5th March 2024, 3.30pm – 5.00pm GMT
Patient and Public Involvement and Engagement in child health tech development
Chair: Patrice L. (Tamar) Weiss, OT, PhD, ALYN Children’s Hospital, Jerusalem, (Israel)
EPTRI is delighted to welcome you to our fourth webinar on Patient and Public Involvement and Engagement in child health technology development. Our 90 minute webinar will focus on the impact of involving children, young people and their public in shaping child health technology. Learn from experts on the ethical and practical aspects of involving children and young people in health technology developments, including areas such as co-design and co-development. We will delve into the strategies and benefits from the engagement of children and young people and families in paediatric health research, in particular young stroke survivors and people with a disability of cerebral palsy. We look forward to seeing you at our next exciting webinar event
Jennifer Preston, senior Patient and Public Involvement and Engagement Manager, University of Liverpool (UK)
Jenny Preston is a senior Patient and Public Involvement and Engagement Manager based at the University of Liverpool. Her main role for the last 18 years has been to deliver a strategy for the involvement and engagement of children and young people and families in paediatric health research.
Jenny is currently the PPIE Executive Lead for the NIHR Children and Young People MedTech Co-operative (CYPMedTech). She is also strategic lead for PPIE in other initiatives including: the NIHR GenerationR Alliance (www.generationr.org.uk) (Young Person’s Advisory Groups across the UK, and internationally); NIHR Alder Hey Clinical Research Facility; conect4children (c4c) (a large collaborative paediatric network that facilitates the development of new drugs and other therapies for the entire paediatric population across Europe); co-founder of a European Young Person’s Advisory Group Network (eYPAGnet) (a network that empowers young people and families across Europe to contribute to paediatric health research), and Patient and Public Involvement Policy Manager for the University of Liverpool.
Begonya Nafria, Patient Engagement in Research Coordinator at Sant Joan de Déu Chidren’s Hospital (Spain)
Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (www.kidsbarcelona.org), Co-chair of Children’s Medicines Working Party of EFPGCP. Coordinator of the cross-cutting theme of patients involvement in Conect4Children project (pan-European paediatric clinical trials network).
The main aim of all the activities leaded or participated by Begonya is to achieve a better quality of life for the paediatric patients thanks to research and new therapies.
Francesca Fedeli, Founder of Fightthestroke.org
Patients and people with disabilities rights activist Francesca co-founded Fightthestroke Foundation together with Roberto D’Angelo, with the aim of developing inclusive solutions for young stroke survivors and people with Cerebral Palsy. Thanks to the use of technology, inclusive design and science, Fightthestroke has revolutionized family engagement in research and the Italian advocacy ecosystem with their solutions, winner of numerous awards for being able to combine the most advanced discoveries in Neuroscience with Artificial Intelligence and community based healthcare. Francesca is the author of the book “Lotta e Sorridi” published by Sperling & Kupfer in 2015 and translated into German by Bastei Lubbe in 2018, she is Ashoka, Eisenhower and Global Good Fund Fellow, TED speaker and TEDMED ambassador in Italy since 2014, board member of IAPS-IPSO.