efanet.org

EFA in Meetings

Innovation in Life Sciences and Health – Vilnius Innovation Forum

On 5th December, EFA Board Member Lina Buzermaniene attended Vilnius Innovation Forum, where she participated in the session dedicated to Innovation in Life sciences and Health. Lina, as a Member of Ethics Board of the IMI U-BIOPRED project, contributed with a short presentation as the patient representative to the panel discussion on Public private collaborations for a stronger research ecosystem. Apart from Lina, other panelists included, among others – Dainius Pavalkis, Minister of Education and Science of the Lithuania and Michel Goldman, Director of the Innovative Medicines Initiative (IMI). Lina spoke mainly about the need of patients’ perspective and their involvement research projects, taking U-BIOPRED as an example. She briefly presented the module called the UBIOPRED Patient Input Platform (PIP) which serves as a platform for people with respiratory diseases to look inside the project and give feedback and advice at all levels of the research process. According to her, all the EU projects should follow U-BIOPRED’s lead in involving patients in the whole process of the projects.

The Innovation Forum was organized by Ministry of Economy of the Republic of Lithuania in cooperation with the Agency for Science, Innovation and Technology. This event was part of agenda of the Lithuanian Presidency of the Council of the European Union.

 

Alpha-1 Quality Standard Working Group meeting in Amsterdam

On December 9th, EFA President Breda Flood attended Alpha-1 Quality Standard Working Group meeting in Amsterdam, invited by the Alpha-1 Europe. The purpose of the meeting was to finalise the Quality Standards of Alpha-1 care and plan how they could be used at both a European and national level.

 

Understanding lung health in Europe

On December 10th, EFA’s Susanna Palkonen and David Brennan attended the event to launch publication entitled Lung health in Europe: Facts & Figures which was prepared by European Respiratory Society (ERS) in collaboration with European Lung Foundation (ELF). The event, which was organized by the European Voice in their Health Check series took place in Brussels, was launching the by, as well as presentation of its newest publication, in collaboration with,. This publication is a handbook for policymakers and the lay public offering a summarised version of the most important findings from the European Lung White Book: Respiratory Health and Disease.

The newest data show that lung conditions are responsible for one in ten of all deaths across Europe, deaths due to lung cancer and COPD predicted to rise over the coming decades. The costs spent by EU countries on lung conditions of its citizens are at least 400 billion euro annually. This and many other topics, including the risk factors tobacco, air pollution or inequalities in access to quality health care concerning respiratory diseases among Europeans, were discussed by the panel, including EU Commissioner for Health Tonio Borg, deputy health minister of Lithuania Gediminas Černiauskas, president of ERS Prof. Peter Barnes and Monica Fletcher, president of the ELF.

Commissioner Borg underscored how only 10 of 28 EU member states have respiratory disease strategies. He argued health protection of EU citizens should pervade all policy and lamented the most recent data demonstrating 600,000 people die per year from respiratory diseases. He announced and invited those present to a Respiratory Disease Summit from April 3rd – 4th in 2014. A panel discussion of speakers on a range of topics, like social and environmental determinants of lung disease, introduced different perspectives to the discussion of why and how chronic lung diseases can be prioritised on policymaking agendas. Klaus Rabe, professor of pulmonary medicine at the Univeristy of Kiel and former ERS president, warned budget cuts in education funding could jeopardise a push towards better healthcare outcome.

Monica Fletcher, the President of the European Lung Foundation, emphasised the “social stigma” of respiratory disease as a distinguishing characteristic for patients which sets them apart from the other disease areas and later commented it could be best to direct some respiratory diseases through primary care to reduce strains placed upon secondary care. The Executive Director of the Health and Environment Alliance (HEAL), Génon Jensen, criticized the lack of action to reduce air pollution even though 2013 was deemed the European Year of Air. Grigorij Kogan, representing DG Research and Innovation, encouraged action in respiratory diseases as the publications presented provide education and awareness tools which can be useful for achieving political goals.

The conclusions are clear, as stated by Prof. Francesco Blasi, previous ERS President, already at the ERS Congress in September when the European Lung White Book was published: “Both the prevention and treatment of lung diseases will need to be improved if their impact on longevity, quality of life of individuals and economic burden on society, are to be reduced in Europe and worldwide.”

 

Patients involvement in the European Medicines Agency

The European Medicines Agency (EMA) held its annual training session for patients and consumers involved its activities on December 10. EFA was represented by EU Policy Officer Roberta Savli and by Mrs. Martine Puhl from our Dutch member, Lungfond. The objective of the training is to explain to patients’ and consumers’ that are involved with the activities of EMA how the agency works, what its mission is and how a better cooperation can be fostered among stakeholders. An overview of the evaluation and post marketing surveillance of the medicines was given, as well as a focus on Scientific Advice (SA) procedures, Scientific Advisory Groups (SAGs) meetings and the review of EMA information (such as package leaflet and the European Public Assessment Report, EPAR). With the same objective of explaining EMA’s functioning to members and, especially, making it easier for them to actively participate in future consultations, EFA is organising training for members on February 18, 2014. We will be able to cover the expenses for 12 members and the places will be allocated on a first come, first served basis.

On December 11, the fourth Patients’ and Consumers’ Working Party meeting of the year took part and EFA was represented by Roberta Savli and by Board member. The objective of the meeting was to discuss all the issues related to the involvement of patients’ organizations in the activities of EMA, focusing on the revision of the framework of interaction, the funding of the organisations and the EMA policy on conflict of interest. Topics such as the pharmacovigilance and the involvement of patients in the Pharmacovigilance Risk Assessment Committee (PRAC) experience were presented, together with important projects like the European Patients’ Academy on Therapeutic Innovation (EUPATI) and Accelerated development of vaccine benefit-risk collaboration in Europe (ADVANCE). The programme of the event is accessible here.

 

Regional Conference on Patients’ rights in cross-border healthcare

On 10th and 11th December, EU Policy and Programme Intern Jan Meissner attended Regional Conference on Patients’ rights in cross-border healthcare. This event was organised by European Patients’ Forum (EPF) for the patients’ representatives from Belgium, France, Germany, Luxembourg and Netherlands to inform them about the newly entered into force EU Directive on Patients’ Rights in Cross-Border Healthcare (we informed you about this legislation in the October issue of our eZine).  The first day was divided into two parts – theoretical & practical. The theoretical part consisted of introduction to the topic both from European Commission’s perspective as well as patient’s perspective. The practical part was divided into two parts: 1) the participants were discussing how they would like the National Contact Point to look like (the Belgian National Contact was presented as an example); 2) the participants were divided into small working groups that were discussing different parts of the patient journey in cross border healthcare. Outcomes of these workshops concluded the second day of the conference along with further presentations by distinguished speakers on the topic. More information on the event, including programme and presentations, is available here.

 

Working Day on Severe Asthma

On 12th December, Giorgio Salerni from FEDERASMA, Italian member of EFA, spoke on our behalf on the Working Day on Severe Asthma organized by the Local Health University Hospital of the Tuscany Region which took place in Firenze. Giorgio gave presentation on Appropriateness of severe asthma management – national and European experiences, where he spoke about EFA’s engagement in the allergy awareness, participation in the projects funded by the EU and about the specifics of the Finnish National Programme. He will report on the meeting in our next ezine.

 

GAMIAN Europe – annual price for significant contribution for mental health

Susanna Palkonen attended as EPF Vice president the GAMIAN Europe launch for their annual price for significant contribution for mental health in Europe. This year’s winner was Dr Matt Muijen from WHO, key leader behind the WHO Action Plan and strategy on Mental Health.

EFA eZine Archive