Patient engagement

EATRIS’ commitment to patient engagement

Meaningful and early patient engagement is essential to responsible translational research. EATRIS brings together researchers, patients and other key stakeholders to embed patient perspectives throughout the research and innovation process, helping ensure that research is developed with—and for—the people it is intended to benefit. EATRIS’ strategy to accelerate patient engagement in academic research has been co-developed in close collaboration with several European partners, and encompasses the following four objectives:

  • Supporting Patient Education
  • Training Researchers on Meaningful Patient Engagement
  • Co-creating Research with Patients
  • Raising Awareness and Advocacy

EATRIS and the European Patients’ Academy on Therapeutic Innovation (EUPATI) signed a partnership agreement in Spring 2020, demonstrating both organisations’ commitment to provide education and training opportunities in translational research for patient advocates, and strengthen academic researchers’ capacities to effectively engage with patients in their research. EUPATI is a foundation providing education and training to increase the capacity and capability of patients and patient representatives to understand and meaningfully contribute to medicines research and development, and to improve the availability of medical information for patients and other stakeholders.

Through supporting patient education, we can ensure that patients are well-informed and are then able to fully participate in the co-creation process. To that end, EATRIS has become a Sustaining Partner of EUPATI and provides regular educational opportunities for EUPATI Fellows (patients who have completed the EUPATI Patient Expert Training Programme). EATRIS waives training fees to EUPATI Fellows, provides materials for the EUPATI Toolbox, participates as trainer at the EUPATI Flagship PEPT Programme, and supports webinar organisation through the EUPATI Academic Cluster. We are continually committed to offer lifelong learning opportunities to EUPATI Fellows in our training courses. All EATRIS webinars and an online courses are openly available on EATRIS e-learning platform, TransMed Academy.

EATRIS also contributes to patient education and capacity building through the REMEDi4ALL Digital Academy, an online learning platform dedicated to medicines repurposing. The Academy provides accessible learning opportunities for patients and patient representatives, researchers and other stakeholders across the drug repurposing pathway, with patient perspectives embedded throughout its content. A dedicated Working with Patients module provides practical guidance on patient training and meaningful engagement, supporting patients to contribute as informed partners while also helping researchers build the skills needed to work effectively with patient communities.

The European Patients Forum (EPF) and EATRIS have collaborated since 2019 to raise awareness, train and incentivise translational researchers to adopt responsible research principles and involve patients and patient organisations as co-creators in their research. EPF was an integral project partner in the EATRIS-Plus project (2020-2023) where they drove the patient engagement related activities. Researchers have the potential to facilitate meaningful patient engagement; however, researchers are often lack training on this topic. The patient’s voice and perspective have been incorporated into all EATRIS training opportunities, whether they are geared toward early-career or senior researchers. While earlier on EATRIS contributed to the development of a globally standardised patient engagement framework led Patient Focused Medicines Development (PFMD) and more specifically to a co-created “How-To Guide on Patient Engagement in Early Discovery and Preclinical Research”; then in 2023 EATRIS (together with the support of EPF and EATG) launched the fully integrated toolkit called Patient Engagement Resource Centre (PERC) that encompasses the aforementioned and many more resources targeted towards researchers education and awareness.

Our approach includes establishing Patient Advisory Committees within funded projects, creating structured opportunities for patients to contribute their knowledge and lived experience to research design, implementation and dissemination. Furthermore, we often encourage and enable patient organisations themselves to take a leading role in planning and delivering patient engagement activities in projects, ensuring that engagement responsive to the actual needs of the communities research aims to serve. Patient insights are equally valuable in interactions with regulators.

Through initiatives such as the Remedi4All drug repurposing platform, EATRIS also supports the involvement of patients in regulatory discussions related to clinical trial applications, helping to ensure that the patient perspective informs the development and evaluation of innovative therapies.

Under the auspices of the INFRADEV project EATRIS-Plus (2020 – 2023) EPF together with the European AIDS Treatment Group (EATG) ran the Patient Advisory Committee consisting of 6 members with various expertise, disease area experience and geographical distribution across Europe to ensure that the patient voice is always represented in discussions. Our thanks goes out to Karina Hubermann, Zoë Elliott, Saskya Angevare, Merete Schmiegelow, Michela Onali, Bojana Mirosavljevic, Oriana Sousa for active and inspirational partnership. 

