ERS Congress 2011 – Amsterdam, the Netherlands
24-28 September

The 21st ERS Congress was held in Amsterdam, the Netherlands at the Amsterdam RAI congress.

  • Patient organisations at Congress
  • ELF events at Congress
  • ELF Symposium: the value of patients as partners in research

Patient organisations at Congress

A total of 16 patient organisations joined the ELF and national societies this year at the Congress in the World Village. The patient organisations brought with them examples of their work and materials that could help and benefit healthcare professionals in their interaction with patients.

The layout of the patient organisation section of the World Village allowed for networking and interaction between the groups to develop effective and long-lasting partnerships.

All the patient organisations also participated for the first time in an ELF advisory committee, in order to provide the ELF with the vital advice and support it needs to ensure patients are integrated in the ERS to best effect and to ensure that their voice is heard alongside that of the professional.

The ELF would like to say a huge thank you to all representatives of the following patient organisations for their fantastic contribution to the ERS Congress:

  • Federasma, Italy
  • Associacion Italiana Pazienti BPCO Onlus, Italy
  • Vereniging Apneu Patienten (VAPA), Belgium
  • Apneuverening, the Netherlands
  • French Federation of Associations of Patients with Respiratory Insufficiency or Handicap (FFAAIR), France
  • France Lymphagioleiomyomatose (FLAM), France
  • June Hancock Mesothelioma Research Fund, UK
  • British Lung Foundation (BLF), UK
  • Irish Sleep Apnoea Trust (ISAT), Ireland
  • Asthma Society of Ireland, Ireland
  • Romanian Tuberculosis Association (ARB-TB), Romania
  • Astmafonds, the Netherlands
  • Pulmonary Hypertension Association (PHA), Europe
  • Alfa Europe Federation e.V, Europe
  • CF Europe, Europe
  • European Federation of Allergy and Airway Diseases Patients Association (EFA)

ELF events at Congress

First ERS Patient Symposium

The first symposium for patients was held at the 2011 European Respiratory Society (ERS) Annual Congress.

This exciting event was the first symposium open to patients and members of the public at the ERS Congress and gave people the opportunity to meet with ERS experts and find out more about the latest respiratory research in Europe.

The session covered a number of interesting topics looking at patient involvement in scientific studies. The talks looked at how research projects can include patient input and how the pharmaceutical industry is working to encourage more interaction between pharmaceutical companies and patients.

Overviews of both the U-BIOPRED project and the PROActive project were given as examples of pan-European projects which are already working to involve patients from the outset.

In the lively debate following the presentations, the audience were given the opportunity to put their questions to the experts. This discussion focused on how patients can get involved in research and what is needed from researchers to make patient involvement a successful component of a project.


•    How is Europe responding to the needs of patients with respiratory disease?
Michel Goldman, Executive Director Innovative Medicines Initiative (IMI)

•    Translating a good idea into a treatment of lung illness, the challenges and joys of developing new medicines
Tim Higenbottam, Director of Corporate Clinical Development, Chiesi

•    Where science and patients meet: understanding asthma
Pim de Boer, from the U-BIOPRED research project

•    Listening to patients to improve outcomes of COPD
Thierry Troosters, from the PROactive research project

•    How does the ERS guide patient care of the future?
Marc Decramer, President of the ERS

ELF Symposium: the value of patients as partners in research

The ELF organised a symposium for Congress attendees on ‘the value of patients as partners in research’. The session explored how respiratory professionals can meaningfully involve patients in their research.


The symposium addressed a number of issues including the challenges that might be faced by healthcare professionals who wish to involve patients in their research and also the benefits that can be gained by having patients as active partners in a study. The speakers also provided some useful examples of where patients have been successfully involved in research (see Powerpoint presentations below).

The resounding message from the symposium was the added value patients can bring to clinical and basic research. All the speakers agreed that bringing patients on-board as equal partners strengthens the outcomes and quality of research, and improves a researchers understanding of a disease.

Each speaker also talked about next steps to ensure that patient involvement in research can be easily achieved. The presentations are available to download below.


Dr Cor Oosterwijk from the Dutch Genetic Alliance of Parent/Patient Organisations (VSOP) and Secretary General of the European Genetic Alliances Network (EGAN).
Presentation: Patient involvement in clinical research: a new golden standard

Professor Peter Sterk from the University of Amsterdam in the Netherlands.
Presentation: Active patient participation in research and research policy making

Drs. Truus Teunissen, policy advisor Astma Foundation and researcher at the VU University Medical Center in the Netherlands.
Presentation: The added value of active patient involvement in health research

Sarah Buckland, Director, INVOLVE, a national advisory group which supports greater public involvement in NHS, public health and social care research in the UK.
Presentation: Workable tool for active patient participation: the patientcriteria list


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