EUPATI emerged from the acknowledgement that patients across the EU want and need more information on therapeutic innovation but are largely unaware of undertaking research and defining their role. On the other hand patient advocates play a key role in providing information, but may lack education and training to participate in research and drug development processes. This innovative patient-led academy aims at developing educational material, training courses and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development.
IPPOSI's CEO Eibhlin Mulroe is currently Taskforce Leader for Work Package Two (WP2) which will build a strong EU-wide network of stakeholders to enable optimal knowledge-sharing and expertise on all six topics of interest. The network will consist of members of patient organisations from a broad range of diseases in all European countries, investigators, academic and industry health researchers, health professionals, competent authorities, ethics committees, Regulatory and HTA authorities, journalists, patients and carers, etc. WP2 will organise Annual Conferences and Regional Workshops and will initiate and support the establishment of National EUPATI Platforms. WP2 will also coordinate the EUPATI Ethics Panel. IPPOSI will continue to keep members informed of our work in this area. To know more about the project, please visit EUPATI website.
EUPATI September 2012 Meeting in Frankfurt
As a co-chair of Task Force 2.3 in Work Package 2 Eibhlin Mulroe was involved in organising and chairing a workshop at a major meeting which took place in Frankfurt on 5th September 2012. The meeting was used as the first step in developing a network of patients, science and industry across Europe who support and seek to partake in the European Academy for Therapeutic Innovation (EUPATI). In the first year IPPOSI and co-leads Novo Nordisk will be responsible for managing the NLTs among the 12 countries. Ireland is one of those 12 and we are happy to report that we had a strong attendance from Ireland at the Frankfurt meeting including our Director, Godfrey Fletcher, Peter Kelly, Irish Chronic Pain Association and Natalie Buhl, Jannsen Cilag. Interestingly, the TF2.3 co-chair, Christine Mullen Jensen is also Irish and based in Dublin and Work Package 5 is co-lead by Hibernia, an Irish company who will manage the IT requirements of the project. More than 100 registered participants from 24 countries attended the first public workshop of EUPATI in Frankfurt, demonstrating the broad interest and real need for more patient involvement when new treatments are being developed. Being an involved, informed, independent and active patient requires substantial knowledge, understanding and ability to question. This is especially true when patients are involved in clinical trials. The European Patients' Academy is taking the challenge of bringing all relevant stakeholders together to make a joint vision happen: to provide top-quality, objective, reliable, unbiased education, training and information to patient organisations and patients at large on all aspects of medicines research and development, in order to get involved and become empowered players in the medicines development process. This creates a paradigm shift, making sure that patients' needs and insights are at the centre in all relevant areas of medicines R&D. To read more about the Frankfurt meeting click here
EUPATI and Ireland Meeting December 2012
At the Frankfurt meeting delegates from Ireland were in attendance and volunteered to get involved in the next steps for the project. Mr Peter Kelly from the Irish Chronic Pain Association agreed to Chair the National Liaison Team in Ireland which plans to drive the formation of a EUPATI National Platform. IPPOSI will support this effort in consultation with Mr. Kelly and his colleagues on the NLT.
On December 6th Dr. Ingrid Klingmann, EFGCG, EUPATI Consortium Partner and Co-Chair of WorkPackage 2 travelled to Dublin to brief interested stakeholders on getting involved in EUPATI. The meeting was an opportunity to discuss how Ireland could assist the project by setting up a EUPATI National Platform . It is intended that the National Liaison Teams – including at least one representative each from patient organisations, academia and industry – will kick-start activity at the national level, leading to the foundation of EUPATI National Platforms, which will, among other things, roll out the Patient Academy’s training and adapt it to national needs.
Call for Educational and Training Resources
The EUPATI partners are asking for your help to provide existing educational and training resources on pharmaceutical innovation. They are interested in reviewing resources in a variety of formats, from webpages and e-learning modules to PowerPoints, pdf files and Word documents. If you can help please click here.
EUPATI Rome Conference 'a vision for 2020'
For anyone who has followed the progress of EUPATI from its early beginnings, the project’s first full conference was a revelation. The Rome conference in April 2013, held just 14 months after the launch of EUPATI, presented how far the project has developed.
More than 180 delegates from 28 countries were there to hear about the plans under way for three clear areas of training, Education and information in medicines development: a certificate level course that by 2017 will produce 100 patient experts from across Europe; online education material for 10,000 patient representatives; and an Internet library with information for anyone with an interest in medicines R&D – hundreds of thousands of people, perhaps millions. Whether you were in Rome or not, you will enjoy reading the report of the conference as it will convey the concept as well as the energy and enthusiasm of the delegates.
Read the in-depth report of the conference to get more interesting insights on the presentations, discussions and feedback of the participants. Or read our one page summary.
The full report of the conference, the photo gallery as well as the presentations are now available on: EUPATI Rome Conference
View selected presentations (video streams or PDF)
Video streams of session 1 (Patient involvement in medicines R&D Process in 2020)
Video streams of session 2 (Building Knowledge & Competences for Patients’ Involvement in Medicines R&D)
Video streams of session 3 (Public awareness about new medicines development in 2020)
View the photo gallery
Some impressions of EUPATI first conference in Rome