Patient-led EUPATI launched, educating patients about medicines R&D

The European Patients' Academy on Therapeutic Innovation (EUPATI) was successfully launched on 27 March 2012 during the DIA EuroMeeting in Copenhagen.

Over the next five years, this innovative patient-led academy will lead an ambitious project to develop educational material, training courses and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development.

It will address topics like personalised and predictive medicine, design and conduct of clinical trials, drug safety and risk/benefit assessment, health economics as well as patient involvement in drug development. The educational resources will be provided in English, French, German, Spanish, Polish, Russian and Italian, targeting twelve European countries.

In its special satellite session held during the DIA EuroMeeting, the President of the European Patients’ Forum (EPF), Anders Olauson, highlighted the huge tasks ahead for research.

Personalized medicine, discovery of molecular pathways, translational medicine, genome sequencing and pressure on healthcare systems require a complete reassessment of how researchers, regulators, industry and patients collaborate to drive innovation in Europe. “We patients need therapeutic innovation urgently.

While there are some success stories, only a small number of life-threatening diseases, for example in rare cancers and rare diseases, allow patients to live a normal and long life”, he added.

The EPF’s President anticipates that the Patients’ Academy represents a paradigm shift in engaging patients in the medicines development processes to become equal partners. “Patient organisations have a crucial role in R&D - they can provide unique insights that other stakeholders like doctors, industry, researchers don't have.”

The Patients’ Academy will build expert capacity among well informed patients and caregivers through training so they can engage in medicine development discussion.

The Academy will also increase public understanding of medicines R&D through the creation of a leading public library on patient information. A strong consortium of four pan-European patient organisations, academic partners and non-governmental organisations, in partnership with key experts in drug development from the private industry, has taken the task on this highly ambitious project.

Michel Goldman, Executive Director of the Innovative Medicines Initiative (IMI) which supports EUPATI, emphasised the importance of the project: “Patients play a central role in EUPATI, and this will help to ensure the success of the project. As an honest broker, IMI supports their collaboration with academia, regulators and industry”.

Information developed by the Patients’ Academy will be scientifically reliable, accessible, well-structured and user-friendly. Objectivity, transparency and independence are of course vital for this project.

The Patients’ Academy is committed to deliver on the highest standards in publication ethics, professional integrity, transparency, independence and trust. “We are grateful to have expert advice in our advisory panels, consisting of four key regulatory bodies EMA, MHRA, SwissMedic and BfArM as well as key experts in bioethics, genetics, HTA, economics, evidence based medicine and patient advocacy, complemented by an Ethics Panel”, added Jan Geissler, Director of the EUPATI Project.

Per Spindler, Director of BioPeople at the University of Copenhagen and co-leader of the “Content Production” work package in EUPATI outlined how the Patients’ Academy will develop its educational programme. “We will develop material for three different audiences. First, patient experts will be empowered through an academic training programme to engage with researchers and authorities.

Second, patient organisations will be provided with an educational toolbox to train their own constituency, containing resources in a variety of formats like booklets, presentations, e-learning, webinars and videos. Third, the lay public access the EUPATI Internet Library loaded with educational material in Wiki-like websites and Social Media resources.” In a first step, in order not to duplicate efforts, pre-existing educational resources will now be identified and reviewed. Informational needs of the community will then be analysed through surveys and focus groups. Afterwards, EUPATI modules will be adapted, developed, translated and disseminated to the three audiences.

Ingrid Klingmann, President of the European Forum for Good Clinical Practice (EFGCP) and co-leader of the “EUPATI Network” work package, highlighted how the Patients’ Academy will engage with the community and build a pan-European network involving all those stakeholders that are currently not part of the project consortium. “We want to be very inclusive, building a pan-European network through annual conferences, regional workshops, patient-led national platforms and a strong digital infrastructure”, says Klingmann. The EUPATI Network will be launched within the next six weeks, while the dialogue on platforms like Facebook, Twitter, LinkedIn and Google+ has already started.

Facts about EUPATI

The consortium project "European Patients‘ Academy on Therapeutic Innovation" (EUPATI), funded by the Innovative Medicines Initiative, will provide scientifically reliable, objective, comprehensive information to patients on medicines research and development. It will increase the capacities and capabilities of well-informed patients and patient organisations to be effective advisors in medicines research, e.g. in clinical trials, with regulatory authorities and in ethics committees. Started on 1 February 2012, the patient-led academy will develop educational material, training courses and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development. Topics will include personalised and predictive medicine, design and conduct of clinical trials, drug safety and risk/benefit assessment, health economics as well as patient involvement in drug development. EUPATI will provide educational material in seven European languages targeting twelve European countries. Initial educational material will become available after the first 18 months of the project. The Consortium includes pan-European leaders in patient advocacy, academia, not-for-profit organisations and EFPIA member companies, bringing in key expertise in patient advocacy and processes for research and development in medicines. The project is coordinated by the European Patients’ Forum. More information can be found on http://www.pa tientsacademy.eu

About the Innovative Medicines Initiative (IMI)

The Innovative Medicines Initiative (IMI) is Europe's largest public-private initiative aiming to speed up the development of better and safer medicines for patients. IMI is a joint undertaking between the European Union and the pharmaceutical industry association EFPIA. IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe. The EUPATI project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies’ in kind contribution. More information can be found at www.imi.europa.eu

EUPATI - The European Patients' Academy on Therapeutic Innovation
Web www.patientsacademy.eu - Twitter @eupatients - LinkedIn page - Facebook Page - Google+ Page

Project Coordinator and Managing Entity:
European Patients' Forum a.s.b.l. (EPF)
31, Rue du Commerce, 1000 Brussels, Belgium
http://www.eu-patient.eu

Contact person:
Jan Geissler, EUPATI Director
jan@patientsacademy.eu
Tel. +49 (89) 66086968