Patient involvement in ERS Task Forces and projects, February 2017
We are currently involved in several ongoing European Respiratory Society (ERS) Task Forces and projects. Here are some of the highlights of recent patient involvement activities:
Alpha-1 (alpha-1 antitrypsin deficiency – aatd) Diagnosis and management
This Task Force is developing an ERS statement on the management of lung disease associated with Alpha-1 Antitrypsin Deficiency (AATD). Patients and patient organisation representatives were recently asked to comment on the draft statement. They highlighted many important issues which healthcare professionals should take into account when diagnosing and treating AATD. A supplementary patient statement will be produced alongside the main statement.
LUNG CANCER (stage iii) treatment DECISION AID
Members of our lung cancer patient advisory group have been involved at various stages of this decision aid’s development and have recently been involved in testing a prototype of the tool. The tool will help individuals with stage III lung cancer find out about their treatment choices (surgery or radiotherapy), and support them in deciding which treatment they may prefer through its interactive interface. The tool is designed to be used in partnership with an individual’s consultant and will be piloted in English, with a view to producing it in other languages at a later date.
standardisation of cardiopulmonary exercise testing in chronic lung diseases
This Task Force is developing a Technical Standard which will outline one or two cardiopulmonary exercise testing (CPET) protocols and outcome measures for the assessment of individuals with different respiratory diseases. Several individuals with chronic lung diseases have now expressed an interest in providing their experiences of CPET to the Task Force and we are forming an advisory panel which will input at key stages.
This Task Force will hold its first meeting on 24 April, 2017 to begin the first steps in developing a guideline for sarcoidosis treatment. We have a sarcoidosis patient advisory group set up and ready to input at key stages of the project. Two members of the group will be attending the meeting as representatives of the wider group.
New Task Forces Coming Soon
Several new Task Forces have recently received funding and over the coming months ELF will work with the project teams and our patient organisation network to ensure patient perspectives are included. We will keep you updated on opportunities to get involved.