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

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.

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

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.

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.

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