The magazine, Longwijzer, features interviews with U-BIOPRED lead, Peter Sterk, and Patient Involvement Platform members, Juliette Kamphuis and Martine Puhl in its September edition.
Longwijzer, a quarterly magazine produced by the Dutch Lung Foundation (Longfonds), celebrates the advances made by U-BIOPRED in asthma phenotyping, and the involvement of people with asthma in ensuring the study’s success.
Both Martine and Juliette are volunteers with Longfonds. They use their experience of asthma to represent others, for example, by helping Longfonds scientific panel to decide which asthma research projects to fund.
The U-BIOPRED Patient Input Platform has worked throughout the 5-year project to make sure that the patients who take part in the clinical study understand and feel comfortable throughout their involvement. For example, by producing factsheets to help them decide if they want to volunteer for the bronchoscopy or rhinovirus parts of the project.
In the article, Peter, Juliette and Martine agree that the project has been a great success, in part due to the involvement of patients at the project design, ethics and information level. However, they agree that patient involvement should go still further, with future projects including patients on the managing board, and funders allocating budget specifically for patient involvement throughout the life of the project. They also see the need for a patient organisation to coordinate, facilitate and consolidate the input of patients in the scope of the whole project.