The Patient Engagement Resource Centre (PERC) is a joint initiative from the European Research Infrastructure for Translational Medicine (EATRIS), the European Patients’ Forum (EPF) and the European Aids Treatment Group (EATG), funded by the Horizon 2020 funded project, EATRIS-Plus.
The PERC was developed to help academic researchers get started with meaningfully engage patients in their research. The PERC is a repository of publicly available guidance, training and practical tools that support researchers with every stage of their patient engagement activity: planning, conducting and evaluating. The “Fundamentals” section offers a curated list of materials, which the PERC deems essential to understand the basics of good patient engagement practices.
PERC also features “Stories” from researchers, patients and carers, highlighting in short videos how they have collaborated and their recommendations to others who would like to start engaging with patients.
PERC Development Team
EATRIS: Anne-Charlotte Fauvel (Head of European Affairs), Eliis Keidong (Member Engagement Officer), Rosan Vegter (Senior Rare Diseases Community Manager), Jake Fairnie (Head of Communications), Piret Baur (Communications Manager)
EPF: Valentina Strammiello (Director of Programmes), Estefania Cordero (Communications & Outreach Officer), Hannes Jarke (Project Manager)
EATG: Karina Huberman (Community Engagement Senior Advisor)
Acknowledgements
PERC was a result of many stakeholder consultations to ensure that the platform is fit for purpose.
PERC would have not been possible without the guidance and support of committed collaborators, notably through the EATRIS-Plus Patient Engagement Taskforce, the EATRIS-Plus Patient Advisory Committee, the Patient Engagement Open Forum event series as well as the patients, carers, researchers and funders who kindly joined our focus group meetings.
EATRIS, EPF and EATG would like to specially say THANK YOU to: Rocco Pignata (EATG), Sébastien Walchli (Oslo University Hospital), Sandrine Lavallé (Luxembourg Institute of Health), Salma Malik (ECRIN), Emma Dorris (University College Dublin), Olga Valcina (Latvian Oncology Patient Organization Alliance “OncoAlliance”), Sarah Weschke (Berlin Institute of Health at Charité – Universitätsmedizin Berlin, QUEST Center for Responsible Research), Amanda McCann (University College Dublin), Macarena Herranz Itúrbide (Vall D’Hebron Research Institute), Núria Gavaldà (Banc de Sang i Teixits), Ana Luisa Correia (Champalimaud Foundation), Sara Zullino (EATRIS), Monika Frenzel (French National Research Agency), Santa Rasa-Dzelzkaleja (Rīga Stradiņš University), Torsten Rackoll (Berlin Institute of Health at Charité – Universitätsmedizin Berlin, QUEST Center for Responsible Research), Ruxandra Soare (Luxembourg Centre for Systems Biomedicine, University of Luxembourg), Juliet Roudini (Berlin Institute of Health at Charité – Universitätsmedizin Berlin, QUEST Center for Responsible Research), Laetitia Aerts (King Baudouin Foudation), Isabelle Nguyen (King Baudouin Foundation), Vera Nies (Lygature), Tieneke Schaaij-Visser (Lygature), Patsy Petrie (FH Europe Ambassador), Alessandra Veronese (EUPATI Patient Fellow), Sara Pérez Martínez (Complutense University of Madrid), Jenny Camaradou (EUPATI Patient Fellow, (UK/GR) Knowledge Exchange & Grants Consultant), and EATRIS-Plus Project Patient Advisory Committee members: Saskya Angevare, Bojana Mirosavljevic, Michela Onali, Oriana Sousa, Zoë Elliott.