1. Patient involvement in ERS Task Forces
Nicola Cassidy, Irish Lung Fibrosis Association

2. ERS IPF Task Force
15 Task Forces –including: Home mechanical ventilation; Lung cancer; Pulmonary rehabilitation; Asthma; Primary ciliary dyskinesia; Bronchiectasis
The review is needed to:
look at major issues in diagnosing and managing IPF which have less research
Ask patients and carers what issues of diagnosis and management matter to them
ELF works to involve patients across ERS activities. IPF organisations identified and invited to hold focus groups to discuss the issues that matter to them in IPF diagnosis and management (June 2013)
The TF had already identified a number of areas where they wanted patient opinion. Although the number of topics increased once the steering group was set up.

3. The ERS IPF Task Force – why?
To review guidelines and produce an updated statement including patient perspectives via the ELF

4. ERS IPF Task Force – How?
ELF invited IPF patient organisations the AIR meeting in Nice 2013 to get involved by holding focus groups
Focus groups (over 50 patients):
ILFA, Ireland
BVL, Belgium
AMA fuoridalbuio, Italy
Bristol PF Support Group, UK
Complementary literature:
Lung fibrosis quality criteria questionnaire, Netherlands, 2011
EU IPF Patient Charter, 2014
The review is needed to:
look at major issues in diagnosing and managing IPF which have less research
Ask patients and carers what issues of diagnosis and management matter to them
ELF works to involve patients across ERS activities. IPF organisations identified and invited to hold focus groups to discuss the issues that matter to them in IPF diagnosis and management (June 2013)
The TF had already identified a number of areas where they wanted patient opinion. Although the number of topics increased once the steering group was set up.

5. ERS IPF Task Force – what?
The 10 priorities integrated into the Task Force manuscript for publication in 2016:
rapid diagnosis understanding IPF staging
lung transplantation - access to clinical trials
pulmonary rehabilitation - medication issues
psychological support - communication
advanced care quality of life information and support
Communication and support paper planned for 2016
The review is needed to:
look at major issues in diagnosing and managing IPF which have less research
Ask patients and carers what issues of diagnosis and management matter to them
ELF works to involve patients across ERS activities. IPF organisations identified and invited to hold focus groups to discuss the issues that matter to them in IPF diagnosis and management (June 2013)
The TF had already identified a number of areas where they wanted patient opinion. Although the number of topics increased once the steering group was set up.

6. Opportunities - Conferences and networking