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Call for guidelines for all processes of breast cancer care

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Results

Fifty-five guidelines were submitted within the deadline.

Considering that there were five duplicates in the guidelines submitted, a total of 50 guidelines potentially eligible for inclusion in the guidelines platform were obtained via this call.

Within 6 months the guidelines collected (1) via the search performed by CCIb and (2) via this call will be evaluated for their compliance to the AGREEII criteria plus the pre-declared additional ones (existence of the updating plan and existence of a clearly identified contact/responsible person). This evaluation will be performed by an external service provider selected based on open tendering process.

Upon conclusion of the evaluation phase, guidelines developers having submitted guidelines via the call will be individually informed on the decision of inclusion/exclusion of their guidelines. Only the accepted guidelines will be listed on this website, and no reference will be made on the rejected guidelines. The guidelines' ownership will remain with the respective guidelines developer as well as copyright and IPR. The Commission will request permission to host or provide a link to the original guideline in question. The ownership of the guidelines will be also clearly stated in the website.

The Guidelines Platform and overall report will be publicly available starting from 2017.

 Call Details

The ECIBC Guidelines Platform will contain guidelines and recommendations developed outside the ECIBC for all breast cancer care processes. This call is organised along the transparency and inclusiveness policies of the ECIBC and aims at complementing the search for evidence-based guidelines already performed (explained below) and targets guidelines developed by - including, but not limited to - guidelines developers, scientific community, national and international professional societies.

The Platform will provide the evidence-base for the requirements and indicators of the European Quality Assurance scheme for breast cancer services. The guidelines / recommendations for breast cancer screening and diagnosis will be developed by the Guidelines Development Group (GDG). However, the GDG does not have a mandate to develop guidelines for other processes of breast cancer care apart from screening and diagnosis, hence other sources for recommendations are needed.

The search for evidence-based guidelines has been performed until March 2016, using available medical and guideline databases, by a service provider (Iberoamerican Cochrane Collaboration). Please be aware that the listed databases and stakeholders' websites have been searched and evidence-based guidelines identified and collected from these sources.  

Clinical and public health guidelines on all breast cancer care processes (including, but not limited to screening, diagnosis, treatment, rehabilitation, follow-up and palliative care) fulfilling the specific criteria detailed in the online tool used for this call (EU Survey) can be submitted.

All guideline developers, scientific community, national and international societies, and other entities that have produced trustworthy guidelines [1] on breast cancer care in the last ten years are invited to self-assess compliance of their guideline(s) with the eligibility criteria detailed here. After having done so, if appropriate, applicants are warmly encouraged to propose their guideline(s) for inclusion in the ECIBC Guidelines Platform.

Please notice that at this stage all information collected with this call will be handled in a strictly confidential manner, and only the European Commission, and the subjects acting on its behalf under strict confidential rules, will have access to the data submitted.

Prior to inclusion in the ECIBC Guidelines Platform, the developers and owners of submitted guidelines fulfilling the eligibility and selection criteria and quality evaluation (with AGREE II-tool or equivalent), will be contacted by the JRC to clarify the Intellectual Property Right (IPR) aspects.

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[1] Trustworthy guidelines are:
      - based on a systematic review of the existing evidence;
      - developed by a knowledgeable, multidisciplinary panel of experts and representatives from key affected groups;
      - considerate of important patient subgroups and patient preferences, as appropriate;
      - based on an explicit and transparent process that minimises distortions, biases, and conflicts of interest;

      - clear in their explanation of the logical relationships between alternative care options and health outcomes
      - rated in terms of both the quality of evidence and the strength of the recommendations;
      - reconsidered and revised as appropriate when important new evidence warrants modifications of the recommendations.

Source: IOM (Institute of Medicine). 2011. Clinical Practice Guidelines We Can Trust. Washington, DC: The National Academies Press

          

 More details

Frequently asked questions

1.  This Commission website is public or restricited?

This Commission website (ECIBC web hub) is public and thus open to everyone. A special structure (the Guidelines Platform) will be developed to host the guidelines/recommendations. The guidelines collected are foreseen to be grouped according to the clinical care process (e.g. diagnosis, treatment, follow-up etc.), and the same guidelines may be included in several care processes. In addition, a search engine (e.g. by keywords) will be developed on the Guidelines Platform to facilitate the retrieval of guidelines and specific recommendations within them.

