EFA eZine July 2005

Welcome to the second issue of EFA Newsletter

Thank you for all those who sent us feedback on the new eZine and the newly launched website. The feedback for was overwhelmingly positive and tips for improvement very useful. We would be grateful if You would take a moment to consider who else in your organisation or among your partners would benefit from receiving this newsletter, and ask you kindly to forward this eZine to potentially interested colleagues.

Launch of the EFA Fighting for Breath report

The results of the EFA survey on severe asthma in Europe will be presented at the European Respiratory Society Congress in Copenhagen in September. 1300 patients from France, Spain, Germany, Sweden and the UK were asked what it means for them to live with severe asthma. The final report on the results, Fighting for Breath – European Patient Perspective on Severe Asthma will be launched 19th September 2005 during a press event. For more information, see the Media Alert. For EFA members, the press release is accessible at the Members section of the EFA website.

Joint ERS-EFA PG course on patient-doctor communication

If you are attending the ERS Congress in Copenhagen, be sure not to miss the joint ERS-EFA Postgraduate Course (PG 22) Improving physician-patient communication. The aim of the PG is to update participants on a developing research base of strategies to alter physician behaviour and improve patient outcomes. The target audiences are paediatricians, primary care physicians, adult respiratory physicians, specialist respiratory nurses, trainees in respiratory medicine and patient organisation representatives. For more information, see the ERS Congress programme.

New Pan-European Surveillance System for inhalant allergens

The partners of the Global Allergy and Asthma European Network of Excellence (GA²LEN) have designed a new pan-European skin prick test panel to study the prevalence of allergens throughout the EU. The skin-prick test panel, which assesses sensitization against 18 inhalant allergens, will for the first time provide standardized data on the many under-detected allergens, such as ragweed in European patients with allergic rhinitis and asthma. To find out more, see GA²LEN Press Centre.

GA²LEN has also launched an email service for partners, which will keep track on new updates at the partners section of GA²LEN website, including new research on allergy and asthma. EFA members are invited to subscribe to partners section.

Report from the meeting of ECDC

The Advisory Forum of the European Centre of Diseases Prevention and Control had its’ first meeting with their new Advisory Forum 11-12 July 2005. The meeting was mostly dedicated to organizational matters and the role of the Centre in relation to other important actors in the field. To start with the ECDC will focus on diseases such as influenza, infections with antibiotic-resistant bacteria, GI infections. Other diseases, including those of respiratory tract, will become a subject of interest in the future. The report of the meeting prepared by EFA’s representative in the Forum, Anna Doboszynska can be accessed by EFA members at the Members section of the EFA website.

Patient representatives to EMEA Board

The European Council of Ministers has finally made the appointments of the two patient representatives to the European Medicines Authority (EMEA) Management Board. EMEA coordinates the evaluation and supervision of medicinal products throughout the EU. Jean Georges from Alzheimer Europe represents European Patients Forum (EPF) (of which EFA is a founding member) and Mary Baker from European Parkinsons Disease Association in the Board for a period of three years. We would like congratulate warmly Jean and Mary, and the whole patient community for these important appointments. For more information, see the EMEA website.  

EU tobacco advertising ban takes effect

Directive banning tobacco advertising in the print media, on radio and over the internet entered into force on 31st July 2005. It also prohibits tobacco sponsorship of cross-border cultural and sporting events. Banning advertising is one of the most effective ways of reducing smoking. According to a study by the World Bank, advertising bans can reduce smoking up to 7%. The EC press release is available in all EU languages.

Petition for the Czech Republic to ratify the FCTC

The Czech Republic failed to ratify the WHO Framework Convention on Tobacco Control (FCTC). The Czech Senate refused its ratification on June, 23, 2005 with one voice missing. A petition to persuade Czech Republic on GLOBALink will be forwarded to the appropriate representatives in the Czech government. You can help by signing the petition at the GLOBALink website.

Source: ENSP

Global Alliance against Respiratory Diseases

The website of Global Alliance Against Respiratory Diseases (GARD) was launched 18 August by the World Health Organisation (WHO). The aim of the GARD is dedicated to fight against chronic respiratory diseases, to improve their care and education by sharing expertise, identifying problems, promoting solutions and coordinating activities. The members are internationally recognised organisations, institutions and agencies around the world who work on respiratory diseases. EFA is one of the founding members, and the only patient organisation member thus far. The Alliance is due to be launched at a later date. For more information, see WHO website.

Source: WHO

Call for regional ‘Champions’ for Patients for Patient Safety

The Patient and Consumer workshop on patient safety, which was highlighted in the EFA Newsletter nro 1 will take place from November 27th to 1st December 2005 in London as part of the World Health Organization (WHO) World Alliance for Patient Safety. This Patients for Patient Safety -initiative is designed to ensure that the perspective of patients is a central reference point in shaping the work of the Alliance.

We want to make contact with you to identify and recruit patients, consumers, or other relevant individuals who have the willingness and skills to be effective partners with the health care community in achieving the goals of the World Alliance. The workshop will involve up to 24 patients and consumer participants, recruited from around the world. If you are interested in participating, or know someone who may be interested, the call for participants and an expression of interest form can be found at WHO website or you can alternatively email to Rachel Heath, Patients for Patient Safety Project Support Officer at safety@patientsorganizations.org

Working with the Media on health and environment

The European Public Health Alliance Environment Network (EEN) and the European Public Health Alliance (EPHA) recently released a new pocket guide Working with the Media to help non-governmental organisations and other health and environment communicators become more active and more effective in their relations with the media. The purpose of the guide is to assist in overcoming challenges such as forming closer ties with the Media and to become more media-wise by outlining the basic tasks for maximum success. The Guide is available in English, French, German and Russian at EPHA website. 

Patient centered healthcare on chronic conditions

The World Health Organization (WHO) publication, Preparing a Healthcare Workforce for the 21st Century: The Challenge of Chronic Conditions calls for the transformation of healthcare professionals training to better meet the needs of caring for patients with chronic conditions. It presents a new, expanded training model, based on a set of core competencies of patient-centred healthcare, which are partnering, quality improvement, information and communication technology and public health perspective. It will however not exclude the already established core competencies; based on evidence, ethics and profession specific competencies. A copy of the report, which was launched earlier this year can now be ordered and downloaded at WHO website in English, French and Spanish.

Source: IAPO News