March 2017 – EUPATI Moves Forward Under EPF Direction

The five-year EUPATI project funded under the Innovative Medicines Initiative (IMI) ended in January 2017, and a “new” EUPATI programme started to move forward under the direction of EPF and a newly-formed EUPATI Management Team. Let’s have a look at the achievements so far and a glance at 2018!

The new team took on the overall programme coordination, including the supervision of the editorial and contents team members, the National Platforms’ network, and the response to requests from external stakeholders. The new team is also contributing to communications and outreach activities, making sure this flagship programme gets the visibility it deserves!

EUPATI now global

EUPATI continued its steady and sensible growth with a new partnership with patient organisations and academia in Brazil, rolling out the expert training course in the South American giant. Talks with rare diseases patient organisations and a university in Brazil led to the signing of a Memorandum of Understanding, setting the basis for spreading the EUPATI expert training course in Brazil, and the implementation of the course in Brazilian Portuguese within the following 12 months.

More patient involvement

Patient involvement in the whole life-cycle of medicines is a key matter in patient empowerment, but can also bear some challenges and threats. Various EUPATI contributors wrote an article on the topic and proposed some new ideas on how to make it clear and rigorous.  In the article, the EUPATI contributors Jan Geissler, Bettina Ryll, Susanna Leto di Priolo and Mary Uhlenhopp detail the rationale and benefits for all parties of involving patients and patient organisations at all stages of medicines’ development. The article also lays out patient input as becoming increasingly important in pharmacovigilance, i.e. in monitoring the safety and reliability of medicines once on the market.

Strengthening its network through events

In June, two full productive days in Berlin ushered in major advancements in the development of EUPATI’s network. The Annual General Meeting of national platforms and the “Train the Trainers” capacity-building event for EUPATI alumni and future trainers looked at the internal and external development and expansion of the project. Participants debated how the platforms can and should increase their work together across Europe, and agreed that cooperation is most purposeful when it comes to educational and informational projects that empower patient communities to work together on the basis of objective and scientifically sound information.

What’s next?

2018 will see EUPATI’s first full year as a post-IMI programme. The 60 trainees working hard on the Patient Expert Training Course will be working their way through modules on clinical development, regulation, and HTA online before meeting each other and EUPATI’s diverse faculty for some intense days in February and September in Madrid where they begin to put all the theory into practice. Whilst our trainees work, and we maintain and update the publicly accessible toolbox, our early year focus will be on working with our existing Alumni of the course, the EUPATI Fellows. As we move into summer we will see the EUPATI National Platforms meeting for their second face-to-face meeting, strengthening the regional collaboration that was established in 2017. As we reach the half way point in our 3-year bridging phase the Futures Team will be slaving away throughout the year to deliver the much-anticipated proposal for the future of EUPATI for the coming years, so that piloting can begin in 2019.

Contact person: Matthew May.