ELF activities at the ERS International Congress 2017
The European Respiratory Society (ERS) International Congress was very busy for ELF in 2017 – many thanks to everyone that contributed and took part in our different activities. Read below for some of the highlights.
New ELF Chair and members of the ELF Council
During Congress, Isabel Saraiva took over from Dan Smyth as ELF Chair.
Kate Hill of the June Hancock Mesothelioma Research Fund was voted in as the ELF Patient Advisory Committee representative on the ELF Council, taking over from Juan Fuertes of the European Pulmonary Hypertension Association (PHA Europe).
Isabel and Georgia will also join Kate on the ELF Council.
Many thanks to Dan, Karin and Juan for their hard work, enthusiasm and support over the last 3 years.
PATIENT SPEAKERS AND DEMONSTRATORS
Each year ELF supports patient involvement in the Congress as speakers, chairs and demonstrators to highlight the real-world experiences, perspectives and priorities of people living with a lung condition.
This year there were 15 patient speakers and chairs, up from 14 speakers in 2016. Patients contributed to sessions on a range of topics, including air travel with a lung condition, the burden of treatment for people with cystic fibrosis and how digital tools can be used to support people with asthma. Three patients took part as demonstrators within thoracic ultrasound skills workshops, helping to train professionals in a new technique.
In addition, ELF organised a well-attended patient-professional forum on quitting smoking. This session, which carried the messages of the Healthy Lungs for Life campaign, involved incoming ELF Chair Isabel Saraiva sharing her experience of smoking cessation alongside members of the ERS Tobacco Control Committee and Women Against Lung Cancer in Europe.
ELF also led a professional development session on involving patients in medical research projects, to help healthcare professionals explore ways in which they can increase patient input into their work.
Air travel with a lung condition symposium
Making air travel easier and fairer for people with lung conditions was a key goal for Dan Smyth during his term as ELF Chair. To mark the end of his mandate, ELF organised a joint symposium on the topic with ERS on Monday 11 September. Dan co-chaired the session, which included perspectives from a patient, a healthcare professional and representatives from industry.
The session was lively and very well-attended, with many healthcare professionals in the audience keen to join the debate and pose questions for the speakers. This is an area in which ELF will continue to be active, as it is clear that there are many unmet needs for both healthcare professionals and patients – and following on from the symposium, ELF has received a number of requests and suggestions for new activities in this area, so watch this space.
LAUNCH OF the HEALTHY LUNGS FOR LIFE campaign
This year the Healthy Lungs for Life campaign carried on the theme of ‘Breathe clean air’, aiming to raise awareness of the importance of clean air and a smoke-free life for lung health.
The campaign was successfully launched with public events in central Milan and prominent messaging and sessions throughout the Congress centre.
PATIENT ORGANISATIONS AT CONGRESS
52 patient organisations from across Europe and the world, bringing with them over 90 representatives, took part in the Congress this year. This compares with 70 representatives from 42 organisations in 2016. Patient organisations ranged from national organisations focusing on a single condition, to European and international umbrella organisations covering a number of conditions
Many of these organisations joined us in the World Village, which aimed to provide a fluid space for networking as in previous years. As with the last two congresses, the World Village included an auditorium for presentations, where seven patient organisations spoke about their work, as well as on topics such as smoking cessation, mindfulness and patient involvement.
Patient organisation networking day
Based on feedback from last year’s event, the second ELF patient organisation networking day aimed to provide greater networking opportunities between patient representatives and healthcare professionals. We did this primarily through merging our day with the ERS Primary Care Day (PCD) – ELF delegates were invited to attend the PCD morning presentations and healthcare professionals were invited to attend ELF afternoon workshop sessions, and a shared networking lunch brought the morning and afternoon sessions together.
Attendance was increased from last year with 65 patient organisation representatives (representing 42 organisations from 21 different countries/areas) attending with 18 healthcare professionals.
