EATRIS (the European Infrastructure for Translational Medicine) and EPF (European Patients’ Forum), together with affiliated partner EATG (European Aids Treatment Group), are pleased to announce the launch of the Patient Engagement Resource Centre, a platform designed to help researchers better engage patients in their research.
The Patient Engagement Resource Centre (or ‘PERC’) is an easy-to-navigate platform that features publicly available guidance, training and practical tools to help researchers get started with patient engagement, particularly in the early stages of biomedical research.
This initiative aims to make patient engagement in academic research the ‘new normal’, promote responsible research practices, and enable researchers to engage with patients in a meaningful way.
Anne-Charlotte Fauvel, Head of European Affairs at EATRIS, said: ‘We are delighted to launch the Patient Engagement Resource Centre, which has been designed for academic researchers who want to engage with patients but may not know how and where to start.’
The PERC was developed as part of the Horizon 2020 project, EATRIS-Plus, relying on a multistakeholder taskforce, public consultations, and by holding several focus group meetings including with research funders, to better understand the barriers that researchers face in meaningfully engaging with patients in their research.
Santa Rasa-Dzelzkalēja, a focus group participant and researcher at the Institute of Microbiology and Virology (Rīga Stradiņš University, Latvia), said of the PERC: “As a researcher, I find this online platform absolutely wonderful, as it contains so many resources. I can’t wait to introduce this to our research community as I think it will really make a difference.”
The platform has a dedicated Fundamentals section that provides researchers with a curated list of resources which are essential to understanding the basics of good patient engagement practices. Additionally, the PERC features Stories from researchers, patients and caregivers in short videos, sharing their experiences and recommendations for others looking to engage with patients.
Valentina Strammiello, Director of Programmes at EPF, said: ‘The Patient Engagement Resource Centre marks the first effort launched on a European scale to systematically include patients in research efforts, and does so in a way that meaningfully engages them and recognises their role as experts of their lived experience.’
Karina Huberman, Community Engagement Senior Advisor at EATG, said: ‘We are glad for the contribution of the Patient Advisory Group, who provided the patient perspective in a holistic way along the process, ensuring the PERC reflects their needs. Meaningful community engagement is crucial for the success of such efforts.’
The Patient Engagement Resource Centre is publicly available from 28 March 2023 at patient-engagement.eu
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About EATRIS-Plus: EATRIS-Plus is a project funded under the European Union’s Horizon 2020 research and innovation programme. It will support the long-term sustainability of EATRIS by delivering innovative scientific tools to the research community, strengthening the EATRIS financial model, and reinforcing EATRIS’ leadership in the European Research Area, particularly in the field of Personalised Medicine research and development.
About EATRIS: EATRIS is the European Infrastructure for Translational Medicine. It is a non-profit organisation that brings together academic resources and services for researchers to translate scientific discoveries into benefits for patients. Users are given access to a vast array of expertise and facilities from over 145 top-tier academic centres across Europe. EATRIS focuses on improving and optimising preclinical and early clinical development of drugs, vaccines and diagnostics, and overcoming barriers to health innovation. www.eatris.eu
About EPF: The European Patients’ Forum (EPF) is an independent non-profit, non-governmental umbrella organisation of patient organisations across Europe and across disease-areas. Our 78 members include disease-specific patient groups active at EU level and national coalitions of patients. Our vision is a Europe where patient organisations are valued partners in creating equitable, person-centered, accessible, and sustainable healthcare systems, based on patients’ unique expertise. www.eu-patient.eu
About EATG: The European AIDS Treatment Group (EATG) is a patient-led NGO that advocates for the rights and interests of people living with or affected by HIV/ AIDS and related co-infections within the WHO Europe region. Founded in 1992, the EATG is a network of more than 150 members from 45 countries in Europe. Our members are people living with HIV and representatives of different communities affected by HIV/AIDS and co-infections. EATG represents the diversity of more than 2.3 million people living with HIV in Europe as well as those affected by HIV/AIDS and co-infections. www.eatg.org