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Annual EFA training for members on the EU coming up in October

“Meet and Greet the EU Institutions” is EFA’s annual training available for members on the functioning of the European Union and its policies that affect people with asthma, allergy and COPD and how to use EFA membership on getting involved and having impact. This year, the training will take place on the week of 13th-17th October (the exact days to be confirmed) and will focus on the new European Parliament and European Commission. The “Meet and Greet 2014” combines basic and advanced training to participants.

Beginners will learn about:

(1)    composition, powers and functioning of the newly elected European Parliament and the European Commission;

Meet & Greet 2013
EFA Members during the Meet and Greet the EU Institutions training, 2013

(2)    the main developments in the health policy at the European level; 

(3)    EFA’s collaboration with other Brussels’ stakeholders.

Together with advanced participants, the beginners: (4)    will be introduced to EFA’s Communication Strategy; (5)    will meet and greet key actors from the various organisation, as well as Members of the European Parliament from their home countries. Through interactive practical activities and a workshop, all participants will gain deeper understanding of current key topics in public health, such as mobile health and medical devices, as well as European decision-making processes. All members that are willing to participate should apply by September 15th 2014.  


EFA Member Longfonds contribution to patients’ involvement in research

EFA is pleased to inform that Truus Teunissen, patient advocate and researcher from EFA’s member Longfonds, a Dutch Lung Foundation, successfully published her doctoral thesis on the involvement of patient advocates and groups in lung research and health policy, in order to demonstrate the added value of patients’ contributions to scientific research. This research followed a responsive evaluation design that supports the mutual understanding of participants and includes all concerns and issues into the research process. This approach of focusing on stakeholders’ perspectives was applied in a seven-year lung patient involvement process hosted by Lung Foundation Netherlands (LFN) on patient participation and perspective and resulted in three main findings: 06. EFA Members News.pdf 

1)      Dr. Teunissen was able to identify 35 relevant issues for patients such as information, diversity and lifestyle. 13 of which, such as education, alternatives and relevance, have not yet been addressed in primary research sources;

2)      She developed a set of six “appraisal and evaluation criteria” that can be used for the evaluation of involvement activities, research proposals and guideline development in the fields of research and quality of care. This is key to determine wether the aforementioned 35 issues are met;

3)      The idea of partnership between healthcare professionals and patients involved is key to include various perspectives more efficiently and effectively.  

These results demonstrate how a Dutch governmental initiative (ZonMw) and a patient organization’s approach jointly increased patient involvement in lung research. However taking into account the 13 key issues currently missing in primary sources, all related to fundamental and personal values of patients, the study also demonstrates the gap between the scientific research community and patient networks. In order to address this gap, Dr. Teunissen concludes with recommendations for future research, emphasizing the need for change in the current power balance between patients and healthcare professionals in order to develop ways to further improve patient involvement and empowerment into the key decision making processes affecting their health. Her complete PhD dissertation is available here.   

Patients’ school opens classroom for COPD patients in Spain06. EFA Members News3

The Hospital Costa del Sol in Marbella (Málaga) has opened a new classroom addressed to people with Chronic Obstructive Pulmonary Disease (COPD) within the School of Patients of the Andalusian School of Public Health. The COPD classroom aims to help patients understand and better deal with the disease in their daily life. Among the panellists and professors, patients will have the chance to listen and exchange with Ernesto Gonzalez, vice president of the Association of Allergy and Respiratory Illness Malaga (ALERMA) and member of FENAER.  

Survey finds millions at risk from life-threatening asthma attacks

A survey conducted by Allergy UK has found that more than three quarters of asthma sufferers are unaware that they may be at risk of a fatal attack, despite thinking their condition is under control. “Asthma is a killer, with three people dying of it every day in the UK.6 These shocking survey results reflect what we hear time and time again from the people that call our helpline,” said Lindsey McManus, Deputy CEO of Allergy UK. According to Government data, approximately 4 million people in the UK were being treated with asthma medication in 2012-2013. Based on survey findings of 464 participants, Allergy UK estimates that up to 2.7 million of those who consider their asthma to be mild or moderate, are at risk of life-threatening asthma attacks. Moreover, 78% of asthma sufferers who think their asthma is mild or moderate use up to four ‘reliever’ asthma inhalers a month, when in reality they shouldn’t even need to use one per month if their disease is well controlled.  

Austrian Member receives an EAACI prize for a scientific abstract

Mr. Otto Spranger has been granted with a prize from the European Academy of Allergy and Clinical Immunology (EAACI) as a recognition of his valuable contribution to the scientist community with the findings and conclusions of the abstract “Pharmacists can help to detect undiagnosed moderate-severe respiratory allergy. An EFA pilot study in Vienna, Austria”. Mr. Spranger presented the abstract at the EACCI 2014 Congress, celebrated in Copenhaguen in 7-11 June.