To mark World Chronic Obstructive Pulmonary Disease (COPD) Day 2013, the European COPD Coalition (ECC) (1), and the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) (2) organised an event (3) under the auspices of the Lithuanian Presidency of the Council of the European Union (EU). The conference entitled “What role for diseases and patients in shaping Horizon 2020? A COPD case study of patient involvement” discussed the EU Framework Programme for Research and Innovation – Horizon 2020, and standards of care for COPD, with a patient’s perspective.
COPD (4) was taken as a case study, since this chronic lung disease is marked by increasing prevalence among the European population and is one of the leading causes of premature deaths worldwide and yet, awareness of the COPD is largely insufficient.
The degree in which Horizon 2020 – the financial instrument implementing the Innovation Union: an EU initiative aimed at securing Europe’s global competitiveness- is fit to accommodate disease specific research featured high during the debate. “Given the prevalence and societal and economic burden of COPD, there should absolutely be some kind of ring-fencing of funds for specific diseases such as this that has been underfunded to date. In such areas, researches would otherwise find it hard to compete with larger, more established research fields. Additionally, prevention and patient priorities have been neglected for far too long and should be moved up dramatically in the agenda,” said Mike Galsworthy, from the University College London’s Department of Applied Health Research.
“The clock is ticking when it comes to tackle the acute deficiencies in the way that COPD is treated across Europe.Patients themselves should be given a larger role in shaping research, for instance, in prompting actions – i.e. to be better integrated in EU projects – so that policy-makers and healthcare professionals do not trip over the same stone again when delivering care to patients,” pointed out Isabel Saraiva, COPD patient from the Portuguese Association of people with COPD and other Chronic Respiratory Diseases (RESPIRA).
EFA’s report ‘Minimum Standards of Care for COPD Patients in Europe’ (5) was launched during the conference. “As the EFA’s paper highlights, people suffering of COPD and patients of respiratory diseases in Europe have been enduring for decades large disparities in the standards of care received. To overcome these inequalities, patient-driven standards on prevention, diagnosis, care and rehabilitation have to be better measured. There is an urgent need to use this data to drive and improve patients outcomes,“ stated Rupert Jones, General Practitioner for the International Primary Care Respiratory Group.
Over the course of the event, EFA’s booklet ‘Enabling Air Travel with Oxygen in Europe’ (6) was presented as a case study for ongoing discrimination against patients with chronic respiratory diseases.