EFA has been busy racing around over the last few weeks (literally!). We participated in the the ELF Lung Run, hosted a stand at the ERS World Village in Vienna, took part in the EMA Patient and Consumer working party, attended a ‘patient think-tank’, received training in health technology and participated in a meeting on paediatric medicines.
Wrap-up of EFA at the ERS Congress 2012 in Vienna – EFA in World Spirometry Day (WSD) 2012 Lung Run and ERS World Village
On the morning of Sunday the 2nd of September the European Lung Foundation’s 5k Lung Run was held, offering participants at the European Respiratory Congress the opportunity to compete in a five kilometer race to kick-start their participation at the 5 day event. EFA (bravely!) decided to participate and was represented by two runners, staff member David Brennan and EFA Board Secretary Per-Åke Wecksell. One of the other competitors was Norwegian Olympic gold medalist in rowing, Olaf K. Tufte, who has lived and competed as an athlete with asthma for most of his life.
Also during the Congress, as during most previous ERS Congresses, EFA held a stand at the ERS World Village, where staff and Board members disseminated EFA brochures and copies of the EFA Book on Respiratory Allergies. On the same Sunday as the Lung Run, EFA participated in the launch of the European Lung Foundation’s Patient Ambassador Program (EPAP). EPAP is a dynamic and innovative approach to educating patients and carers through online learning. It is designed to help patients and carers in Europe understand healthcare research and guidelines and provide them with the tools they will need to participate in advocacy and media activities at any level. Although EPAP is not yet completed it represents a new and exciting approach to health literacy, as the launch event confirmed.
EFA attends European Patients’ Forum ‘Policy Advisory Group’
On the 12th of September, the Policy Advisory Group (PAG) of the European Patients’ Forum (EPF) met to discuss the latest EU policy developments influencing the lives of patients in Europe. EFA was represented by Roberta Savli. Amongst the several subjects discussed was the proposed revision of the Clinical Trials Directive (which aims to foster the EU as a hub of clinical research by revamping rules on medicine trials), the proposed Transparency Directive (which aims to allow medicines enter the market faster) and the upcoming revision of EU regulation on medical devices.
EFA at HEAL AGM and elected to Executive Committee
On the 13th and 14th of September, the Health and Environment Alliance (HEAL) held its Annual General Assembly (AGA). EFA was represented by Roberta Savli, who also ran for the HEAL Executive Committee and was elected. This will help to increase patient visibility in the field of health and environment and allow EFA’s voice to be heard by a wider audience. The AGA was followed by two open policy workshops: the first on the link between air pollution and health, and the second on endocrine disruptors (EDs) – chemicals that interfere with endocrines in the body and can cause various disorders including cancer. The first panel took place in the context of the current revision of EU legislation on air quality, and looked forward to the ‘European Year of Air’ that has been proposed for 2013.
EFA in HTA Patient Academy
On the 24th to 26th of September 2012, Roberta Savli participated in a training course entitled “Health Technology Assessment in Health Care Decision Making”. This three-day course was held in London and was jointly organised by the London School of Economics and Political Science and the European Federation of Neurological Associations (EFNA). During the training, patient representatives were introduced to the process of health technology assessment and learnt how they can be actively involved in the decision-making procedure.
EFA at the European Bioindustry exchange forum
On the 13th of September David Brennan represented EFA at the European Association for Bioindustries (EuropaBio) exchange forum meeting in Brussels. EuropaBio represents the European biotech industry, which uses living organisms to make healthcare products (e.g. vaccines), agricultural products and industrial products. The forum gathered representatives of patient associations as well as EuropaBio members. Special guest Dr. Sue Pavitt, lecturer and researcher at Leeds University, explained why patient involvement is increasingly central to the success of clinical trials, and discussion topics ranged from the benefits of patient participation to the specific ways in which patients can help researchers and physicians overcome obstacles in clinical trials. Representatives of TiGenix, a EuropaBio member, spoke about the challenges facing industry in effectively implementing the Clinical Trials Directive (currently under review), drawing particular attention to the issue of the separate clinical trial authorisations (CTAs) that are required from different national clinical authorities (NCAs) in each European country.
EFA at the EFPIA Patient Think-Tank
On Friday 28 September, the European Federation of Pharmaceutical Industries and Associations (EFPIA) hosted its Think-Tank with patient organisations in Brussels, at which EFA was represented by David Brennan. The meeting was an opportunity for patient associations and pharmaceutical companies to discuss their respective priorities as well as share perspectives on EU legislation in order to help industry to be more patient centred. Among the various topics discussed were the revision of the Clinical Trials Directive, patient involvement in the current and future legislation on research and development and the proposed revision of the Tobacco Products Directive. In addition, participants discussed the topics of stem cell research and animal testing, comparing the ethical issues of both.
EFA in other meetings
Susanna Palkonen attended the EPF board meeting and funding partners briefing on the 13th of September. She also attended on behalf of the EPF the EMA PCWP joint meeting with the EMA Health Care Professionals Working Group on the 24th and 25th of September in London, and was invited to present on how EPF disseminates information received from the EMA. Afterwards she took part in a conference on developing medicines for children that looked into what has been learned from implementing the EU regulation on paediatric medicines and the need for adaptation. This regulation obliges any company applying or renewing marketing authorisations for a medicinal product to present a plan for investigating the use of the medicine in children if needed. In connection, she also spoke briefly to an industry-based audience in a Key Opinion Leader Management conference on engaging with patient opinion leaders.
EFA Board Member Lina Buzermaniene also attended the above meeting at the EMA and on the paediatric medicines. She will report in more detail in our next e-News.