About

The KIDS Barcelona group is led by Fundació Sant Joan de Déu that is the institution to carry on the research initiatives and clinical trials of Sant Joan de Déu Children’s Hospital in Barcelona (Spain). Our group is also part of the global project “Kids and Families Impacting Disease Through Science (KIDS)” within the International Children’s Advisory Network (Ican).

The team is formed by children and teenagers who act as a Scientific Council in our hospital. They are involved in the processes of comprehension, communication and improvement of  innovative medical methods that impact children and teenagers, ensuring, in this way, the voice of the children and their families within the medicine, research and innovation.

The group KIDS Barcelona was created in 2015. Nowadays, it consists of 17 teenagers, aged 12 to 17 years, who have been trained in the four main areas of the project:

  • Biomedicine

  • Research

  • Innovation

  • Clinical trials

 

The facilitators of the group are Joana Claverol (Clinical Trials Coordinator) and Begonya Nafria (Patient Engagement in Research Coordinator). Both are involved in the Coordination and Steering Committee of eYPAGnet as founder members.

The project KIDS Barcelona seeks to answer to the following needs and goals:

  • To teach and defend medicine, research and innovation that improves children’s health and treatment, by placing young people in the center of our field of work.

  • To promote a consulting process in the hospital, by including teenagers’ voice and opinion in all the research projects that impacts them.

  • To involve teenagers in the detection of unfulfilled pediatric needs.

  • To plan and perform, from the pediatric perspective, all the processes that take action in the development of a clinical trial (e.g. assent document).

 

KIDS groups are also entitled as Young Persons’ Advisory Groups (YPAG) and are acknowledged internationally by the regulators as well as by the pharmaceutical industry, recognized as a youth group trained and empowered by a research centre.