2.  Will the Commission rank guidelines?
The Commission will only accept or reject the guidelines, and no ranking of the guidelines will be presented on this website.

3.  Will both accepted guidelines and rejected guidelines be listed on the site?
Only the accepted guidelines will be listed on the ECIBC web hub, and no reference will be made on the rejected guidelines. The data submitted will be handled by strict confidence. In the publication of the call a sentence addresses this aspect: "Please notice that at this stage all information collected with this call will be handled in a strictly confidential manner, and only the European Commission, and the subjects acting on its behalf under strict confidential rules, will have access to the data submitted."

4. Will guidelines be rejected if just one criterion is not fulfilled e.g. lack systematic methodology?
The criteria selected for guidelines to be included in the Guidelines Platform are those based on Institute of Medicine. Clinical practice guidelines we can trust 2011 [cited 2015 Jul 8], available here. These criteria can be considered as gold standards for trustworthy, sustainable and high-quality quidelines. However, at this stage all guidelines developers are encouraged to submit their guidelines for considereation, even if they may not fulfill all the criteria. In some cases, guidelines/recommendations are based on best clinical practise (e.g., when no data from clinical studies are available) however, may still be considered as evidence-based.

5. Who will own the guidelines once they have been submitted?
The guidelines' ownership will remain with the respective guidelines developer as well as copyright and IPR. The Commission will request permission to host or provide a link to the original guideline in question. The ownership of the guidelines will be also clearly stated in the website. If copyright or IPR needs should be detected by JRC at the following stages, an individual request to the concerned guidelines developer will be done.

6.  Will any annotations or comments be presented with the guidelines?
The guidelines will be presented with clear information on the respective developer. No annotations or comments are foreseen to be associated to the guidelines. If any kind of additional text should be needed, it will be first agreed with the respective guidelines developer.

7.  What is the goal in having potentially several guidelines on treatment on this website when the project is apparently not aiming to set treatment recommendations?
The ECBIC is taken forward by the Commission's Joint Research Centre (JRC) based on an agreement with the Commission's Directorate-General Health and Food Safety (DG SANTE). This project aims at ensuring and harmonising quality of breast cancer services across European countries based on the available evidence and the application of a person-centred approach, starting from the development stage. ECIBC covers all care processes, treatment included. The Guidelines Platform, while highlighting the very useful work done by developers, aims at providing a useful tool for stakeholders. In addition, the Guidelines Platform will be one of the sources of evidence for the European QA scheme, one of the main pillars of the ECIBC, aiming at ensuring quality of care through the whole pathway (from screening to end-of-life care, hence including treatment).
The key principle to include all high-quality evidence-based guidelines on the website is to be as inclusive and comprehensive as possible. Some recommendations concerning treatment may be very well described and based on systematic reviews in a guideline, while recommendations on another part of treatment may be detailed in another guideline.    

8. If the site is public, will it be possible to direct comments or criticisms about guidelines to the EC and, if yes, who will answer?
The ECIBC website is currently already open and we are already receiving questions concerning the ECIBC activities which are handled at individual level. Fequently asked questions (FAQs) will soon be collected in the website in a dedicated section currently under development.
The comments and questions on the guidelines collected on the platform will be handled by the JRC when they concern general aspects of the platform, in coordination with the respective guidelines contact person in those seldom cases when a question may focus on a single guideline/recommendation. For this reason, only guidelines associated to a secured contact person will be accepted.

9. Does the Commission intend to set up similar portals for other malignancies?
At present the Commission focuses on breast cancer. However, application of the ECIBC design for other common cancers or other diseases may be possible.

10. National and regional authorities already ask and collect  guidelines. Why does the Commission do it as well?
The Commission considers that the use and dissemination of high-quality guidelines is valuable whether it is done at European level (as e.g. with the ECIBC Guidelines Platform) or at National/local level, as it contributes to improvement of quality of care.
The ECIBC aims also to minimise the efforts at local level and avoid duplication of work when evidence is the same across borders.