EUPATI has been a game changer for patient involvement - Closing Report of EUPATI 2012-2017 available now

EUPATI has been a game changer for patient involvement - Closing Report of EUPATI 2012-2017 available now


To train patients, patient advocates and the lay public about those topics, educational material has been developed in 7 languages (English, German, Spanish, Polish, French, Russian and Italian), serving 12 European countries with those native languages (UK, Ireland, Malta, France, Luxemburg, Belgium, Switzerland, Germany, Austria, Spain, Poland and Italy). With Russian, the Patients’ Academy reaches a large population within countries in Central and Eastern Europe where a relatively large part of the population speaks or at least understands Russian. A Danish version of the material will be published soon

Involving patients in research can hugely benefit the medicines development process: by bringing in their priorities and perspectives, patients can contribute to developing better treatments for them and others. Greater patient involvement in R&D will boost the efficacy and safety of new treatments and increase public support for medical research.

EUPATI has been a game changer for patient involvement in medicines R&D, and continues to be one of the key drivers of the public debate on patient involvement in medicines R&D on a pan-European level in all stakeholder groups including industry, regulators, academic researchers, ethics committees, HTA bodies and evidenced in the media and conference footprints that EUPATI had in 2016.

Empowered patient advocates
EUPATI has empowered European health-interested citizens and patient advocates to become main actors in R&D. Academic and industry researchers have intensified discussions and implementation of patient involvement in their research activities (in addition through related activities like Patient-Focused Medicines Development, PFMD), and regulators have started to network on best practice in patient involvement in regulatory processes, following the EUPATI workshop held in Berlin in July 2016.

Most patient-centric R&D communities world-wide
Inter alia, EUPATI has increased the competitiveness of Europe and helped establish Europe as a preferred place for medicines research and development by developing into one of the most patient-centric R&D communities world-wide.

Self-growing key resource
With its educational resources on and its highly trained group of EUPATI Fellows, EUPATI has provided the self-growing, key resource for any kind of research that relies on knowledgeable patients, patient organisation representatives, patient advocates and patient experts.

Rethinking the way patients understands and get involved in medicines development
The European Patients’ Academy on Therapeutic Innovation (EUPATI) was funded within call 3 of the Innovative Medicines Initiative in the period February 2012 to January 2017.

It aimed to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement therein.

Armed with a deeper understanding, patient experts and advocates will be empowered to work effectively with the relevant authorities, healthcare professionals and industry to influence the medicines development process for the benefit of patients.

The main objectives of the consortium, led by the European Patients’ Forum, which includes patients’ organisations, academic groups, NGOs and pharmaceutical companies were:

  • to develop and disseminate accessible, well-structured, comprehensive, scientifically reliable and user friendly educational material for patients on the processes of medicines R&D, especially on end-to-end R&D processes, i.e. non-clinical R&D, clinical trials, personalised medicine, efficacy and safety assessment, risk benefit assessment, health economics, HTA and patient involvement in these processes,
  • to increase the capacity of “patient experts” and well-informed patients in patient organisations to be effective advocates and advisors in medicines research and development,
  • to empower patients to provide appropriate patient-relevant advice and insight to industry, academia, authorities and ethics committees.

Read the full closing report here

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