JHMRF was represented for the second year running at this prestigious international meeting of lung health specialists.
Trustee Kate Hill is a member of the European Respiratory Society (ERS) Patient Advisory Committee and, although the main respiratory diseases like Asthma and Chronic Obstructive Pulmonary Disease are a major focus of ERS interest and activity, it is nonetheless important that rare diseases like mesothelioma are also part of this forum.
A senior research fellow at the University of Leeds, Dr Hill has been working closely with the European Lung Foundation (ELF) to develop an online training programme for patients and lay members of the public who want to become advocates in health care and research.
ELF was founded by the European Respiratory Society in 2000 with the aim of bringing together patients, the public and respiratory professionals to positively influence respiratory medicine. Dr Hill is involved in a National Institute of Health Research funded project in the Leeds, York, Bradford CLAHRC (Collaboration for Leadership in Applied Health Research and Care). Speaking about the collaboration with ELF, Kate said, “Our Yorkshire collaboration has provided some great opportunities to build partnerships outside the research community in which I usually work.
“At the ERS Congress last year I became aware that ELF were planning a patient and public involvement programme with very similar aims to the one we had in mind for the CLAHRC. It made sense to join forces and develop a programme that could be used by patients with any type of condition.”
The main focus of the European Patient Ambassador Programme (EPAP) is to help people build the skills they need to find and organise information about health and research, and to gain knowledge of healthcare systems and research methods to enable them to become effective partners in influencing health care services and medical research. The training programme will be modular and will allow people to learn at their own pace. A pilot version of EPAP was launched at the ERS Congress meeting but further feedback will be needed from the user group at which the programme is aimed before the final version is ready to go live on the web. If you would like to find out more about the ERS Patient Advisory Committee or the EPAP project visit the ELF website or contact Dr Hill via the JHMRF email address.