EFOEUPATI

Ensuring the future of EUPATI beyond 2020

FACTS & FIGURES

Start Date
End Date
Call
IMI2 - Call 11
Grant agreement number
806995

Type of Action: 
RIA (Research and Innovation Action)

Contributions
IMI Funding
365 243
EFPIA in kind
238 800
Total Cost
604 043

Summary

IMI’s EUPATI project delivered a wealth of resources to support and educate patients who wish to become more involved in medical research and drug development. These include the patient expert training course, the online multilingual toolbox, and the network of national platforms. The goal of EFOEUPATI is to develop a viable business model to ensure the viability of these resources in the medium to long term. Among other things, the project will create a patient education and engagement portal that will host relevant information and resources for patients and other stakeholders. This will ultimately replace the current EUPATI website. EFOEUPATI will also strengthen the coordination and impact of the existing EUPATI national platform network by promoting collaboration and knowledge exchange.

Achievements & News

A school for patients? Yes, you can be an expert in that
January 2020

If patients are to be involved in medicine R&D, it’s to everyone’s benefit that they understand how the process works. Tamás Bereczky is a course coordinator for the IMI-funded EUPATI, an ‘academy’ that helps turn patients into patient experts, so that they can contribute as equals to the drug development process. ###He is also a vocal campaigner for the rights of people living with HIV/AIDS and has a PhD in the social psychology of patient advocacy.

‘The tradition of patient involvement in science and research and development originates to a large extent from the HIV tradition and to some extent, breast cancer,’ explains Tamás in an interview with the IMI Programme Office. ‘These are the two pioneering fields where this kind of work started.’ EUPATI, he says, was a major step forward when it was launched in 2012.

‘EUPATI was the first project where IMI consciously did something with patients, for patients,’ he says. ‘It's not about medicine development or technology, it is specifically for patient education in a public private partnership form, which at the time was very new.’ EUPATI has enjoyed success, with 154 graduates, several courses per year for patients, industry and academia representatives, and expansion into 19 countries.

In the interview, Tamás looks back on his own experiences of patient advocacy, which started when he was diagnosed with HIV 15 years ago. ‘I got very scared, and I suddenly realised that there wasn't any information available in my native Hungarian. So I started by translating stuff and publishing it on my blog and then I made a website… Step by step I became an advocate; I realised that this is actually my calling. So I started by disseminating information and then I became a member of the European Aids Treatment Group and then one thing followed the other.’

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EFPIA companies
  • Abbvie Inc, North Chicago, Illinois, United States
  • Bayer Aktiengesellschaft, Leverkusen, Germany
  • Glaxosmithkline Research And Development LTD., Brentford, Middlesex, United Kingdom
  • Novartis Pharma AG, Basel, Switzerland
  • Novo Nordisk A/S, Bagsvaerd, Denmark
  • Pfizer Limited, Sandwich, Kent , United Kingdom
  • UCB Biopharma SRL, Brussels, Belgium
Universities, research organisations, public bodies, non-profit groups
  • European Forum For Good Clinical Practice, Brussels, Belgium
  • Forum Des Patients Europeens, 1040, Belgium
  • Irish Platform For Patients' Organisations Science And Industry Limited By Guarantee, Dublin, Ireland
  • Kobenhavns Universitet, Copenhagen, Denmark
Patient organisations
  • European Aids Treatment Group Ev, Duesseldorf, Germany
  • European Patients’ Forum (EPF), Brussels, Belgium
Project coordinator
Matthew May
Forum Europeen Des Patients (Fpe)