Patients

The DZL follows the request to focus more strongly on patient interests and cooperates closely with the Lung Information Service (LIS) based at the Helmholtz Center in Munich. The DZL supports the range of easy-to-understand information from research and clinical practice about pulmonary diseases. The scientists and doctors at the DZL sites take on an advisory role for editorial contributions of the LIS and individual patient inquiries sent to the LIS. The DZL and its sites together with the LID also organize events such as patient fora on special subjects.

Since 2016, the DZL invites representatives of patient organizations to yearly Round Tables. Scientists of the different DZL Disease Areas present recent activities and research results in summary reports. The Round Table offers the option of exchanging information and discussing matters of common interest.

Since September 2016, the DZL and the LIS have also been offering patients, their families, and interested members of the general public an overview of clinical studies currently carried out by DZL researchers. The internet-based list on the LIS website sets out the objectives, admission criteria, duration, and investigation/treatment methods of each study in a way that is easily understandable. Using this service, interested patients may contact the study sites directly, which facilitates access to clinical studies. This list of studies is updated and extended on a regular basis.

Particularly pleasant and important for strengthening the representation of patient interests within the DZL is the contribution of Dr. Pippa Powell, Manager of the European Lung Foundation (ELF), as a member of the Scientific Advisory Board of the DZL. Founded by the European Respiratory Society (ERS), ELF aims to bring together patients, the general public, and pulmonary professionals to make a positive contribution to respiratory medicine.

A success arising directly from this collaboration is the publication of the German translation of the European Patient Ambassador Programme (EPAP). This free online program has been developed for patients, their families, and carers. The course enables them to expand their skills in obtaining information and interacting with medical staff, political decision-makers, researchers, and the media. The program is suitable for patients with any kinds of diseases. It has been developed by ELF; besides English, French, Italian and Dutch, it is now also available in German.