ELF activities at ERS International Congress 2015
Patient speakers and demonstrators
This year there ELF supported 14 patient speakers and 9 patient demonstrators, up from 6 speakers in 2014 and 3 in 2013. Patients contributed to sessions on a range of topics, including sleep apnoea and obesity, inhaler techniques, patient involvement in EU projects and exercise and lung health.
ELF also organised a well-attended patient-professional forum on pulmonary rehabilitation, where two patients shared their experience of going through rehabilitation programmes alongside their healthcare professionals.
For the first time, ELF organised a guide system to support patients and carers during their time at Congress and ensure that they were comfortable during their experience within the large centre. This initiative proved a great success from the perspective of the patients, the guides and the ERS/ELF.
Patient organisations at Congress
39 patient organisations from across Europe and the world, bringing with them over 70 representatives, took part in the Congress this year. These ranged from national organisations focusing on a single condition, to European and international umbrella organisations covering a number of conditions. View the complete list of patient organisations who attended.
16 of these organisations joined ELF in the World Village, whose layout was reimagined this year, with the aim of creating a more fluid space for networking, with hot desks for national societies and national umbrella patient organisations.
At the centre of the World Village was an auditorium for patient organisations, national professional societies, and ERS-supported projects to give short presentations on their key activities. Nine patient organisations presented here, alongside two ELF presentations on the European Patient Ambassador Programme and the Healthy Lungs for Life campaign.
Workshops and meetings
International Patient Advisory Committee
The first meeting of the International Patient Advisory Committee took place this year, giving patient organisations from across the globe the opportunity to share ideas and discuss areas of common interest. Representatives from 19 organisations, from places including US, Latin America and Japan, were involved. Lively discussions took place on lung health and the environment, international registries and global issues for air travel for people living with lung conditions that need oxygen.
Future meetings will be planned for both the ERS International Congress 2016 and other conferences where global patient organisations are attending.
Lung cancer workshop
Developed as part of ELF’s patient priorities project, this workshop brought together members of ELF’s lung cancer patient advisory group with healthcare professionals working in the field of lung cancer.
Workshop attendees discussed findings from questionnaires and interviews with patients, caregivers and healthcare professionals about treatment, care and multi-disciplinary team (MDT) working. The patient experiences shared and priorities identified will contribute towards the development of a joint patient-doctor statement on best practice in MDT working for lung cancer care across Europe.
EARIP asthma priority setting workshop
ELF, in collaboration with Asthma UK and Katherine Cowan, senior advisor to the James Lind Alliance, held a workshop to look at the priorities for asthma research in order to have the greatest impact on asthma treatment and management across Europe. The workshop brought together 31 participants (patients, patient organisations, clinicians, researchers and industry), with relevant experience and expertise. Participants validated and contextualised the priorities, which arose from a wider survey of patient and professional perspectives, as part of the EARIP (European Asthma Research and Innovation Partnership), an European Commission-funded pan-European research initiative.
ELF is now writing up the workshop for an EARIP roadmap for asthma, and a paper on the workshop, which will be co-authored by workshop participants. ELF also received a warm reception for an oral presentation on the results of the patient research priorities questionnaire. This presentation was attended by around 150 delegates.
Launch of Healthy Lungs for Life ‘take the active option’
To launch this year’s Healthy Lungs for Life campaign, ELF organised a free public lung function testing event and a ‘meet the expert evening’ for patients, in partnership with Longfonds.
The public lung function testing event took place across two sites in central Amsterdam, on Dam Square and Beursplein on Saturday 26 and Sunday 27 September. Members of the public were able to come to the event and have their lung function tested, take part in physical activities and classes, and learn more about how to ensure they are being active in clean air.
The event was hugely popular, with over 1,000 lung function tests being performed across the two days. Many more people also took part in physical activity demonstrations, an interactive bike challenge, a photobooth and the Healthy Lungs for Life clean air cycling and walking route.
We also held an extremely well-attended ‘meet the expert’ evening, where local patients learned about the latest lung health research being presented at the Congress, and about the importance of exercise and clean air to the lungs. After the presentations, patients had the opportunity to ask leaders in the field their questions.
As part of the ‘take the active option’ theme of this year’s Healthy Lungs for Life campaign, double-lung transplant recipient and international athlete André Lassooij was presented with the ELF Award for inspiring others through his sporting achievements. André accepted the Award as part of the Opening Ceremony on Saturday 26 September.