ERS Congress 2012 – Vienna, Austria
1 -5 September
The 22nd annual European Respiratory Society (ERS) Congress was held in September 2012 at the Messe Wien Congress Centre, Vienna.
Patient organisations at Congress
The ELF was pleased to welcome 16 patient organisations to the ERS Congress again this year, with each having a stand in the World Village where they could raise awareness of their organisations by displaying posters, providing literature, and engaging with professionals on their vital role in supporting patients.
The World Village was located in the heart of the Congress centre ensuring that all delegates would have the opportunity to see the stands and go and speak with the patient organisation representatives. The ELF also offered a Patient Organisations of Europe ‘break-away’ area for anyone to hold informal meetings, or just to sit and enjoy a cup of coffee whilst looking at the posters supplied by organisations unable to attend.
The ELF would like to say a huge thank you to all the patient organisation representatives that attended for their valuable contribution to the ERS Congress and tireless efforts to communicate with professionals and support patients with lung conditions across Europe:
- Alpha Europe Federation
- Associacion Italiana Pazienti BPCO Onlus, Italy
- Longfonds, Netherlands
- Asthma UK
- British Lung Foundation (BLF)
- Cystic Fibrosis (CF) Europe
- European Federation of Allergy and Airway Diseases Patients Association (EFA)
- European LAM Federation
- European Pulmonary Hypertension Association (PHA)
- French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR), France
- La Federación Nacional de Asociaciones de Enfermedades Respiratorias (FENAER), Spain
- Global Allergy and Asthma Patient Platform (GAAPP)
- June Hancock Mesothelioma Research Fund, UK
- Lovexair Foundation, Spain
- Lungenunion, Austria
- Romanian Tuberculosis Association (ARB-TB), Romania
Some of the feedback received by the ELF:
‘I wish to thank you very much for your support and collaboration at the ERS and confirm you that the experience at the Congress has been very positive and useful to make visible LAM and the European LAM Federation!’ (Iris Bassi, European LAM federation)
‘Thanks for ERS 2012: we had a great time in Patients Village and found in ELF a real support and help!’ (Marius Dumitru, ARB-TB)
‘I thank you on behalf of myself and of FENAER, being able to attend the ERS Congress in Vienna we had contact with patients associations of various countries and with entities interested in collaborating. These few days have been very interesting and very helpful for FENAER.’ (Marivy Palomares, President of FENAER)
Patient Advisory Committee meeting
Since the first meeting of the Patient Advisory Committee in Amsterdam last year, the advisory committee has continued to provide valuable feedback upon ELF activities, helping the ELF to develop its network of European patient organisations, working together to share information and successes, to support each other to develop both at the national and European level.
During Congress the PAC met for a productive morning of information sharing and discussion. The ELF provided an update on their projects and activities, and thanked the patient organisations for their input into the WSD campaign and development of a patient organisation chapter for the new White Book. Committee members were invited to vote on which ERS Congress 2013 symposia should have patient input, and to suggest topics for patient symposia for ERS Congress 2014. The ELF looks forward to collaborating with PAC members on these projects.
During the meeting information was also given on EFA’s access to air travel lobbying project, the establishment of the European Sleep Apnoea Federation, the progress of the European COPD Coalition (ECC), and with mention of the upcoming EAACI International severe Asthma Forum, and IPF Week (23rd-30th September).
ERS Congress is a great opportunity for patient organisations to come together and be empowered by each other’s activities and we hope that the Patient Advisory Committee will continue to foster this sense of European collaboration between patients, professionals, and patient organisations.
European Patient Ambassador Programme (EPAP)
One of ELF’s major projects this year has been the development of the European Patient Ambassador Programme (EPAP), an online learning resource to help patients and carers gain knowledge, skills and confidence to actively engage in research, guidelines, advocacy and media activities.
A trial version of the programme was launched at Congress, with an introductory event and invitations to try it out and give feedback.
Throughout the conference computers were available on the ELF stand for people to come and try out the four taster modules.
The response was overwhelmingly positive with lots of interest from both patient organisations and professionals. Over 60 login accounts were created and all feedback received will be used to further refine the programme.
This year the ELF organised three highly successful symposia with patient involvement:
• ELF/EFA joint symposium ‘Patient views on respiratory allergies: raise awareness, release the burden’
• Improving adherence to maintenance medication in asthma: new tools for the clinician [Co-chaired by Monica Fletcher, with David Supple presenting “The patient’s perspective and shared decision making”]
• Patient symposium – The unmet needs of patients with COPD
The room was filled for the presentation of the patient’s perspective in asthma medication adherence with many professionals reporting the value of being reminded of the patient’s perspective.
The patient symposium was another great event, with over 70 patients attending to hear about the ERS COPD Audit and discuss the unmet needs of people with COPD in Europe. Four questions were discussed and a report on the audit and discussion of the symposium will be available on the ELF website soon.
ERS Scientific Taskforces
Encouraged by the positive response from professionals to the involvement of patients in the ERS taskforce on chronic cough, the ELF also attended the meetings of the COPD and activity and Smoking and COPD taskforces. These taskforce groups were keen to include patient voices in their projects, and to work with the ELF to disseminate their work to a wider public audience.
The ELF is excited by these opportunities and looks forward to working with the taskforces to develop patient involvement.
‘Monica Fletcher ELF chair and her team presented their huge experience with patient interaction. This experience is highly welcome in the preparation of the document.’ (Carlos Jimenez-Ruiz, ERS Taskforce: Smoking and COPD)
Press at Congress
The ELF is responsible for disseminating the most interesting and newsworthy research from the ERS Congress to the press and media.
This year, over 500 cuttings were featured in over 10 countries in Europe – bringing important new developments in research to an even wider audience.
The biggest stories have included a new paper on why children with asthma are more likely to be bullied, sleep apnoea in commercial vehicle drivers and the link between smoking rates and the earthquake in Christchurch, New Zealand.
These stories have featured in TV New Zealand, Irish Health and the Huffington Post.
To read the latest science updates, you can view all the Congress news releases on the website.