Patient involvement in EU innovative research for chronic diseases

Patients’ representatives from more than 25 European countries participated in the very first stakeholder event of the new European Parliament on 17 June in Brussels, Belgium. Our Membership Officer Camille Bullot (pictured, left) attended this debate organised by our member, the European Federation of Allergy and Airways Diseases Associations (EFA).

“Does the innovative research for allergy and respiratory disease in the EU benefit patients” was the title of EFA’s event at the Parliament. It was co-hosted by Members of the European Parliament (MEP) Catherine Stihler (United Kindgom, S&D) and Petru Luhan (former MEP from Romania, EPP) with the participation of Karin Kadenbach (Austria, S&D).

EPF was invited to share our patients’ perspective on how could a European Patient Input Platform (EPIP) benefit EU projects. Such a model would ensure meaningful ways for patient organisations to participate in EU projects while guaranteeing individual inputs into the projects.

It is recognised that patients provide unique insights to research. However it is challenging to put this into practice as we need to ensure research is relevant to our needs and to obtain accurate risk-benefit assessments. “Patients should be much more involved in influencing the research agenda than they currently are,” stressed Ms Bullot. “There is a gap between patients’ priorities and what is actually being studied”, she continued.

EPF is confident that such a platform would increase our legitimacy in participating in EU-funded health research projects but we questioned the governance of such a platform. The view of one patient only is not enough: representativeness will be key to represent the view of all the patient community across diseases.

An alternative to an EPIP platform would be to develop guidelines on patient involvement. This could draw upon existing good practices in this area, and our Value+ project could be one of them. Patients should also receive capacity building courses to be prepared for their participation much like our Academy EUPATI that provides training for patients involved in the drug development process.

“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.

Read EFA’s press release about this event:

Contact: Camille Bullot, Membership Officer,

© EFA picture credits