efanet.org

EFA in meetings

U-BIOPRED holds AGM

On the 21st and 22nd of January 2013, the fourth annual general meeting of the U-BIOPRED project took place in Barcelona. U-BIOPRED (Unbiased BIOmarkers in PREDiction of respiratory disease outcomes) is a research project funded by the Innovative Medicines Initiative (IMI), a public-private-partnership between the European Commission’s Seventh Framework Programme for Research and Technological Development, FP 7, and the European Federation of Pharmaceutical Industries and Associations (EFPIA) to understand more about severe asthma.

EFA is part of the project’s work packages that deal with the dissemination of information on the project and its results as well as ethics. For coming months, EFA will be collecting patients’ testimonies on the need to have such a study in the field of asthma and will be collaborating with the European Lung Foundation (ELF) to draft the biannual newsletter of the project. To sign up for the newsletter and receive updates on the project’s developments and resuls, click here.  In addition, EFA members participated in the U-BIOPRED website workshop, which will be fundamental in providing feedback for the legacy of the project once it concludes and for dissemination of results from the project. The U-BIOPRED website will be updated in tandem with the new European Lung Foundation’s website, which could be launched as early as autumn 2013.

EFA was represented by Roberta Savli, EU Policy Officer, and David Brennan, Membership and Programme Officer. Three board members were present in Barcelona to discuss patient involvement in this study and dissemination of the information to different target groups, including the general public and policy-makers.

Conferences in the framework of the Year of Air 2013

EU Environment Commissioner Janez Potočnik has designated 2013 as the European Year of Air (see article in our policy section). In this context, several conferences on the subject have been organised in Brussels. On the 8th of January 2013, the European Environmental Bureau (EEB) organised an event entitled “Clean Air Everywhere: Blowing the winds of change into European air policy”. It included a panel specially dedicated to the effects of air pollution on the health of European citizens and the consequences for the most vulnerable groups in society, such as those suffering from respiratory diseases, were highlighted. On the 30th and 31st of January 2013, the European Commission, the World Health Organisation Regional Office for Europe and the Health Effects Institute organised a workshop on “Understanding the Health Effects of Air Pollution: Recent Advances to Inform EU Policies”. The scientific workshop was followed by a policy briefing at the European Parliament. EFA was represented by EU Policy Officer Roberta Savli.

 

Event at the EP on the future of clinical trials in the EU

On the 28th of January 2013, the Member of the European Parliament Rebecca Taylor hosted an event at the European Parliament on “The Future of Clinical Trials”.  It provided an overview of the Commission’s proposal for a new clinical trials regulation and opened the floor for discussion on the future of clinical trials in Europe. The need for increased patient involvement was highlighted by the panelists. The event was organised by Pfizer and EuropaBio, the European association for bio-industries. EFA was represented by Roberta Savli and EFA member Pim de Boer.

 

EFA participates in Annual Meeting for MeDALL

EFA Board Secretary Per-Åke Wecksell, EFA’s Roberta Savli and Membership & Project Officer David Brennan all attended the annual meeting of the Mechanisms of the Development of ALLergy (MeDALL) project in Berlin on the 14th and 15th of January this year. The MeDALL project, which focuses on investigating the causes of allergy, aims to improve the quality of life of Europeans with allergy. EFA representatives participate in work packages 10 and 11 of the project, on ‘Translational integration of systems biology outcomes into healthcare’ and ‘Training, dissemination and exploitation’ respectively. One of the future activities of work package 10 will be the drafting of a ‘national allergy programme’ template, which can be customized to the needs and contexts of any European country.

The meeting participants provided information on their main achievements over the past year and presented their findings related to early diagnosis, primary and secondary prevention strategies and the development of less expensive treatments. A development of particular interest for allergy patients was mentioned in a presentation on IgE molecular profiling, where it is claimed that for the first time profiles have reacted to reflect a geographical distribution of specific allergy exposures. As a result, the group claims it could be possible to pinpoint specific allergens for each specific national/geographic context. Although most updates were related to methodology and exploitation of scientific studies, there are high expectations that the results of the project will lead to new findings and important progress in the field of allergology.

EFA participates in EPF Seminar on the Role of e-Health for Patients

On January 23rd the European Patients’ Forum (EPF) hosted a seminar on recent developments in e-Health, allowing patients to learn about e-Health issues and make themselves heard on the subject. The question of data in relation to e-Health emerged as central, as speakers repeatedly recommended a new legal basis for health data in Europe as well as increased access to data for healthcare professionals. The point was also made that access to health data should serve to complement conventional healthcare services, not exacerbating inequalities. Robert Mandelin from the European Commission’s Directorate-General for Communications Networks, Content and Technology (DG CONNECT) suggested that research into the concept of how ‘intuition’ can act as a barrier to the wider acceptance of e-Health would be useful. He also said health literacy, sufficient funding for health-related research and the gradual introduction of e-Health mechanisms over time are of central importance.

EFA’s David Brennan, served as rapporteur for a breakout group discussing ‘e-Health and the patient-health professional relationship’. Patients in this group identified ‘trust’ as a necessary pre-condition to the effective use of e-Health. Stakeholders in the session widely agreed e-Health should be used only in cases where mutual consent between a healthcare professional and a patient exists, following a period of traditional healthcare service provision. Without mutual consent, the strong patient/healthcare professional relationship and trust required for e-Health to succeed would not exist.

The group concluded that healthcare system change must come from patients, who in turn must show their desire for and understand the benefits of integrating e-Health.  The EPF event demonstrated that the future success depends on fostering patient involvement, and in turn patient trust.

EFA attends EU Health Prize for Journalists

On the 29th of January, EFA President Breda Flood attended the EU Health Prize for Journalists award ceremony in Brussels. Each year the Prize is awarded to high-quality journalism that is considered to have raised awareness on issues related to health and patient-related initiatives at EU level. This year the topic of active and healthy ageing was integrated into the competition to mark the European Year for Active Ageing and Solidarity between Generations.

The overall winner for 2012 was Petr Třešňák of the Czech Republic, for his article Adventures in ward 114 on the situation in psychiatric hospitals and the vital role nurses can play in helping patient recovery. A special prize for articles on smoking cessation is awarded annually too, and this year’s prize went to Germany’s Tobias Zick, for his article Thick air.

EFA eZine Archive