FAQ

This FAQ aims to bring answers to questions related to the European Patients’ Academy on Therapeutic Innovation. If you have any questions that has not been raised here, please feel free to share it with us and we will be happy to add it here ([email protected]).

What does EUPATI stand for?

EUPATI stands for the European Patients’ Academy on Therapeutic Innovation.

What is EUPATI?

The European Patients’ Academy on Therapeutic Innovation is a multi-stakeholder initiative, originally established by the IMI-EUPATI project (2012-2017), then hosted by the European Patients’ Forum (EPF) (2017-2020) and since 2020 established as an independent Foundation. It is a successful programme that provides education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development (R&D), and to improve the availability of medical information for the health interested public.

What is the Patient Expert Training Course?

The EUPATI Patient Expert Training Course is a unique opportunity for patient advocates to receive expert-level training in medicines research and development, specifically tailored for them. The training is a mixture of e-learning coursework and face-to-face training over 14-month period.  By early 2021, 4 cohorts of trainees, about 210 persons, will have graduated from the course.

What is the EUPATI Toolbox?

The EUPATI Toolbox was launched in January 2016. It contains a library of information about medicines research and development. This information is not medicine- or disease-specific.

More than 4 million users have accessed the information on the Toolbox since its launch. It provides the “A-Z of medicines research and development” from lab bench to approval, drug safety and other topics. Users can access the Toolbox information currently in 9 languages and four additional languages are in translation.

What are the EUPATI National Platforms?

The EUPATI National Platforms (ENPs) mirror the EUPATI public-private partnership model at the national/country level. ENP Membership is open to all, but its make-up can vary from country to country. In some countries, ENPs are set up as an informal group run by volunteers, other countries have established legal entities with formal statutes and paid staff in place.

ENPs’ work includes establishing national patient education programmes, establishing charters for patient involvement, members speaking internationally at conferences and promoting education by establishing workshops on patient engagement, mini-courses or webinars. National platforms are not disease specific and as a result they bring together individuals across all areas of patient involvement.

In which languages is the Toolbox available?

The Toolbox material which is currently available in 9 languages: Danish, German, English, Spanish, French, Italian, Dutch, Polish and Russian. 4 languages translation are in process: Portuguese, Romanian, Swedish and Japanese.

What is EFOEUPATI?

EFOEUPATI stands for Ensuring the Future of EUPATI. It was an IMI-EFOEUPATI project launched on 1 September 2018 that ran for 25 months, until end of September 2020.

Ensuring the Future Of EUPATI aimed to ensure optimal exploitation and sustainability of the core achievements of the IMI-EUPATI Project 2012-2017: Patient Expert Training Course, the multilingual public Toolbox, and the EUPATI National Platforms Network. It is imperative that these pillars exist in the medium- and long-term to address the growing field of patient engagement. The project was co-lead by the European Patients’ Forum (EPF) and Bayer.

Who is part of EUPATI?

EUPATI is an independent non-profit Foundation with approximately 30 partners,  comprising patient organisations, pharmaceutical organisations, academia and non-profit organisations. EUPATI’s network also includes Regulators and HTA bodies. See below on how to get involved in the European Patients’ Academy.

What is the difference between EUPATI and EPF?

The European Patients’ Forum (“EPF”) is an umbrella organisation of pan-European patient organisations active in the field of European public health and health advocacy. EPF currently represents 74 patients’ organisations, including both chronic disease specific patients’ organisations operating at the EU level and also national coalitions of patients’ organisations.

EUPATI focuses on training and patient education, and is not involved in policy work. EPF is a founding member of EUPATI, hosted EUPATI during the so-called bridging phase 2017-2020 and continues to play a key role in EUPATI’s governance and activities.

What is the difference between EUPATI and PFMD training?

Patient Focused Medicines Development (PFMD) aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. PFMD (Patient Focused Medicine Development) & EUPATI have a common objective: supporting all stakeholders in making patient engagement the new normal. PFMD and EUPATI have joined efforts in providing training and increasing awareness about patient engagement to all stakeholders. This collaboration enables breaking down existing silos, identifying and disseminating best practices across the board, avoiding redundancy and fragmentation, and building coherent and complementary capacity to deliver patient engagement. The goal is to collaborate in developing a capacity building portfolio available in different formats: online (self-paced, provided by PFMD) and in-person (classroom training, provided by EUPATI), long and short versions to meet the needs of the various stakeholder groups and audiences. Please read more here: https://eupati.eu/wp-content/uploads/2020/07/eupati-pfmd-collaboration-2-pager-finalversion.pdf

What is the difference between EUPATI and PARADIGM?

PARADIGM is a public-private partnership and is co-led by the European Patients’ Forum and EFPIA. PARADIGM’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players. The objective is to develop much needed processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue. Building on advances at international level, PARADIGM will integrate the needs, perspectives and expectations of all actors (including vulnerable populations) involved and will also produce a set of metrics to measure the impact of patient engagement.

EUPATI is collaborating with PARADIGM on sharing the developed tools for patient engagement via its Toolbox.

What are the main activities of EUPATI?

Current:

  • Patient Expert Training Course
  • Toolbox
  • EUPATI National Platforms
  • Training provided by EUPATI National Platforms
  • EUPATI Fundamentals (training about patient engagement for professionals)
  • EUPATI In-House Training (tailored training about patient engagement for academia and industry)
  • Continued training for EUPATI Alumni

Planned:

  • Patient Expert Training Course On-Demand, accessible online
  • EUPATI Essentials (follow-up to EUPATI Fundamentals)
  • EUPATI Matchmaking & Mentoring of EUPATI Fellows with EUPATI Partners

How can I get involved on EUPATI?

Contact us here: https://collaborate.eupati.eu/ or via email at [email protected]

How many EUPATI Fellows have graduated from the Patient Expert Training Course?

In September 2020, 154 EUPATI Fellows have graduated from the Patient Expert Training Course and about 60 trainees are currently enrolled in the programme.

Where does EUPATI provide education?

EUPATI Patient Expert Training Course consists of online modules and face-to-face events. The events are organised in different locations in Europe, most recently in Madrid, Spain. The EUPATI Fundamentals have been organised in Brussels, Belgium in 2019 and 2020. The tailored In-House Trainings take place at the locations of the participating groups.

As of April 2020, all EUPATI trainings are taking place online due to covid 19. Face-to-face events are planned to start again in 2021, depending on the situation of the epidemic.

How will the EIT Health Campus 2020 project (EUPATI Reload) change the EUPATI Patient Expert Training Course?

EUPATI RELOAD aims to adapt the current EUPATI Patient Expert Training Course to cater for each learner’s needs, making the course more accessible and sustainable.

A key step is to repackage the existing six modules into up to 30 shorter modules, which means they can be offered in a format similar to the popular Massive Open Online Courses (MOOCs). Another improvement will be to enhance the e-learning elements of the face-to-face programme by using experiential and problem-based learning.

The EUPATI Reload is an EIT Health project was launched on 1 January 2020 and will run for 12 months, until December 2020.

Which stakeholders can take a course/training delivered by EUPATI?

The EUPATI Patient Expert Training Course has been open for patients and patient representatives from all over Europe. They will remain the main target audience of the course in the future, but the transformation of the course onto online on-demand training units will allow also representatives of other stakeholders to access the learning materials and take online training modules.

The EUPATI Fundamentals and tailored In-House Training on patient engagement are addressed to professionals in academia and pharmaceutical industry.