EUPATI Reload
EUPATI Reload was an EIT Health funded project (2020-2021) focusing on the re-packaging of the EUPATI Patient Expert Training Programme to make it available on-demand by patients, patient representatives and other stakeholders. For more information, please see here.
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. For more information, please see here.
More information on the project here
PARADIGM
PARADIGM was a public-private partnership project co-led by the European Patients’ Forum and EFPIA (2018-2020). PARADIGM’s mission was 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 was 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 sought to integrate the needs, perspectives and expectations of all actors (including vulnerable populations) involved and produce a set of metrics to measure the impact of patient engagement. Project website: https://imi-paradigm.eu/
EUPATI collaborated with PARADIGM on sharing the developed tools for patient engagement via its Toolbox and on organising the Patient Engagement Open Forum.
FACILITATE
EUPATI was involved (in 2022) in the ‘Framework for clinical trial participants data reutilisation for a fully transparent and ethical ecosystem project’ (FACILITATE). It explores whether the GDPR has limited Europe’s capabilities in innovative drug development and looks for ways to allow patients’ data to be accessed, used and reused.
Started in 2022, the project is conducted by a consortium of 27 partners from 17 Member States including patient associations, hospitals, universities, subject matter experts and members of the European Federation of Pharmaceutical Industries and Associations (EFPIA). The project is set to end in 2025.
As of 2023, EUPATI continues its involvement in the project through the Italian EUPATI National Platform. More information is available at the project website: https://facilitate-project.eu/
360° HTA Patient Involvement
From 2022 to 2023, EUPATI was part of the 360° HTA Patient Involvement project, together with EPF and HTAi.
The 360° HTA Patient Involvement project was funded by the European Federation of Pharmaceutical Industries and Associations aims to research the current methods and processes for patient involvement in HTA in Europe and analyse how they are perceived by the different stakeholders. Expected outcomes of this project included a 360° review of these methods and processes and a list of best practices.
EUPATI’s role in the project was contributing to the survey on the role of patient engagement in HTA and gather responses. For this, EUPATI was working closely with EUPATI Fellows contributing to and shaping the development of the project.
The project ended in December 2023, and the final report and recommendations are now available. Link to the final document: https://htai.org/wp-content/uploads/2023/10/360-HTAi-PCIG-Research-in-Patient-Involvement-Practices-in-HTA-in-Europe-Oct-2023-1.pdf
A lot of good practices exist, but there is lots of room for improvement. This report shows that we can learn from the great work already being done and embed this more widely. It also points to the need for flexibility in processes and for a constant cycle of learning. Covering European practices, this report comes at a timely moment when the implementation of the HTA Regulation in Europe is underway.
More information on the project here.