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 involve patients at the different stages of ERS task forces to:
- Develop: find the best way to hear the views of patients on the topic of new guidelines
- Feedback: add the patient perspective to guidelines through surveys and focus groups
- Review: give comments on guidelines so that they will be relevant to patients
- Summarise: develop a version of guidelines that can be understood by everyone
Download a summary of our patient input process.
You can also suggest a topic for a task force. Is there a specific topic or issue in the diagnosis, treatment or management of a lung condition that you think healthcare professionals and/or people with a lung condition across Europe need recommendations on? Perhaps there is no existing guidance or you think more or different recommendations are needed.
To suggest a topic or for more information go to the online form.
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Bronchiectasis
Aim of Task Force
To develop the first ERS guideline on the management of adult bronchiectasis in Europe.
Patient Input
A patient advisory group of people with experience of bronchiectasis was formed and three representatives were included as full voting members of this Task force.
Summary
The guidelines were published in September 2017: European Respiratory Society guidelines for the management of adult bronchiectasis
A summary is also available in several languages on the bronchiectasis patient priorities website.
An article on research priorities (roadmap) was published in European Respiratory Journal in June 2016.
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Bronchiectasis in children
Aim of Task Force
To develop an international guideline on the management of bronchiectasis in childhood.
Patient Input
A patient/parent advisory group of people with experience of bronchiectasis in childhood has been formed and a survey is currently live for parents of children with bronchiectasis (or adults who had bronchiectasis as a child) to complete - go to survey.
Summary
The guideline will be published in an international respiratory journal in 2020.
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Bronchopulmonary dysplasia
Aim of Task Force
To develop a clinical practice guideline on the long term management of bronchopulmonary dysplasia (BPD).
Patient input
Patient and parent representatives are inputting into the activities of the Task force.
Summary
The guidelines will be published in a European Journal in 2019.
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Cardiopulmonary exercise testing (CPET)
Aim of Task Force
To provide an ERS Statement on standardisation of Cardiopulmonary Exercise Testing (CPET) in Chronic Lung Diseases.
Patient input
A survey was developed to find out more about the experiences of individuals with a lung condition who have undertaken CPET and the findings have been fed into the work of this Task Force. A patient representative has also been involved as a member of the Task Force team.
Summary
The Statement is due to be published in 2019.
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Chronic cough
Aim of Task Force
To look at the research on cough to decide if a cough that does not go away after 8 weeks should be treated as a separate lung condition, rather than as a symptom of another condition.
Patient input
People with the condition were invited to share their experiences via an online survey. A presentation on the patients’ feedback was given at ERS Congress 2013. The paper on the patient survey was published in the Lung Journal in 2015.
Summary
A factsheet on the topic has been produced and is available on the ELF website.
The full guidelines were published as a paper in the European Respiratory Journal in 2014 and available on the ERS e-learning site.
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COPD and physical activity
Aim of Task Force
To provide guidelines on physical activity for people with chronic obstructive pulmonary disease (COPD) by reviewing all the research on the topic.
Patient input
People with the condition were invited to review the guidelines and give feedback. The feedback was reported to the Task Force and will be used to develop a factsheet on topics covered in the guidelines.
Summary
A factsheet on topics covered in the guidelines is on the ELF website.
The full guidelines are published as a paper in the European Respiratory Journal and available on the ERS e-learning site.
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Electronic cigarettes
Aim of Task Force
To analyse the current and developing body of information on electronic cigarettes and deliver an evidence-based assessment.
Patient Input
People with respiratory conditions reviewed the literature search process and gave feedback on the research questions.
Individuals with respiratory conditions and experience of electronic cigarettes will be invited to review the draft statement.Summary
Electronic Cigarettes – Task Force report from the European Respiratory Society was published in the European Respiratory Journal in 2018.
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Telemonitoring in Home Mechanical Ventilation
Aim of Task Force
To analyse the current state of Home Mechanical Ventilation (HMV) services and agree a statement on standard procedures, equipment and facilities.
Patient Input
To include the patients’ perspective on people's experiences of home mechanical ventiliation (HMV) and their recommendations for current and future practice, a small working group of patients was asked to contribute to the development of the survey. People affected by the condition were invited to share their experiences via an online survey.
The research from this survey was published in ERJ Open Research: Attitudes and preferences of home mechanical ventilation users from four European countries: an ERS/ELF survey in 2017.
Summary
Tele-monitoring of ventilator-dependent patients: A European Respiratory Society Statement was published in European Respiratory Journal in 2016.
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Idiopathic Pulmonary Fibrosis
Aim of Task Force
To review guidelines on IPF published in 2011, to include new research on treatments and include the patients’ perspective.
Patient Input
People with the condition and patient organisations were invited to give feedback via focus groups held across Europe.
