Presentation

Presentation

The mission of the Unit for Patient Participation in Research is to ensure patients and families play an active role in the research and innovation initiatives led by our organization, as well as those in which it participates. Our goal is to design and carry out patient-centred projects that take into account their needs, while responding to the requirements of all the agents involved (researchers, regulators, etc.).

The origin of the Unit dates back to 2015 when KIDS Barcelona was set up, a scientific council of adolescents that meets monthly at Sant Joan de Déu Barcelona Children's Hospital and actively contributes to the institution's projects. Since then, we have carried out numerous activities and initiatives that have made our organization and its model of patient participation in research an international reference. Our work methodology considers the family as the central axis of any research initiative linked to diseases that affect the paediatric population

Goals

  • Respond to the requirements of research and innovation projects supported by the institution to ensure a design and development focussed on the needs of patients and their families.
  • Promote a research culture that takes into account patients and their families as key partners in research design and development.
  • Inform and train researchers and other agents in the design of research methodologies that ensure a participatory role for patients.
  • Analyse the economic and social impact of the involvement of patients and their families in the different research phases.
  • Provide a consultancy service to ensure that the involvement of patients and their families in research is incorporated into the field of action of the pharmaceutical industry, academic institutions, regulators and other agents.
  • Train patients' organisations for involvement in clinical trials, clinical research and innovation according to participatory models designed for patients and their families.

Àrea de Participació de Pacients en Investigació
Edifici Docent. Santa Rosa, 39-57
08950 Esplugues de Llobregat (Barcelona)

Contact:

Begonya Nafria Escala
Coordinator
bnafria@sjdhospitalbarcelona.org