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The right of being involved in health research a worldwide right for children (Guest blog)

Children and young people’s participation in health, research and innovation is a fragmented practice across Europe. Minors have the same rights than adults. When they are enough mature they deserve, beyond the right to express their views, the opportunity to be heard and included in any activity that can matters them. This applies to health, research and innovation, and it’s recognized by the Convention of the Rights of the Children published on the 20th of November of 1989.

In the last decades, many industries have developed the right methodologies and processes to involve their customers in the design and delivery of its services or products.

Health sector time by time is moving to this new paradigm of cross-collaboration between the different stakeholders involved. Patients are essential to guarantee patient-centric design and they deserve to be involved with a meaningful role from the early stages of research when their contribution allows designing better projects for the patients that will participate in clinical trials.

When these activities refer to children and young people, to guarantee their active engagement for co-designing patient-centric initiatives, it’s essential to educate them in this role. They are naïve in clinical research and they deserve to be equipped with the right knowledge and skills to be involved in projects as equal partners than researchers and other stakeholders.

The YEAH (Youngsters Engagement Active in Health) capacity building programme has this role and has been co-created with members of the Young Advisory Groups from three paediatric hospitals: Sant Joan de Déu Children’s Hospital in Barcelona (Spain), Alder Hey Hospital in Liverpool (UK) and Children's University Clinical Hospital (Latvia).

The training includes two levels, the first one focused in the involvement of children and young people in the design and execution of clinical trials. The level 2 has the goal to educate young people in the field of patient engagement in the development of medical devices addressed to the paediatric population. In both levels of training, contents related to the rights of the children and ethics are crosscutting topics in any activity, including the case studies that approach the real work to the training process.

The Digital Toolkit includes all the educational activities co-designed with young people.It is addressed to train members of YPAGs, High School students and young citizens and is accessible in English and in Spanish.

This project has received funding from the EIT Health and includes two pharma companies in the consortium (Bayer and Sanofi) to provide the scientific background of paediatric clinical research and to define the needs and expectations from the industry in terms of patient involvement in clinical trials.

Finally, it’s important to highlight that innovative methodologies are essential to educate young people in clinical design. In this sense, the YEAH level 2 includes a game to introduce the topic of health data rights to young people. The project will allow to concretise the principle about “nothing about us, without us” that summaries the value of involving patients in clinical research.

Begonya Nafria

Begonya Nafria is Patient Engagement in Research Coordinator at Sant Joan de Déu Children’s Hospital (Spain). She...
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