Projects

The importance of patient engagement in Health Technology Assessment (HTA) is today widely recognised, and patients and patient organisations will play a vital role in the implementation of the new EU framework for HTA Regulation (EU 2021/2282).

To facilitate this, patients will require access to training, education and information on HTA and the ways in which they can be involved. Over the past 10 years, The European Patients’ Academy on Therapeutic Innovation (EUPATI) has become a key multistakeholder actor for patient engagement in Europe, with an extensive track record in patient education in medicines research and development (R&D).

EUPATI has trained over 200 patient experts (EUPATI Fellows), 450 online learners via EUPATI Open Classroom and 500 professionals (through EUPATI Fundamentals). EUPATI has become the ‘go to’ portal for independent, user-friendly information on medicines R&D (6 million users of the Toolbox in 14 languages), along with becoming the main point of contact at national level through its network of 24 National Platforms across Europe.

In this project EUPATI will:

1. Update EUPATI’s existing patient training content on HTA aligning with the new Regulation
2. Design an e-learning training course for patients on HTA and the specific requirements for the new Regulation
3. Develop interactive online training sessions (in 5 languages) preparing participants to take part in joint clinical assessments and joint scientific consultations with national HTA bodies
4. Develop and implement sustainability measures to ensure the continuity of the project outputs into the future.

The new HTA Regulation represents a unique opportunity to enhance the role of patients and patient representatives in HTA processes. In this respect, this project is in full alignment with EUPATI’s mission to further patient engagement in medicines R&D through education.

Since the beginning of 2022, EUPATI has been a part of the 360° HTA Patient Involvement project, together with patients’ organisations, industry partners and small-medium sized companies.

The 360° HTA Patient Involvement project is 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 include a 360° review of these methods and processes and a list of best practices. This research might be further expanded to other regions.

EUPATI’s role in the project is contributing to the survey on the role of patient engagement in HTA and gather responses. For this, EUPATI will work closely with EUPATI Fellows who will be contributing to and shaping the development of the project.

What is HTA?

According to the European Commission, Health Technology Assessment (HTA) “summarises information about medical, economic, social and ethical issues related to the use of a health technology. Examples of health technologies include medicinal products, medical equipment for diagnostic and treatment, prevention methods”.

More information on the project here.

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 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 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.

EUPATI has been involved as a non-profit organisation in the FACILITATE project to give patients access to their data to help them to become more active, responsible and aware drivers of their wellness, rather than passive receivers of care. Stared 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.

The FACILITATE project stands for the “Framework for clinical trial participants data reutilisation for a fully transparent and ethical ecosystem”. It will explore whether the GDPR has limited Europe’s capabilities in innovative drug development and will look for ways to allow patients’ data to be accessed, used and reused.

In this project, EUPATI will closely collaborate with the EUPATI National Platform from Italy.