Patients Engagement in Research
Research Program
Where we are
SJD Barcelona Children's Hospital
Related websites
The focal point of our group is the study of the impact of active participation of paediatric patients and their families in the organisation's research projects (clinical trials and innovation initiatives).
Our experience in this area dates back to 2015, when our organisation created the Adolescents Scientific Council. With the Kids Barcelona group, we can involve patients in our own projects or in other projects in which we participate. This generates scientific evidence on the benefits of the active inclusion of patients throughout the life span of such projects.
Our group coordinates eYPAGnet, the European network of Young People's Advisory Groups (YPAGs) and is recognised by EnprEMA (European Networks of Paediatric Research of the European Medicines Agency). We are also members of two global initiatives: ICAN (International Children's Advisory Network) and PFMD (Patient Focus Medicine Development).
Research lines
- Educational materials and other resources for patient empowerment in the field of research.
- Return on Investment (ROI) and Equity (ROE) analysis of the participation of paediatric patients in the conduct of clinical trials.
- Design of paediatric patient participation and collaboration processes in a pan-European clinical trial infrastructure.
- Development of collective intelligence methodologies for the generation of emerging scientific knowledge among patients and families.
Scientific objectives
- To develop guidelines with recommendations for clinicians on the process of designing and developing activities to encourage patient involvement in research projects.
- To develop a Welcome Kit for patients in the Clinical Trials Unit. To measure the impact of the information and educational resources provided on patients' participation in each of the studies.
- To validate the use of new technologies in the process of patient participation in clinical trials. For example, the introduction of electronic informed consent.
- To design an international consensus guide validated by all agents involved in the process for the participation of paediatric patients in research (white paper).
- To analyse the impact of a collaborative methodology through the collective intelligence of patients and families to improve clinical knowledge of rare pathologies, through an on-line platform for social innovation.
Area/Field of expertise
The different research initiatives coordinated by the Patient Engagement in Research group, or in which it participates, focus on the participation of patients and their families in research projects. For the most part, these initiatives involve clinical trials and foster the conduct of studies that focus on patients' needs.
The field on the participation of paediatric patients in clinical trials is relatively new and innovative, with very limited experience available. Scientific evidence is therefore necessary to be able to standardise methodologies and metrics across Europe.
Coordination of the eYPAGnet gives us the opportunity to make our mark in Europe and consolidate a framework for action governed by common ethical principles.
Group members
-
Jefe de Grupo
-
Jefe de Grupo
-
Investigador
-
Investigador
-
Técnico
-
Maria Luz Andres Prada
Gestión
Last Publications
- Alessandrini E, Brako F, Scarpa M, Lupo M, Bonifazi D, Pignataro V, Cavallo M, Cullufe O, Enache C, Nafria-Escalera B, Claverol J, De Taeye L, Vermeulen E, Preston J and Tuleu C Children's Preferences for Oral Dosage Forms and Their Involvement in Formulation Research via EPTRI (European Paediatric Translational Research Infrastructure). Pharmaceutics . 13(5): 730.
- Faulkner SD, Sayuri Ii S, Pakarinen C, Somers F, Jose Vicente Edo M, Prieto Remon L, Diaz Ponce A, Gove D, Ferrer E, Nafria-Escalera B, Bertelsen N, Boudes M, Brooke N, Moutet A and Fahy N Understanding multi-stakeholder needs, preferences and expectations to define effective practices and processes of patient engagement in medicine development: A mixed-methods study. HEALTH EXPECTATIONS . 24(2): 601-616.
- Radu R, Hernández-Ortega S, Borrega O, Palmeri A, Athanasiou D, Brooke N, Chapí I, Le Corvec A, Guglieri M, Perera A, Jon Garrido Aguirre, Ryll B and Nafria-Escalera B Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study. jmir formative research . 5(3): e22695.
Projects
- Project name:
- Plataforma ISCIII de apoyo a la I+D+I en Biomedicina y Ciencias de la Salud. Soporte para la investigación clínica independiente.
- Leader
- Joana Claverol Torres
- Funding entities:
- Instituto de Salud Carlos III (ISCIII)
- Code
- PT20/00173
- Starting - finishing date:
- 2021 - 2023
- Project name:
- YEAH_Youngsters EngAgement in Health science_2021
- Leader
- Begoña Nafria Escalera
- Funding entities:
- EIT Health e.V
- Code
- 210661
- Starting - finishing date:
- 2021 - 2021
- Project name:
- EJP RD: European Joint Programme on Rare Diseases
- Leader
- Joana Claverol Torres
- Funding entities:
- European Commission
- Code
- 825575
- Starting - finishing date:
- 2019 - 2023