FAQs on ECIBC
01. What is the issue?
The European Commission, upon the request of the Council of the EU (formed by EU Member States governments’ Ministries), is developing the “European Commission Initiative on Breast Cancer” (ECIBC): a person centred action that will strongly impact on breast cancer care in Europe.
Our four 4 specific objectives are:
• evidence-based recommendations: the European Guidelines for Breast Cancer Screening and Diagnosis (European Breast Guidelines);
• a Platform of guidelines (Guidelines Platform) covering all care processes, from screening to end-of-life care;
• a voluntary European Quality Assurance Scheme for Breast Cancer Services (European QA scheme);
• European template of training on digital mammography for professionals.
ECIBC is supported by two working groups composed by medical doctors, researchers, patients and health authorities’ representatives, who joined on a voluntary basis. You can “meet” the members of the working groups in their specific pages: the “Guidelines Development Group” (GDG) and the “Quality Assurance Scheme Developing Group” (QASDG).
ECIBC is coordinated by the Commission’s Joint Research Centre (JRC), based on an agreement with the Commission’s Directorate-General for Health and Food Safety (DG SANTE) which holds the policy leadership in health related matters.
02. Why breast cancer and not the other type of cancers?
The Council of EU aims to reduce the burden of cancer. But breast cancer requires rapid action: it is the most common cancer in Europe. It is the most deadly cancer in women: 1 out of every 6 women with cancer will die from breast cancer. In addition, incidence and mortality rates for breast cancer widely range across countries suggesting the presence of major inequalities, including diverse quality of care. Hence, the EU institutions recognised there is considerable potential to reduce the burden of such cancer and inequalities at European level.
But EU takes action also to tackle other cancers, diseases and health related issues. At the JRC we are in particular engaged in working on rare diseases and for the establishment of a European Network of Cancer Registries. Moreover ECIBC is designed to be a model that in future will be possibly used to create quality assurance requirements to be use by services caring for other cancers, such as for example colorectal cancer.
03. What is breast cancer?
04. Which is the working method?
The working groups’ members discuss and draft the European Breast Guidelines and the European QA scheme either from “remote”- within virtual working environments - either face to face in meetings organised, generally, every three months.
The documents drafted by the Working Groups are then subject of open Calls for Feedback launched online. The Calls remain open for at least three weeks. The feedback collected is then again object of internal groups’ discussions until consensus is reached and the draft finalised.
05. What are the Guidelines?
Among the ECIBC’s objectives there is the development of European Guidelines for Breast Cancer Screening and Diagnosis (European Breast Guidelines) based on most up-to-date knowledge and evidence, covering the first two steps of breast cancer care (screening and diagnosis).
These European Breast Guidelines will:
1- provide women and healthcare providers with clear, objective and independent guidance on breast cancer screening and diagnosis, and
2- guide healthcare managers and policy-makers when planning and organising services for breast cancer screening and diagnosis.
For the successive steps of care (treatment, rehabilitation, follow-up & survivorship, palliative care), a Platform for breast cancer guidelines is being developed to host existing high quality and evidence-based recommendations.
For more detail on guidelines please visit the dedicated FAQs section.
06. What is the Quality Assurance Scheme?
ECIBC is developing a Quality Assurance scheme for Breast Cancer services (European QA scheme) which will set the requirements covering every step of breast cancer (from screening to palliative care) based on the best available scientific evidence.
The European QA scheme puts the person’s need and sensitivity at the centre of its scope and therefore will be designed to include, beyond clinical recommendations, aspects such as patient values, communication needs and support. The European QA scheme will be piloted in 2017 in selected breast centres around Europe to undergo a deep assessment on its functioning in different context and circumstances to correct potential weakness. Then it will become available to all on voluntary basis. The breast cancer services wishing to adhere to it will have to demonstrate the capacity to attain its requirements.
Once the European QA scheme will be operative, you will find on this website an updated list of those breast cancer services compliant to the requirements.
07. How this initiative will help European women?
Breast cancer is the most common cancer in Europe: it is the leading cause of death from cancer in women in Europe (92 000 deaths in 2013 in the EU, EUROSTAT). But mortality rates still differ greatly across European countries and not always in proportion to incidence rates. Discrepancies in mortality rates are associated also to inequalities of care that must be corrected by the wider application of evidence-based guidelines and quality assurance schemes (QA scheme).
Once the European QA scheme and the European Breast Guidelines will be publicly available on this website they could be easily used by patients and professionals.
On this very website women will find user-friendly information on where to go and how to receive care compliant with the most up-to-date European standards. Professionals and policy makers will find the most updated care standards for breast cancer screening and care, with associated tools and reference documents, most updated evidence based guidelines and, the digital screening training template to offer to professionals.
08. I am a general practitioner, how can I help my patients through ECIBC?
09. I am a patient / someone in my family has breast cancer, how can I help her?
The European Commission supports and coordinates ECIBC aiming to reduce the burden of breast cancer and inequalities of care. However, the European Commission does not have a mandate to recommend any type of treatment for breast cancer in any of the EU Member States.
If you, or someone you know, have been diagnosed with breast cancer, you may find in this page some useful links but you should go to your doctor and seek there the information you need.it is important to find out what to expect from services, get information, practical advice and support where you live while waiting for the European QA scheme to be publicly available.
Once the European QA scheme will be operative, you will find on this website an updated list of those breast cancer services that demonstrated their compliance to the requirements.
10. How ECIBC will improve the current situation?
ECIBC will provide high quality, evidence-based support for healthcare providers and health policies for breast cancer. In developing this Initiative, patients’ associations are involved in all aspects, permitting the future outcomes to be truly person centred. The requirements for the accreditation scheme will address patients’ needs: the feedback from citizens will be an essential element to be kept into account for preventive or corrective actions, for example via certification schemes requirements asking for the systematic collection and follow-up of breast cancer services users' views.
The completely restructured, dynamic, modular, web-based European Breast Guidelines will have intelligent navigation and search options to mimic the patients’ walk-through the care stages.
This website will host information for citizens and stakeholders, dynamically incorporating feedback received from users.
11. Is the European Commission competent on health?
12. This Commission website is public or restricted?
The ECIBC web hub is public and thus open to everyone. The evidence based recommendations, grouped according to the clinical care process (e.g. diagnosis, treatment, follow-up etc.) will be publicly available on ECIBC.
13. Does the Commission intend to set up similar portals for other diseases?
14. The ECIBC concept paper is dated 2015, will there be a new edition?
15. How do you deal with possible conflict of interests?
The issue of potential conflict of interests is addressed methodically and rigorously: At the stake there are the reputation and validity of the whole Initiative. Conflicts of interest are dealt with along the Commission rules. And in particular, within ECIBC potential conflicts of interests are managed according to the rules of procedure.
Every working group member declares annually interests and those declarations are publicly available the respective team page. Based on those declarations, JRC performs a global evaluation to ensure that no unmanageable conflict exists. Moreover a specific declaration of interests is completed before each meeting addressing topics included in the agenda: if a potential conflict is detected, the expert may be requested to abstain from discussion and voting.
On top of this, and with the aim to maximise the independency of ECIBC, indirect measures are also taken: for instance systematic reviews, searches, feasibility studies, etc. are outsourced, and documents and databases are normally collected in a transparent way via open calls.