Patients’ representatives from more than 25 European countries participated in the very first stakeholder event of the new European Parliament, co-hosted by Members of the European Parliament (MEP) Catherine Stihler (United Kindgom, S&D) and Petru Luhan (former MEP from Romania, EPP) along with the participation of Karin Kadenbach (Austria, S&D).
The event, organised by EFA, included presentations of multiple EU projects where it is a partner, including AirPROM, EARIP, MeDALL and U-BIOPRED. U-BIOPRED was co-presented by Dr. Louise Fleming (U-BIOPRED Paediatric Lead) and David Supple (U-BIOPRED Patient Input Platform chair). While Dr. Fleming overviewed the U-BIOPRED objectives and major accomplishments to date, Mr. Supple commented on his own experience in the project as a patient representative and the importance of the Patient Input Platform (PIP) in the work to date of the project.
After the presentations of EU projects, panel sessions invited debate which provided the EU institutions’ representatives, healthcare practitioners, academia, not-for-profit organisations, and expert patients with the opportunity to share their visions on how innovative EU funded research can positively impact the lives of asthma, allergy and chronic obstructive pulmonary disease (COPD) patients in Europe. The first panel session, moderated by Mr. Supple, asked how these EU-funded research projects could make an impact on the lives of European patients and healthcare systems.
“Health and social systems have to adapt to the chronic diseases challenge. Strengthening and empowering patients is key in this context”, said Michael Hübel, from the European Commission’s Health and Consumers Directorate General. In Horizon 2020, allergy and respiratory diseases do not receive specific attention in terms of funding as they are framed into bigger challenges common to all diseases. Patient perspective is crucial for policy makers, as “research priorities not only produce evidence but also indicate political importance”, pointed out Zoltan Massay-Kosubek from the European Public Health Alliance (EPHA).
The second panel session, moderated by Scott Wagers from BioSci Consulting, focused on the importance of patient involvement within EU-funded research and specifically the idea of a ‘European’ level PIP. “Patients should be much more involved in influencing the research agenda than they currently are,” stressed Camille Bullot from the European Patients’ Forum, “there are gaps between patients’ priorities and what is actually being studied”.
“Patients have the right to be involved in all decisions influencing their health. Their expertise and vision should always be requested and taken into account, as they know better than others what it means to live with the disease and which kind of risks they are willing to take to have benefits in exchange”, summarised MEP Catherine Stihler.
A final event report and photo gallery are forthcoming on the EFA website.