The first workshop of the patient organisation networking day continued discussions around the PCD theme of ‘Transforming healthcare to optimise management of long-term respiratory disease’, with a focus on key components of the Innovative Care for Chronic Conditions framework
The second workshop aimed to provide more opportunities for sharing experiences and learning on issues of relevance to patient organisations. We also included a specific session for the posters based on feedback from last year, and included an update on the ELF 3-year plan.
We are looking to evolve and optimise the patient organisation networking day for next year in line with feedback from this year's event.
WORKSHOPS AND MEETINGS
International Patient Advisory Committee
Since 2015, ELF has organised an International Patient Advisory Committee (IPAC) at Congress – giving patient organisations from around the world the chance to catch up, share best practice and discuss areas of common interest.
14 organisations took part in the meeting – both from Europe and from countries including the US, Chile, Japan and Australia – and representing conditions such as Alpha-1, asthma, COPD, sarcoidosis and pulmonary hypertension.
There was discussion about the incoming ELF Chair’s priority areas (air pollution, health inequalities, women and rare diseases) – and activities/projects in these areas that the different organisations are working on.
A representative from the Forum of International Respiratory Societies (FIRS) also joined the meeting to discuss World Lung Day.
Bronchiectasis patient advisory group
During Congress, the ELF/EMBARC bronchiectasis patient advisory group celebrated the publication of the first ERS guideline on the management of adult bronchiectasis, which was launched in a presentation to a packed room. Three of the patient advisory group were full voting members on the guideline.
Six members of the patient advisory group also met with seven healthcare professionals to discuss priorities for future work. These included more research on cross-infection and why patients struggle to access pulmonary rehabilitation (in spite of this being a strong recommendation of the recently-published guidelines); plus information on travelling by air.
Sarcoidosis patient advisory group
Members of the sarcoidosis patient advisory group were brought together as an opportunity to provide clarification on the activities of the Task Force and their involvement, along with a chance to strengthen their networking and discuss the future of a pan-European network.
The two chairs of the Task Force joined the meeting to provide an update on activities, and the group discussed how to make sure it is representative of as many people’s experience of sarcoidosis as possible.
Task Forces and Clinical Research Collaborations
During Congress, ELF and patient representatives attended meetings for 20 Task Forces and Clinical Research Collaborations (CRCs) to either discuss patient involvement in new projects or present the findings of current involvement.
In total, 27 patients and patient organisation representatives contributed to the meetings of in non-cystic fibrosis bronchiectasis, childhood interstitial lung disease, lung cancer, bronchopulmonary dysplasia, severe asthma, mesothelioma, sarcoidosis, cardiopulmonary exercise testing, acute bronchiolitis, chronic cough, sleep apnoea, tracheomalacia and bronchomalacia in children, idiopathic pulmonary fibrosis, airway disease during pregnancy, and non-invasive ventilation in COPD.
As in previous years, it was highly valuable to have patient representatives attending Task Force and CRC meetings. ELF recently produced new guidance for Task Force Chairs, outlining key considerations and tips for best involving patients in meetings and this was shared with Chairs in advance.
Several Task Forces holding their first kick-off meeting had patient representatives in attendance. The patients made valuable contributions – for example, identifying patient-centred outcomes, highlighting evidence gaps, and sharing their real-world experiences of managing their lung condition to inform PICO questions. For other new Task Forces, an ELF staff member attended and helped to outline the options for gathering wider patient perspectives. This proved beneficial in terms of developing an agreed approach to patient input and getting buy-in from the wider Task Force members.
Several CRC meetings also had patient representatives attending, including the first CRC with two patient co-chairs. This has helped to set the tone for the CRC which aims to “have patients at the centre” and other members of the CRC commented that the patient Chairs made excellent contributions and helped them to consider activities from a different perspective.
At the Congress opening session, outgoing ELF Chair Dan Smyth presented the ELF Award to Professor Colin Sullivan, the inventor of continuous positive airway pressure (CPAP).
The Award recognised Professor Sullivan’s huge contribution to improving the lives of people living with sleep apnoea – an issue personally felt by Dan, who uses CPAP himself.