Patient engagement

EATRIS commitment to patient engagement

EATRIS made patient involvement a key priority of 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 collaboration with several European partners, and encompasses the three following objectives:

  • Support patient education
  • Train researchers on meaningful patient engagement
  • Co-create research with patients

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.

Every year since 2020, EATRIS waives registration fees to allow EUPATI Fellows to participate in its yearly course, Translational Medicine Explained (TMex), a course designed for young scientists who want to learn more about Translational Research and medicines’ development. EATRIS is committed to offer continued lifelong learning opportunities to EUPATI Fellows in its future training courses. Webinars and an online course are openly available on EATRIS e-learning platform, TransMed Academy.

Testimonials from EUPATI Fellows who participated in EATRIS training course, TMex:

“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 

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-partners in their research. EPF is also a project partner in the EATRIS-Plus project and is responsible for driving 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. Recent illustrations of this commitment include the Patient Engagement workshop co-designed with patients’ representatives, which was delivered during the EATRIS-Plus Summer School in Personalised Medicine held in June 2021, or the e-learning unit on “Patient organisations in Rare Diseases” included in EATRIS’ latest e-learning course on Advanced Therapies (ADVANCE). Future workshops targeting EATRIS national nodes and member institutions are planned for 2021 and 2022.

In addition, 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”. The guide offers good practices to support any researcher’s patient engagement journey. (Download the guide here).

EPF together with the European AIDS Treatment Group (EATG) are running one of the most important stakeholder groups in the EATRIS-Plus project  the Patient Advisory Committee (PAC). The PAC consists of 7 members with various expertise, disease area experience and geographical distribution across Europe, and was established to ensure that the patient voice is always represented in discussions. The PAC has an important role in shaping the work of a project –they ensure that patients are at the centre of the project’s missionThe PAC will remain in place until 2023, and EATRIS plans to sustain the committee beyond the lifetime of the EATRIS-Plus project to support the patient-centeredness of EATRIS future activities.

EATRIS has been working closely with EUPATI to maintain the EUPATI Toolbox, an online library on the A-Z of medicines research and development and patient engagement, up to date with the latest research and innovation developments, particularly in the areas of translational and personalised medicine. The Toolbox was launched in 2016 and currently, more than 4 million users have accessed the information, available in 13 different languages.

Meet our Patient Advisory Committee (PAC)

The Patient Advisory Committee (PAC) is a group of patients and patient representatives that consult and advise EATRIS and EATRIS-Plus project from the patient perspective. The PAC, engaged since the start of the project, serves to provide a diverse patient perspective and identify mechanisms for meaningful patient involvement and input throughout the project and beyond. The PAC contributes to driving patient empowerment at the heart of EATRIS operations, and contributes to the development of a patient involvement toolkit for translational researchers. The final objective of the PAC is to provide the patient voice and ensure that patients are at the center of the project’s mission.

PAC members

The PAC is comprised of seven individuals with varied experience in communications, advocacy, training, or experience with healthcare providers, in the general field of health, and represent a diverse range of disease areas, age groups, genders, and geographical origins in Europe.

PAC Members’ Expertise Areas

  • Advocacy: Merete Schmiegelow, Bojana Mirosavljevic, Oriana Sousa, Michela Onali
  • Communications: Oriana Sousa, Zoë Elliott, Saskya Angevare
  • Education: Roberto Giordano, Merete Schmiegelow,Michela Onali, Bojana Mirosavljevic, Oriana Sousa, Saskya Angevare
  • Scientific advice: Michela Onali, Bojana Mirosavljevic

The PAC is coordinated by the European AIDS Treatment Group (EATG), under the scope of the Patient Engagement activities, led by the European Patients Forum (EPF).

For further information, contact Karina Huberman at karina.huberman(at) eatg.org

Testimonials from EUPATI Fellows who participated in the EATRIS TMex training 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