the discussion and development of both the guidelines and the quality assurance scheme, such as Europa Donna – The European Breast Cancer Coalition.
Healthcare questions and outcomes that are relevant for women and patients are prioritised. ECIBC has issued a large number of recommendations focusing on communication strategies. One example is on the use of decision aids containing information about the balance of benefits and harms of mammography screening in order to empower women to make an informed decision. Other recommendations aim to increase equity and ensure equal access to breast cancer screening programmes. They focus on specific communication strategies to address vulnerable populations such as non-native speakers, women with intellectual disabilities, or those who are socially disadvantaged.
ECIBC has been presented to patient associations or initiatives and has benefited from the valuable feedback received there.
Moreover, Europa Donna has created a booklet to provide ambassadors active in the field with knowledge required to advocate for the implementation of the European guidelines and quality assurance scheme, hence to advocate for quality breast care. With the booklet Europa Donna has already organised direct training on ECIBC implementation at their annual advocacy training course and at the Advocacy Leader course.
Have these viewpoints highlighted any areas that were unexpected?
The support form patients’ organisation was crucial here, as it was with regard to designing and rephrasing, in lay terms, recommendations published on the ECIBC website for the patient profile.
How important is feedback for ECIBC? How will you obtain the necessary feedback and how will this be used to inform progress moving forwards?
ECIBC is built over a continuous exchange with health care professionals and representatives from all countries involved. Several calls for feedback were posted on the ECIBC website in the recent years, the outcome of which was considered during the activities of the various working groups. Moreover, the publication process foresees that new guidelines are published on the ECIBC website immediately after approval by the expert working groups, even if many others of the project are still in development. This allows immediate feedback from user groups.
Our ultimate goal is to propose a model of care for breast cancer that is feasible and impactful in all the different European regions.
ECBIC is described as a sustainable initiative. How is this achieved, and how can you ensure that the necessary resources to maintain a continual update will be in place?
As ECIBC is web-based, any single recommendation can individually be updated and published online, without the need to update the entire guidelines or to release ‘new paper edition’. This approach allows for very tailored and an easier updating process, overcoming the limits of past European guidelines from 2006.
The updating strategy has consequently been developed following a systematic approach that allows prioritising the recommendations to be updated and highlighting areas where the need for new recommendations arises.
For over three decades, the European Commission has continued to work with Member States and stakeholders to build a solid network of expertise to fight cancer across the EU, including helping Member States and stakeholders to translate into concrete actions best practices and recommendations to tackle breast cancer. The JRC is currently evaluating joining forces with other European cancer entities to guarantee the future management, the regular updating, and the sustainability of the ECIBC after its release.
Is there scope to expand ECIBC beyond the current 35 countries? Or perhaps to translate the guidelines into non-EU languages? Do you have any other hopes for the future?
The ECIBC has the support of 35 countries in Europe by participating in the ECIBC expert working groups, which already exceeds the borders of the EU. Moreover, after the release of the first recommendations in November 2016, national guideline developers and/or screening programme organisers of several countries (e.g. Czech Republic, Estonia, Greece, Italy, Slovakia Spain, United Kingdom from the EU, as well as Armenia, Brazil, China, Macedonia, Malta and Tunisia) have expressed their interest to either implement and/or adopt/adapt ECIBC recommendations or to use the same methodology. Examples where ECIBC guidelines have already been implemented in national programmes/activities are Bulgaria, Bahrain and Tunisia.
Much more needs to be done to challenge cancer at source, through prevention and health promotion, targeting smoking, alcohol, diets, and exercise. The EU’s new Steering Group on Health Promotion, Disease Prevention and Management of Non-communicable Diseases, including cancer, is central to tackle cancer through prevention and health promotion. The Steering Group identifies Member State priorities, and offers evaluated best practices that can be transferred, scaled up, and implemented with EU support including the translation of ECIBC recommendations into concrete actions in Member States.
ECIBC is moving towards its completion, planning its roll-out in 2020. Meanwhile, activities have already started to prepare for the development of guidelines on colorectal cancer, the second most commonly diagnosed cancer and the second leading cause of cancer-related deaths in Europe.
Joint Research Centre (JRC)