Reliable Information

Can I trust EUPATI?

EUPATI stands for quality, ensuring transparency, accessibility and factual accuracy. To do this EUPATI has established an independent international ethics committee, regulatory advisory board, and project advisory board and works with LUTO, independent experts from the University of Leeds specialised in the communication of science to the lay public.

EUPATI builds on the strength of having a diverse group of stakeholders from different stages and perspectives of the medicines development process including patient advocates, academics, pharmaceutical industry professionals, regulators, and professionals from independent non-profit organisations. The expertise and insights from EUPATI consortium members, network members and external advisors was supported by qualitative and quantitative research as well as a systematic literature review conducted by EUPATI prior to content production.

In combining this collective knowledge, we were able to produce a high quality product which encompasses more than 3.000 content items. A list of contributors to the EUPATI educational information is available on the website.

All content has been written by experts coming from different backgrounds, who have worked within the subject area. It was then checked by further experts who come from a different background working for a different stakeholder group. For example content written by a clinical researcher in industry would be checked by an academic or patient expert. To check for factual accuracy, transparency, neutrality, and readability the content was reviewed by our independent review boards, experts, and committees. For example, content related to regulatory affairs was reviewed from staff members of regulatory authorities in Germany, Italy, Switzerland, Spain and Ireland. HTA content was reviewed by HTA experts from HTAi and EUnetHTA . Material on ethics was reviewed by ethicists of EUPATI’s Ethics Panel. To validate whether the material in the online modules is understandable and readable by the health-interested public, EUPATI has also tested significant proportions of its material with patient advocates, including testing screen reader accessibility of the website with Fighting Blindness Ireland. Feedback from all reviewers has has been incorporated in editorial cycles of EUPATI’s content.

An editorial group chaired by DIA (a global non-profit providing education and discussion forums to further pharmaceutical development) and consisting of representatives from Bayer, University of Copenhagen, University of Bochum, Rare Diseases Europe (EURORDIS), European AIDS Treatment Group (EATG), GlaxoSmithKline and the Irish Platform for Patient Organisations, Science and Industry (IPPOSI) reviewed all comments and changes and conducted consistency, style and factual reviews of the material.

Since 2014, all of the content has been used in the delivery of the EUPATI Patient Expert Training Course through the development of a syllabus, the transformation into a curriculum in correspondence with learning outcomes, and then a division into topics organised in modules and lessons. The content has been further adapted and improved based on the feedback of the participants of the first course. Final adaptations were then made in the transformation of the training course material into standalone articles of the EUPATI Toolbox at www.eupati.eu which were reviewed by the editorial board before being translated in to French, German, Italian, Polish, Russian, and Spanish by specialists Lionbridge. To validate the quality of the translation, content was independently reviewed and revised (where needed) by native speakers of the languages from the EUPATI network.

To read about our production processes in detail you may download our process guides. Be sure to read them both if you are interested in the Library/Toolbox.