History

The European Patients’ Academy on Therapeutic Innovation (EUPATI) was funded within Call 3 of the Innovative Medicines Initiative (IMI) from 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 within. Armed with a deeper understanding, patient experts and advocates are 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 (EPF), 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 research and development.
  • Increase the capacity of “patient experts” and well-informed patients in patient organisations to be effective advocates and advisors in medicines research and development.
  • Empower patients to provide appropriate patient-relevant advice and insight to industry, academia, establishments and ethics committees.

Results and Success of IMI-EUPATI

The EUPATI project generated educational resources in six key areas, namely

  • Discovery of Medicines & Planning of Medicine Development
  • Non-Clinical Testing and Pharmaceutical Development
  • Exploratory and Confirmatory Clinical Development
  • Clinical Trials
  • Regulatory Affairs, Medicinal Product Safety, Pharmacovigilance and Pharmacoepidemiology
  • HTA principles and practices

To ensure quality, factual accuracy, neutrality, accessibility and readability of the material, EUPATI established a robust content production, review, and approval process. All content has been released under the Creative Commons license.

The IMI-EUPATI project addressed two main audiences. The EUPATI Patient Expert Training Course was designed for the ‘Expert Level’. The ‘Education Level’ material in the EUPATI Toolbox on Medicines R&D addresses patient advocates, patients, and the health-interested lay public.

Two EUPATI Patient Expert Training Courses, each with a duration of over 14 months, were conducted within the timeframe of IMI-EUPATI and two more have followed since the end of the project. The impact of the EUPATI Patient Expert Training Course has been important, evidenced by the leading roles the EUPATI Fellows have taken in the debate on patient involvement in R&D.

EUPATI’s second core product, the EUPATI Toolbox on Medicines R&D, was launched in January 2016. The EUPATI Toolbox covers almost all topics of the EUPATI Patient Expert Training Course but is provided in 9 languages. Across all languages, the EUPATI Toolbox contains articles, presentations, videos, webinars, images, factsheets, video interviews, a documentary, infographics, glossary items and acronyms. More than 3.5 million individual users have accessed the EUPATI Toolbox by May 2020. The EUPATI toolbox has become the key knowledge resource and reference for any party interested in learning about medicines Research and Development.

Initiated during the IMI-project duration, the network of EUPATI National Platforms (ENPs) continues to grow. Currently ENPs have been set up in 21 countries (as of May 2020). The National Platforms have organised and are preparing a variety of activities, including webinars, information days, trainings, and social media campaigns.

EUPATI has published four guidances on patient involvement in R&D. Each guidance document recommends working methods and processes, and suggests specific activities and areas for patient involvement.

Legacy of IMI-EUPATI

EUPATI, building on the strong foundation laid out by IMI-EUPATI, has been a game changer for patient education and patient engagement in medicines R&D and continues to be one of the key drivers of the public and citizens’ debate on this topic at a pan-European level, bringing together all stakeholder groups. EUPATI has empowered European health-interested citizens and patient advocates to become main actors in R&D.

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

EUPATI is a success story created with the support of IMI, its partners and the patient community, directly based on the results of the original project, but also taking into account the evolution of the patient engagement landscape. It has built a viable business model and continues to expand its activities in Europe and worldwide.

Consortium Partners

The content and the EUPATI.eu platform produced under IMI-EUPATI are the products of a pan-European public-private partnership of diverse stakeholders, involving patients and patient representatives, academia, regulatory bodies, independent government institutions, non-profit organisations, and pharmaceutical companies. Please see here the list of the IMI-EUPATI Consortium Partners.