Patient involvement in medical guideline development

The European Respiratory Society (ERS) produces documents that give healthcare professionals guidance on how to diagnose, treat and manage different lung conditions and related issues. ELF works to facilitate patient involvement in this process.

Since 2011, ELF has worked on 15 of these documents, spanning topics from chronic cough to lung cancer, pulmonary rehabilitation to severe asthma. ELF has been working to make sure the involvement of people with the lung condition or experience of the issue being covered are involved meaningfully, with their perspectives heard and included in the final document.

ELF now offers a range of methods for patient input:

• Patient advisory groups – a group of 8-10 dedicated patients (and carers) from across Europe who inform the work of the guideline development group at all stages, and determine the best way to include the patient perspective in the final document
• Focus groups – regional groups of patients who come together to discuss key themes for the guideline group so that the similarities and differences between the perspectives of patients in different countries can be analysed and included alongside the guideline
• Guideline group members – a small number of patients may be asked to join the guideline group, and work with the doctors to decide the topics will be covered in the guideline.
• Online surveys – aim to gather the perspectives of the widest possible number of patients and family members across Europe. They are developed with patients and patient organisations and translated into several languages
• Co-authors and reviewers – helping write the patient content for the guideline document or separate articles on the patient perspective, as well as helping ELF develop factsheets for patients on the guideline topic

In 2015, ELF has been working on guidance documents for diagnosis, treatment and management in:

• Idiopathic pulmonary fibrosis
• Pulmonary rehabilitation policy
• Home mechanical ventilation
• Non cystic-fibrosis bronchiectasis
• Lung cancer
• Sarcoidosis
• Electronic cigarettes
• Mesothelioma
• Severe exacerbations in severe asthma

These guidelines are all at different stages of development, and we will be starting work on new topics from January 2016. If you would like more information about any of these guidelines visit the ELF Task Force page or email us.