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
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) |
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“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 |
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