EATRIS is a supporting Partner of EUPATI and an active participant in EUPATI Academic Cluster that brings together academic and research institutions within EUPATI and works to strengthen academic research capacities for patient engagement, share best practices, and align academic clinical research with patient involvement standards​. EATRIS is also a Member of the Patient Engagement Open Forum (PEOF) Programme Committee and actively involved in the development of the annual conference programme as well as virtual PEOF events.

Through the collaboration with PEOF, EATRIS is also a contributor to an journal article on exploring what research funders can do to incentivise patient engagement practices in research funding processes & decision-making. ​ EATRIS participates actively at European and International conferences in panels and roundtables, and encourages our member institutions to do the same to advocate for early and meaningful patient engagement and to showcase best practice examples from our community.

The Patient Engagement Resource Centre (PERC)

In 2023, EATRIS together with EPF and EATG launched the flagship resource – the Patient Engagement Resource Centre (PERC) at https://patient-engagement.eu.  PERC is an easy to navigate platform to help researchers get started with patient engagement. We selected and curated relevant public resources to help with understanding of the fundamentals of patient engagement, and guide the researcher through the different phases of patient engagement in the research cycle: from planning to conducting and evaluating. As of 2026 PERC has gathered over 8000 users across the globe and in April 2026 PERC was featured in a report by the European Parliament Think Tank (EPRS) that highlights the increasing importance of patient-centred approaches in health research and innovation across Europe. In 2025 PERC got a new section “Advanced Reading” that features deep dive articles on patient involvement, including in the development of the digital health solutions. We are always open for community contributions – don’t hesitate to be in touch!

Examples and Highlights

Hear From the Patients

Testimonials from EUPATI Fellows participants from EATRIS TMex course

“EATRIS TMex is truly disruptive and fills a much-needed gap: it joins researchers and patient experts together in the same learning room and teaches everyone about translational medicine (and about each other!). When we talk about patient-centric research, we often think about the need to educate the patients. Rarely do we think about the (equally important need) to train the researcher. EATRIS TMex surely doesn’t leave that amiss. Very importantly, the trainers and the organizers are incredible! They create a wonderful hands-on experience that will allow you to learn, network and enjoy yourself! Attending the course was an amazing experience. I couldn’t recommend it more!” Rita Francisco, EUPATI Fellow, Patient advocate, Congenital Disorders of Glycosylation & Allies -PPAIN (Professionals and Patient Associations International Network)
“As a patient advocate, I thoroughly enjoyed and found extremely interesting the TMex online course. (…) I strongly believe that patients and patient advocates will find the TMex course fascinating. This is because the course gives a helicopter view of how clinical trials and research projects are designed and carried out and it offers us the opportunity to have access to detailed information that can then be shared within our community.” Ana Amariutei, EUPATI Fellow, Patient advocate, Youth Cancer Europe

EATRIS-Plus Patient Advisory Committee Member Oriana Sousa at the EPF Patients’ Podcast

Check out this amazing chat with patient advocate Oriana de Sousa on the European Patients’​ Forum’s EU Patients’ Podcast. During the conversation, Oriana talks about the Patient Engagement Resource Centre (PERC), personalised medicine, and the importance of the patient perspective.

Patient voice on data – interview with our Patient Advisory Committee Member Zoë Elliott

During an interview, EATRIS-Plus Patient Advisory Committee member Zoë Elliott shared her views on the importance of patient data sharing in driving better research and personalised treatments. She highlighted that patients’ data is a precious resource that can ultimately improve quality of life for future generations.

Zoë also stressed that trust is essential: research organisations must be transparent about how patient data is used, protected and translated into meaningful patient benefit. Read the full interview here.

Interview with Patient Advocate Larissa de Lannoy from the EATRIS-Plus Summer School

Involving Patient Advocates in our training programmes is one way of doing so and therefore we invited Larissa Lannoy, a former Regulatory Affairs expert in Pharmaceutical Industry turned patient advocate, to attend the EATRIS-Plus Summer School in Personalised Medicine in 2023. We interviewed Larissa about her experience there and the motivation behind her attendance. She said that she believes that it’s very important for the patient advocates to have scientific knowledge to be able to collaborate more efficiently with researchers. Furthermore, she commented that attending the Summer School was a great opportunity to interact with young researchers and to highlight the importance of patient involvement at the stage of study design.   Read the full interview with Larissa here.