ERN-LUNG Project Helping People With Rare Lung Diseases

“Patient journeys” is an initiative designed to help patients and clinicians  improve care for rare lung diseases, including pulmonary hypertension (PH).

The project, announced in a press release from the European Reference Network on Rare Respiratory Diseases (ERN-LUNG), presents testimonies showing the clinical history and needs of patients through the various phases of diagnosis, treatment and care.

When patients are involved in discussions about their healthcare, the relevance and quality of care services are improved and healthcare providers are able to meet patients’ needs more effectively. With that in mind, the ERN-LUNG, together with the European Organisation for Rare Diseases (EURORDIS) and ERN-LUNG Patient Advisory Group (ePAG), created  “patient journeys.”

The project has a patient-centered approach, and its goals are to promote more meaningful patient involvement, to create discussion within the patient community, and raise awareness about European Reference Networks (ERNs).

ERNs are patient-centric networks of European healthcare providers and patient organizations focused on patient care, advocacy, education, research and knowledge-sharing.

ERN-LUNG, in particular, is focused on helping patients find information about rare lung diseases, such as PH. This network also plays an important role in guiding patients to the most suitable treatment centers. Patients’ native language, as well as their location or distance to their home area, are some of the aspects to be considered.

ERN-LUNG also promotes dialogue among experts, encouraging them to discuss specific cases, share their experiences, and refer patients to other centers for the most appropriate treatment.

The journeys can be used by both patients and clinical experts. Patients can identify their unmet needs and communicate their experience to clinicians. Patients also are able to identify areas that can be changed or improved in their care. Clinicians can use the journey to explain to newly diagnosed patients the usual clinical pathway for their disease.

Four patient journeys are already completed. One of them is about PH. The other three are about sarcoidosis, primary ciliary dyskinesia, and idiopathic pulmonary fibrosis.

A practical example given by the ERN-LUNG is the case of a woman who was diagnosed with pulmonary thromboembolism (the presence of blood clots in blood vessels in the lungs). She needed to find an expert center where a pulmonary thromboendarterectomy — a surgery to removes blood clots — could be performed. Since this surgery requires an expert team and is not performed in all hospitals, she wrote to ERN-LUNG ([email protected]) asking for help.

ERN-LUNG and its experts in PH, initially referred the patient to an ERN-LUNG expert in Italy, where she was living. However, the patient was born in Spain and wanted to have the surgery done closer to her family. Referrals to two ERN-LUNG expert centers in Spain were quickly provided so the patient could choose one closest to her family.

According to the patient, she will make an appointment to have her surgery performed by the experts chosen as soon as the COVID-19 pandemic situation allows.