ELF and ERS launched a new Patient Priorities project in 2015 to develop patient-led guidance on what matters most to people affected by lung disease across Europe.
The first Patient Priorities projects focused on the following areas:
Lung cancer patient priorities
As part of the Patient Priorities lung cancer project, a Patient Advisory Group (PAG) was brought together to provide guidance and input into the project and is made up of individuals diagnosed with lung cancer, caregivers and lung cancer patient organisation representatives.
The group includes individuals from the Czech Republic, Denmark, Germany, Ireland, Italy, Poland, Spain and the United Kingdom.
A range of guidance is being produced as part of this project following consultation activities (surveys and workshops) with people across Europe and healthcare professionals working in this field.
A new lung cancer website was launched in August 2016 to improve access to the information and support that people affected by lung cancer in Europe have told us they need. It will be a key resource for European Respiratory Society (ERS) members to signpost their patients to.
LAM patient priorities
ELF and ERS have been working with individuals living with lymphangioleiomyomatosis (LAM) and LAM patient organisations to develop patient-led guidance on what matters most to people affected by LAM as part of our Patient Priorities project.
A survey and workshop were developed jointly by ELF and the European LAM Federation to identify and discuss the top 10 priorities for the diagnosis, treatment and care of women living with LAM.
A paper highlighting these priorities has been published in ERJ Open Research.
Read the full paper.
A patient advisory group consisting of women with experience of LAM from Denmark, Germany, Italy, Ireland, the Netherlands, Norway, Sweden and the United Kingdom has been guiding the project.
A website providing information and linking to resources for people affected by the condition across Europe was launched in June 2017.
Bronchiectasis patient priorities
We are working closely with ERS healthcare professional experts and our bronchiectasis patient advisory group to provide a website of information for people with experience of the condition.
This website is being developed alongside an educational platform for healthcare professionals on the treatment and management of bronchiectasis and both are due to be launched in 2017.
Representatives from our patient advisory group are also involved in a range of bronchiectasis research and awareness raising projects:
- Development of new ERS guidelines on bronchiectasis
- Ongoing development of the bronchiectasis registry, EMBARC to include a patient-driven registry
- An EU-funded project called iABC (inhaled Antibiotics in Bronchiectasis and Cystic Fibrosis)
- Participation in the first World Bronchiectasis Conference in 2016 – read a patient perspective of the event