The Value of Patient Co-Creation in Clinical Trial Design

Begonya Nafría, Patients Engagement in Research Coordinator, Sant Joan de Déu Children's Hospital Barcelona

Begonya Nafría is the Patients Engagement in Research Coordinator at Sant Joan de Déu Children’s Hospital (Spain). She has extensive experience in patient and family involvement research initiatives. She also has a personal story as a caregiver and patient advocate as the sister of a young adult with cerebral palsy.

Her areas of expertise are in paediatric patient involvement research, more specifically in the field of clinical trials and in health innovation. She is currently a PhD student in patient involvement in the paediatrics field, and pursuing a thesis project about the rights of children and young people participating in clinical trials.

Begonya’s experience and activities aim to achieve a better quality of life for the paediatric patients with the help of research and new therapies and ensuring their active involvement towards patient-centric clinical research and innovation.

Nora Navarro, Patient, Kids Barcelona

Nora Navarro is 19 years old and is pursuing a degree in criminology. A passionate advocate of science, Nora was a patient of Sant Joan de Déu Children’s Hospital since she was nine months old and since 2018 has been an active member of the Kids Barcelona Young Person’s Advisory Group.

Lucy Dixon, Chair, PCD Support UK

Lucy Dixon is the chair of PCD Support UK and is studying for her master’s in social research at the University of York.

Lucy has focused on addressing inequality in both education and health throughout her professional career with specialisms working with disadvantaged or marginalised groups, rare disease communities and voluntary sector organisations.

Lucy also mentors disadvantaged young people seeking to attend selective universities, including Oxford and Cambridge, as well as those applying to medicine (undergraduate).

Elisa Ferrer Mallol, Patient Advocacy Manager, Aparito

Dr. Elisa Ferrer Mallol is the Patient Advocacy Manager at Aparito.

Dr. Elisa Ferrer Mallol holds a pharmacy degree and a PhD in physiology. She has broad experience in different areas of the healthcare industry, such as drug safety, medical publishing and research project management. In the last few years, she has been working in the rare disease patient advocacy space, first at EURORDIS, the European umbrella of rare disease patient organisations and now at Aparito managing the Patient Group Accelerator, a programme to help co-design digital endpoints in partnership with patient groups.