EUPATI is a Consortium of 29 organisations, led by the European Patients’ Forum comprising a combination of pan-European patient organisations, academic and not for profit organisations expert in patient and public engagement and EFPIA member companies.
Project aims: EUPATI 2017 Programme builds on the EUPATI project (February 2012- January 2017), which aimed at providing scientifically reliable, objective, comprehensive information to patients on medicines research and development and to increase the capacities and capabilities of well-informed patients and patient organisations to be effective advocates and advisors in medicines research, e.g. in clinical trials, with regulatory authorities and in ethics.
Project leader: European Patients Forum (EPF)
Main partners: Steering Group includes EPF, Bayer, EATG, ISPOR, Novo-Nordisk, GSK, Eurordis, IPPOSI, and EFGCP. The consortium (in development), includes currently about 30 different stakeholders from patient organisations, academia, regulators and industry.
EATG participation: Member of Steering Group & ‘Futures group’, participation in project communications and dissemination.
Duration: February 2017 – December 2019
Main funding source/programme: Industry, public partners and EIT
Contact person(s): Giorgio Barbareschi (office) at firstname.lastname@example.org; Maria Dutarte (office) at email@example.com; Kristjan Jachnowitsch (office) Kristjan.Jachnowitsch@eatg.org, Tamás Bereczky (EATG membership) at firstname.lastname@example.org.
Main outcomes: The EATG has been part of the development of the EUPATI online Toolbox ( https://www.eupati.eu/) which is targeted to patients advocates interested in understanding the benefits and practicalities of patient involvement in medicines research. The EUPATI toolbox is now available in 8 languages (Dutch, English, French, German, Italian, Polish, Russian, Spanish). Please find a webinar demonstrating it’s use here.
The toolbox also contains so-called ‘Starter Kits’, which are based on existing content from the EUPATI Toolbox and additional links. Each of the starter kits contains a selection of PPT slides which you may use to educate patients/advocates about the “basics” in that area, e.g. in a two-hour to one-day seminar.
The following Starter-Kits are available at the moment:
- Setting research priorities
- Ethics Committees
- Data Monitoring Committees
- Trial Steering Committees
- Scientific advice
- Protocol design
- Product information, informed consent and patient information to trial participants
- Medicines safety
- Health Technology Assessment
Get involved in EUPATI in your country!
EUPATI has established National Platforms in several countries across Europe including Austria, Belgium, Denmark, France, Germany, Greece, Ireland, Italy, Luxembourg, Malta, Norway, Poland, Portugal, Romania, Slovakia, Spain, Switzerland and the UK. There are also many other EUPATI National Platforms hoping to come on board in the near future. Read more here: https://www.eupati.eu/eupati-network/
Joint EATG + EUPATI Webinar about using the EUPATI Toolbox
EATG membership survey about the use and utility of the EUPATI Toolbox
This survey has explored the opinion of EATG members working as peer educators in patient communities. The report confirms the utility and practical applications of the Toolbox in real-life educational settings, and some of the recommendations will also be used to further develop the EUPATI content database.