ELF is currently involved in 10 Task Forces and a number of additional projects.
Here are the highlights of recent patient involvement activities.
ELF is facilitating patient involvement in a number of bronchiectasis projects and has established a patient advisory group (PAG) to support this.
A Task Force meeting was held in Barcelona earlier this month. Three members of our bronchiectasis PAG are members of this Task Force and are working closely with 20 healthcare professionals to develop guidelines.
The guidelines will include evidence-based recommendations and additional information based on the experiences of patients. This meeting reviewed data from the literature selected as evidence and topics to be included in the guidelines were agreed.
The guidelines are due to be completed by October 2016.
We are also working on an exciting collaborative project which includes physicians, the European Bronchiectasis network (EMBARC), primary care experts, physiotherapists, surgeons, basic scientists and patients.
The project aims to create two online educational platforms providing much-needed information about bronchiectasis for physicians and patients. ELF’s patient priorities programme aligns clearly with the objectives of this project and therefore the bronchiectasis patient education platform will be developed using this model, which also focuses on creating patient-led online information.
The working group for this initiative met in Barcelona to plan the development of these platforms and included six patients from the Netherlands, Spain, Switzerland and the United Kingdom (in person and by telephone) to contribute to the plans for developing both platforms. Ongoing consultation and development work will now take place, with both platforms to be launched in October 2016.
ELF is currently writing up the results of the survey that it conducted with people using home ventilators across Europe, and has submitted the results for presentation at the ERS International Congress in September.
The ERS Task Force on idiopathic pulmonary fibrosis (IPF) has been putting together all the different sections of the final document, including a section on the areas that patients felt were most important. We are hoping that this paper will be completed and published before the end of 2016.
At the end of 2015, the patient organisations involved in the focus groups provided feedback on the list of key areas of most importance to patients. This feedback will be used in a separate paper on communication and supporting therapies for IPF.
Following workshops in Brussels and Amsterdam last year, in which members of our lung cancer PAG joined with healthcare professionals to discuss their priorities for treatment and care, a draft statement is now being written.
This joint professional-patient statement on multi-disciplinary team working for lung cancer care in Europe aims to be published later in 2016.
ELF presented the results of the questionnaire on pulmonary rehabilitation services for people with lung conditions at both the ERS International Congress and the Guideline International Network Conference in 2015.
In 2016 these results will be written up for publication and a factsheet on pulmonary rehabilitation will be produced in 8 languages.
Photo above: Patient representatives at a meeting about bronchiectasis educational programme in Barcelona
