EATRIS takes further steps towards normalising meaningful patient engagement in translational research

Published 8 April 2022

For translational medicine to succeed, the research and development ecosystem must strive towards more responsible research practices, ensuring the involvement of all relevant stakeholders. Most importantly, this includes the patients who ultimately benefit from research.  

EATRIS has built close partnerships with patient organisations, which notably led to the creation of a Patient Advisory Committee, and participation in various European collaborative projects such as the European Joint Programme on Rare Diseases (EJP RD) engaging more specifically with the RD patient community. Strong relationships with the European Patients’ Forum (EPF) and the European Patients’ Academy on Therapeutic Innovation (EUPATI) have been nurtured since 2019 and 2020 respectively through collaboration agreements.  

In the framework of a Horizon 2020 funded project (EATRIS-Plus), EATRIS, in collaboration with EPF, formed a multistakeholder taskforce in February 2022 to develop a toolkit on patient engagement in translational research. The taskforce includes members of the project Patient Advisory Committee, patients and patient organisations’ representatives, academic researchers, research managers, as well as university patient engagement officers.   

The aim of this toolkit, which is expected to be ready by the end of 2022, is to further incentivise researchers in academia to engage with patients in a meaningful manner and provide academics with more hands-on guidance and resources. The need for such guidance emerged from a series of workshops and webinars organised in 2021 as part of the EATRIS-Plus project, and a recent survey of academic researchers (still open), which highlighted the multiple barriers preventing academic researchers and patients from collaborating. The ambition of the taskforce is also to build on the existing knowledge and learning from initiatives such as PARADIGM and Patient Focused Medicine Development.

In this context and with the objective of collecting additional insights on this important topic, EATRIS and EPF will co-host a session at the Patient Engagement Open Forum on 14 April 2022 between 14:30-16:00 CEST to explore with patients, funders and researchers how to normalise patient engagement practices in research. If you would like to join the session, you can register here 

The taskforce will organise focus groups and regularly consult a wider circle of stakeholders as the toolkit develops. If you are interested in being part of those future consultations, get in touch with Anne-Charlotte Fauvel, EATRIS Head of European Affairs, at 

About EATRIS’ commitment to patient engagement 

EATRIS made patient engagement a key priority in its 2019-2022 Strategic Plan to support effective multi-stakeholder collaboration and a genuine patient-centred approach in translational research. Patient engagement is also a key objective of EATRIS-Plus, a four-year H2020 flagship initiative for personalised medicine coordinated by EATRIS, which will run until the end of 2023. EATRIS’ strategy to accelerate patient engagement in academic research has been co-developed in close partnership with several European partners, particularly EPF and EUPATI, and aims to: 

  1. Support patient education through the co-development of educational materials for patients. 
  2. Incentivise researchers to meaningfully engage with patients in their research through tools and guidelines. 
  3. Co-create research with patients through onboarding of patients and patients’ organisations representatives in collaborative research projects.