EUPATI: Guidelines on Patient Involvement in Medicines’ Development


Patient involvement in the whole life-cycle of a medicines is a key matter in patient empowerment, but can also bear some challenges and threats. A recent article from various EUPATI contributors proposes some new ideas on how to make it clear and rigorous.

The work of EUPATI’s has always been based on the understanding and promotion of the systematic involvement of patients and their organisations in biomedical research and development, as much as in the medicines’ regulatory processes.

The concept of patient involvement grew in importance and popularity over the recent years, playing an important role in the development of a new mindset towards more patient-centred approach. Different avenues of patient involvement have already been investigated, making a clear and detailed model of proper methods to involve patients a necessity, or at least a welcome attempt.

In a recently published scientific article, the EUPATI contributors Jan Geissler, Bettina Ryll, Susanna Leto di Priolo and Mary Uhlenhopp detail the rationale and benefits for all parties of involving patients and patient organisations at all stages of medicines’ development. The article also lays out patient input as becoming increasingly important in pharmacovigilance, i.e. in monitoring the safety and reliability of medicines once on the market.

One of the key objectives of the project is to see more scientific papers coming from the EUPATI community, enabling patients to make their voices heard in scientifically reliable ways. EUPATI has helped patient communities develop their skills and abilities to be able to produce scientific output on par with their academic and industry peers in the project. Creating a level playing field for all stakeholders is undoubtedly one of major outcomes of partnerships such as EUPATI.


The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organisations. EUPATI focuses on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and to improve the availability of objective, reliable, patient-friendly information for the public.