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Patient involvement in ERS Task Forces and projects, May 2016

Patient involvement in ERS Task Forces and projects, May 2016

We are currently involved in several European Respiratory Society (ERS) task forces and projects. Here are the highlights of recent patient involvement activities.

ERS has just announced the next round of task forces and projects that they have accepted for funding. Several would like to involve patients in their work to produce new guidelines or statements on lung conditions and issues, such as sleepiness and driving.

Over the coming months we will be speaking with the leaders of these new projects to discuss how people with lung conditions can contribute. We will share any opportunities in this newsletter, on our website and via the European Patient Ambassador Programme.

Bronchopulmonary dysplasia 

We attended the first meeting (pictured above) for this Task Force in Rotterdam in April, along with a representative of the Dutch Lung Foundation (Longfonds) and a Dutch parent of a child with bronchopulmonary dysplasia (BPD).

ELF, Longfonds and the parent discussed how parents and adolescents with BPD could be involved in the Task Force. Together, we helped to decide the topics which the new guidelines would cover and are setting up a patient advisory group to make sure the parent and patients’ perspective are included at all stages and in the final guidelines when published. 

If you would like to join this advisory group, email Jeanette Boyd.

Interventional bronchoscopy

We have conducted a parent and child-focused literature review for an ERS Task Force looking at how the technique of bronchoscopy can be used effectively in children. For example a bronchoscopy can be performed to remove an object that a child breathes in by accident and causes them to have difficulty breathing.

The Task Force will include recommendations from the experiences of parents and children in the new guidelines that they develop for healthcare professionals. These guidelines will be published in 2017.

Home Mechanical Ventilation 

We are still writing up the results of the survey we conducted with people using home ventilators across Europe. As part of this process, we submitted the results, known as an abstract, for presentation at the ERS International Congress in September, and have been invited to give a short oral presentation.

We have also written an article on some of the survey results to feature in a magazine that is produced for delegates at the ERS International Congress, called the RED magazine. We will share this article with the survey respondents after the Congress.

 

Find out more about all the Task Forces and projects we are working on and how patients are contributing.