Summary
The feedback will be included in the guideline document. When the full guidelines are published the public version will be put on the ELF website.
The full guidelines will be available on the ERS e-learning site.
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People with lung conditions who smoke
Aim of Task Force
To find out if being diagnosed with a lung condition changes the way that smokers think about smoking and trying to quit, what they think of different treatments, and how doctors and nurses talk to them about smoking.
Patient input
People with lung condition who smoke were invited to share their experiences via an online survey.
The research will be published in a medical journal in 2016.
Summary
A factsheet on the topic has been produced and is available on the ELF website.
The full guidelines were published as a paper in the European Respiratory Journal in 2015 and available on the ERS e-learning site.
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Lung cancer
Aim of Task Force
To produce a statement on various aspects of quality in thoracic oncology care.
Patient Input
The Patient Advisory Group brought together for the lung cancer Patient Priorities pilot project provided input to this Task Force and their views were incorporated into the final statement.
Summary
ERS Statement on harmonised standards for lung cancer registration and lung cancer services in Europe was published in the European Respiratory Journal in October 2018. It highlights the need for a single dataset for use in pan-European data collection, as well as a manual of standards for European lung cancer services.
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Diagnosis of Primary Ciliary Dyskinesia
Aim of Task Force
To learn more about peoples’ experience of being diagnosed with PCD and produce guidelines to improve how people with PCD are diagnosed in future.
Patient Input
A patient survey was developed in collaboration with ELF. A small working group of patients were asked to contribute to the development of the survey and review the analysis. People affected by the condition were invited to share their experiences via an online survey.
A presentation on the patients’ feedback was given at ERS Congress 2015.
The survey research was published in the European Respiratory Journal in October 2016.
Summary
European Respiratory Society guidelines for the diagnosis of primary ciliary dyskinesia was published in European Respiratory Journal in 2016.
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Primary spontaneous pneumothorax (PSP)
Aim of Task Force
To improve the identification, treatment and recurrence of primary spontaneous pneumothorax (PSP) by developing European guidelines for healthcare professionals.
Patient Input
People with the condition were invited to review the guidelines and give feedback. The feedback was reported to the Task Force and used to develop a public version of the guidelines.
Summary
A factsheet on the topic has been produced and is available on the ELF website.
The ERS task force statement: diagnosis and treatment of primary spontaneous pneumothorax was published in European Respiratory Journal in 2015.
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Pulmonary Rehabilitation
Aim of Task Force
To provide guidelines on pulmonary rehabilitation for people with lung diseases
Patient input
People with the condition were invited to review the guidelines and give feedback. The feedback was reported to the Task Force and used to develop a public version of the guidelines.
Summary
The public version of the guidelines is now available to download. The full guidelines are published as a paper in the American Journal of Respiratory and Critical Care Medicine (AJRCCM) and available on the ERS e-learning site.
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Pulmonary rehabilitation policy
Aim of Task Force
To improve access to pulmonary rehabilitation services by developing an official policy statement on how pulmonary rehabilitation should be delivered worldwide.
Patient Input
A small working group of patients were asked to contribute to the development of the survey. People affected by the condition were invited to share their experiences via an online survey.
The survey findings were published in the European Respiratory Journal in 2015: The patient perspective on challenges to participating in pulmonary rehabilitation: An international web-based survey.
A poster discussion on the patients' feedback was given at ERS International Congress 2015, and a presentation at the Guideline International Network Conference 2015.
Summary
The patient feedback is referenced in the guideline document.
The full guidelines are published as a paper in the American Thoracic Society Blue Journal and available on the ERS e-learning site.
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Sarcoidosis
Aim of Task Force
To provide a guideline on sarcoidosis treatment.
Patient input
Two members of the ELF sarcoidosis patient advisory group were nominated as members of the Task force working group. A survey to individuals with sarcoidosis was disseminated across Europe to rate the importance of a range of treatment outcomes and the findings will be incorporated into the final Task force report.
Summary
The guideline is due to be published in 2019.
An article by the sarcoidosis patient advisory group: Sarcoidosis: patient treatment priorities was published in ERJ Open Research in December 2018 and highlights the findings of our patient survey, the findings of which will be reflected in the final guideline. -
Severe Asthma
Aim of Task Force
To provide guidelines on the diagnosis and treatment of severe asthma using the latest research and expertise from across Europe.
Patient input
People with the condition were invited to review the guidelines and give feedback. The feedback was reported to the Task Force and used to develop a public version of the guidelines.
Summary
The public version of the guidelines is now available to download here in English, in Serbian and in Portuguese. Other language versions can be accessed by changing the language of the website at the top of the page.
A factsheet of difficult-to-treat and severe asthma is also available.
The full guidelines are published as a paper in the European Respiratory Journal and available on the ERS e-learning site.