Patient involvement in ERS Task Forces and projects, November 2016
The European Respiratory Society (ERS) funds experts in lung health to produce documents that give healthcare professionals guidance on how to diagnose, treat and manage different lung conditions and related issues. These are developed by groups called task forces.
We are currently involved in several ERS task forces and projects – both in terms of involving people with experience of lung conditions in guideline development, and in producing lay versions.
Below are the highlights of recent patient involvement activities.
New ERS task forces
ERS has recently approved several new task forces, with whom we are now discussing ways to involve people with experience of lung conditions so that their perspectives are included in the final guidelines.
Two of these new task forces are focused on guidelines for:
- Sarcoidosis treatment
- Tuberculosis (TB) standards of care
Primary ciliary dyskinesia
ELF worked with patient representatives and healthcare professionals on a survey which aimed to identify challenges faced by patients when referred for primary ciliary dyskinesia (PCD) diagnostic testing.
The results of this first international study have now been published in the European Respiratory Journal and will inform new ERS guidelines on diagnosing PCD.
The first ever European guideline on the diagnosis and treatment of bronchiectasis is due to be completed in December 2016.
Three representatives from our bronchiectasis patient advisory group have been involved from the beginning, attending all task force meetings, including the final one which took place at ERS International Congress in September 2016. They have advised on topics to be included in the guideline, which are important from a patient perspective, as well as the acceptability of treatments highlighted in the final recommendations.
We will produce a lay summary of the guideline which will be available on our website in due course.
This task force started earlier in the year and is developing a guideline on the long term management of bronchopulmonary dysplasia (BPD). A second meeting was held at ERS International Congress in September 2016, which representatives from our patient advisory group attended.
ELF has produced a patient-centred literature review to identify aspects of treatment and care which are important to patients, in order to inform the development of the guideline.
We still need parents of children who have experienced BPD and people who experienced BPD as a child to join the patient advisory group to feed in wider patient perspectives to this new guideline.