The following patient involvement activities helped us identify what matters most in LAM treatment and care:
A patient-centred review of published medical research and organisational literature formed the basis for planning discussions and consultation throughout the project.
Consulted in Europe
An online questionnaire was disseminated in 7 languages across Europe to identify the top 10 priorities for treatment and care for LAM.
Patients, caregivers, health professionals and industry representatives came together at a workshop in Munich in September 2014 to discuss priorities in LAM treatment, care and research.
Set up patient advisory group
A patient advisory group was formed to support the development of this project. Members are all individuals with experience of LAM and come from Denmark, Germany, Ireland, Italy, the Netherlands, Norway, Sweden and the United Kingdom.
Development of patient-led guidance
Following our consultation activities:
- We developed this website to act as a central place to signpost individuals to quality LAM information in Europe.
- We raised awareness of LAM by publishing an article highlighting the top 10 LAM priorities in ERJ Open Reseach, a European journal for respiratory healthcare professionals.
Engaged with health professionals
Our consultation activities included LAM healthcare experts who came together with patients, caregivers and industry representatives at our consultation workshop.
A presentation on the priorities of people living with LAM in Europe was given at a symposium at the ERS International Congress in Munich by the European LAM Federation.
Read more in this article 'Patient voices at the ERS International Congress 2014: highlighting LAM'