Patient involvement in ERS Task Forces and projects, May 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:
This task force is developing a statement on quality thoracic oncology care and members of our lung cancer patient advisory group have reviewed documentation and provided feedback on specific questions on a regular basis. Most recently, they were consulted about the feasibility of capturing patient-reported quality of life information in a standardised way across Europe. This input will help to shape the final report, due to be published this year.
The development of guidelines on sarcoidosis treatment is the focus of this recently-formed task force and the first meeting took place last month (pictured above), with representatives from our sarcoidosis patient advisory group sitting alongside health professionals from across the globe.
The patient representatives gave a series of well-received presentations which highlighted a range of patient issues and perspectives. Discussions focused on finalising the key questions that the recommendations will be based on, as well as an explanation of the strict methodological approach that members will participate in. The patient representatives will be consulted throughout to ensure that issues that are of importance to patients are considered, and a further meeting will take place at ERS International Congress in September.
New Task Forces
Several new task forces have recently been funded, focused on improving diagnosis, treatment and care across a wide range of lung conditions. ELF is working with the healthcare professionals involved to ensure patient perspectives are included.
We would love to hear from any patient, carer and patient organisation representatives interested in sharing their experience of the following topics:
- Severe asthma – developing clinical practice guidelines on the definition, treatment and management of severe asthma in adults and children
- Tracheomalacia and bronchomalacia (softening and collapse of the walls of the windpipes) in children – developing a definition, and understanding different treatment options for these conditions
- Cough – developing clinical practice guidelines for unexplained and undiagnosed cough in adults and children
- Lung conditions and pregnancy – considerations for treating women with a lung condition during pregnancy, and the impact this may have on their babies. This includes women with a wide range of lung conditions, such as asthma, cystic fibrosis and bronchiectasis.
If you would like to know more or are interested in getting involved, please email Courtney Coleman, patient involvement and engagement.