Picture: the first ELF patient organisation networking day in London in 2016
While serving as ELF Chair, I have been fortunate to get involved in a range of different activities, from the launch and the growth of the Healthy Lungs for Life campaign to holding the first ELF patient organisation networking day – below are just a few of the highlights.
During my mandate, the role of patients within ERS science and education activities has grown considerably, helping to ensure that research, guidelines and training for healthcare professionals are all informed by the lived experiences of people with lung conditions.
Patient representatives have been involved in the development of nine ERS clinical practice guidelines covering a wide range of lung conditions. Patients have also provided input into five ERS Clinical Research Collaborations (CRCs), helping to set the research agenda and highlight evidence gaps.
Patient input is increasingly recognised as playing a vital role in these activities, and I am delighted that one of the newest CRC projects in severe asthma has recently appointed two patient chairs, demonstrating their commitment to delivering patient-centred research.
The Healthy Lungs for Life campaign is now entering its fourth year. It is one of the largest ever lung health campaigns, raising awareness of the importance of healthy lungs to healthcare professionals, scientists, primary care, patients, policymakers and the public through a full range of events, projects and promotional activities.
Since it began in 2014, we have held flagship events alongside and within the ERS International Congress in Munich, Amsterdam and London – with activities in Milan to come! Colleagues around the world have built on this momentum, holding hundreds of lung function testing and training events in countries from Japan to Kenya.
The campaigns, which focus on protecting lung health, have raised awareness of the importance of air quality at home, outdoors and at work; the need for regular physical activity; and the benefits of a smoke-free life. To this end, we organised two European Parliament events, putting pressure on policymakers to support legislation that protects lung health.
I am proud to have been part of the original steering committee for the European Patient Ambassador Programme (EPAP). Along with my fellow ELF Patient Advisory Committee member, Kate Hill, we worked on the programme’s original concept – taking it from a respiratory-focused course just for people working with ELF, to a cross-disease tool for any patient wanting to get involved with healthcare at a more in-depth level.
Since it was created, EPAP has:
I am very proud to have been part of the development of this programme, and hope that it continues to grow and flourish and help patients who are ready to be advocates for their health to develop the skills they need.
People with lung conditions often face issues when planning air travel, especially if they need additional oxygen. Oxygen policies tend to vary between airlines and countries, and it can be difficult to get the right information. During my term as ELF Chair, I wanted to make sure that we addressed this issue, and put pressure on the relevant stakeholders to make the process simpler and fairer.
Last year, we updated our online air travel database with information on airline travel policies, making sure that the information for patients contacting us with queries on how to arrange air travel with a lung condition is accurate.
We also launched two separate online surveys on air travel with a lung condition: one targeting patients across Europe (survey was translated in 9 languages) and one for healthcare professionals. 96 patients and almost 200 healthcare professionals responded.
The results of these surveys and the views of patients, healthcare professionals and stakeholders were discussed at a workshop at the ERS International Congress in London in 2016. Read the report.
In 2017, we also updated the website to make it more user-friendly, and to provide more information on topics such as the medical examinations needed before booking flights, arranging special assistance and the rights of EU citizens. In addition, we produced a video on the fit-to-fly test.
In the meantime, we have continued working with the airline industry, healthcare professionals and patients to understand how to make air travel with a lung condition easier, and we have invited key stakeholders to a symposium on the topic which will take place at the ERS International Congress in Milan (Monday 11 September, 8.30am–10.30am).
We will share the outcomes of the symposium, and continue to work on this important topic with the aim of making air travel easier and fairer for people with lung conditions.
During my mandate, ELF launched patient priorities – a new type of project to develop patient-led guidance for people with lung conditions and healthcare professionals in Europe.
I was very proud to be involved with patient priorities from the beginning. The first of these projects, which launched in 2015, focused on lung cancer. Since I have personal experience of caring for a family member with lung cancer, I participated in the project’s patient advisory group (PAG), joining a fantastic group of individuals affected by lung cancer who were all enthusiastic about improving treatment and care for other patients. Alongside individual patients from a range of countries, this PAG brought together representatives from patient organisations including Women Against Lung Cancer in Europe (WALCE), Lung Cancer in Europe (LuCE), Stowarzyszenia Walki z Rakiem Pluca, Asociacion Espanola de afectados de cancer de pulmon, the June Hancock Mesothelioma Research Fund and Patientforeningen Lungekraeft.
This project culminated in a new website for people with experience of lung cancer. The website includes information developed by patients and approved by medical experts for people diagnosed with lung cancer, as well as guidance on how lung cancer treatment and care could be improved from the patients’ perspective.
Following this, the patient priorities model has gone from strength to strength, with ELF launching projects covering LAM, bronchiectasis and childhood interstitial lung disease.
Raising awareness of work-related lung conditions among workers, employers and healthcare professionals was another key part of my mandate when I came into post. Throughout Europe, knowledge of these conditions and how to protect against them is still very low.
In 2016, we brought together people with lung conditions, professionals and policymakers to discuss progress in the field of work-related lung conditions and prevention over the years, knowledge about the current and future needs and recommendations to employers, employees and policymakers. Read more about the workshop.
As an outcome of the workshop, we decided to produce an online tool that members of the public can use to check whether their symptoms might be related to their current or previous workplace.
In drafting the tool, we have worked closely with the occupational experts, healthcare professionals, patients and the UK Health and Safety Executive.
We have also been working with the European Agency for Safety and Health at Work (EU-OSHA) and several national focal points – with interest expressed from the Netherlands, Portugal, Austria, the Czech Republic, Bulgaria and Hungary.
The online tool should be ready in English before the end of the year, with translations hopefully following shortly thereafter; I look forward to sharing it with you.
Learn about the factors that can cause lung disease and the ways to reduce your contact with them.
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