Last week EBC held its final Board Meeting and General Assembly of 2017. It was a full two days starting with the Digital Health event at the European Parliament, and leading into the election of the new Executive Board on the evening of the 22nd (results below). The day continued over the EBC Board Dinner, which  served as a continuation for the event held prior and included three speakers on eHealth.

The two days of meetings continued the following day with the General Assembly, which produced an exciting amount of fruitful feedback and discussion of EBC’s current and planned activities moving forward. The main outcomes are shared below.

Main Conclusions and Action Points: 

Delegates to the Board and General Assembly of the European Brain Council (EBC) met on 22^nd-23^rd November to elect a new Executive Board, discuss current issues on EBC’s agenda and decide on the future direction of the organization. On this occasion, the following decisions were adopted:

Election of the new Executive of EBC

• The following Officers were elected by the Board:
  • President: Prof. Monica di Luca
  • Vice-Presidents: Prof. Wolfgang H. Oertel
    Prof. Patrice Boyer
  • Treasurer: Joke Jaarsma

Overall Conclusions and Core Actions

• EBC’s progress with regard to various projects and advocacy issues was discussed and endorsed:
  • The “innovation agenda” under which EBC will initiate work towards a revision of the EMA-guidelines, (2) respond to the consultation on Supplementary Protection Certificates and (3) continue the GOLUP-campaign, was confirmed.
  • The establishment of the “Value of Treatment” project in a continued fashion was approved. Delegates also looked forward to developing new case studies and/or carrying on disseminating the results and outcomes of the VoT white paper published in June.
  • EBC’s plan to apply for Horizon 2020 calls was positively received, particularly those related to brain research coordination and health technology assessment.
  • Plans for organizing an event in view of the 9^th Framework Programme for Research, with the aim of raising awareness of the importance of including “Brain research” specifically as one of the missions, were positively received.

• A few policy documents, submitted for consideration, were endorsed:
  • The “Digital Health Society Declaration”
  • The statement “Prioritising patient safety and public health across Europe post-Brexit”
  • The “Call to Action on Migration and Health”
  • The “Call to Action to enhance labour opportunities for people with chronic diseases” (with an accompanying letter to be provided to the European Chronic Disease Alliance (ECDA) which authored the document)
  • The joint statement on “medical training and professional development for patient safety”

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The European Brain Council is glad to announce the launch of the website related to the Good Off-Label Use Practices (GOLUP) Declaration.

Off-label use is the practice of using a medicine outside its authorized indication. It plays an important part in some medical areas, since it can be of benefit to patients when no other treatment option is available. However, the current trend of promoting the prescription of medicines off-label for reasons other than the medical need of patients is creating unnecessary risks for patients.

A number of organizations, including EBC, are convinced that there is an urgent need for a clear approach on the issue at European level and for this reason they are supportive of the GOLUP Declaration, which provides a clear framework on when and how the off-label use of medicinal products could safely take place.

Our proposal does not intend to limit the off-label use, but aims to provide a harmonized approach for its occurrence in order to maintain the highest levels of patient safety and minimize any adverse events. The criteria identified reaffirm that patient safety should always prevail over considerations of cost and physicians should be supported by the public bodies and authorities responsible for the approval and use of medicines whose role is to protect public health. Physicians need to be given the freedom to uphold their pledge towards their patients to act ethically and put the patient’s interest first.

To find out more about this initiative and the Declaration, please visit our website.

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