Begonya Nafria Escalera
She is Patient Engagement in Research Coordinator at Sant Joan de Déu Chidren’s Hospital (Spain). She has long experience in the field of the involvement of patients and families in research initiatives. She has also a personal story as a caregiver and patient advocate because is the sister of a young adult with cerebral palsy.
Her areas of expertise are focused in pediatric patients’ involvement in research and specifically in the field of clinical trials and in health innovation. She is currently a PhD student in patient involvement in the pediatrics field, specifically in a thesis project about the rights of children and young people participating in clinical trials.
Another relevant background of her profile is: Fellow of EUPATI (first cohort) and member of its Steering Committee, Coordinator and Founder Member of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), Co-chair of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), member of the Patients and Families working group and Chair of the Cross-Border Access to Pediatric Clinical Trials of EnprEMA (European Network of Paediatric Research of EMA).
Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European pediatric clinical trials network).
The main aim of all the activities led or participated by Begonya is to achieve a better quality of life for the pediatric patients thanks to research and new therapies, and ensuring their active involvement to perform patient-centric clinical research and innovation.