We spoke to Begonya Nafria, Patient Advocacy Manager in Research at the SJD Barcelona Children's Hospital, as part of PCT TV at Partnerships in Clinical Trials Europe (Nov 2017) about her work on the European Young Person’s Advisory Group.
The European Young Person’s Advisory Group network, or eYPAGnet, launched in May 2017 with the ultimate aim of 'empowering young people and families across Europe to contribute to paediatric health research'. In this exclusive interview, Nafria delves into the objectives and importance of such patient networks. Here we pick out the key highlights, or you can watch the full interview below.
Why was the network set up and what is its main objectives?
'The principal aim of the network is to ensure the contribution of young patients in the development of pediatric clinical trials. This is a new approach in the development of these kinds of studies as children are not usually included in the design and development of clinical trials. The idea of these groups is to train young patients to ensure they have the right skills and knowledge to contribute to the project. Under the protection and with the help of patient organisations, or in our case a children's hospital, we collect their feedback on improvements on the different stages of clinical trials.'
Why do you think patient networks or advocacy groups are so important?
'They are a nice way to include the voice of the patients. These groups are well connected with clinical research centers and sites where clinical trials are performed, and they work very closely with researchers from these sites.
We're able to ask the children if the design of the protocol is right for them or not. We can ask how we can improve the protocol and then include their views and needs. These studies are of course designed by researchers and we need to include the voice of the patients.
The young patients can also contribute at other stages of clinical trials. For example, they help us to write and improve signed documents to ensure they are valid for children.
It's nice to ensure that along the process of pediatric clinical trials, we are working with the right tools, the right knowledge, and the right language to address children.'
Patient-centricity and clinical operations are key topics at T3: Trials, Tech and Transformation being held in Raleigh, North Carolina on May 30-31, 2018. Explore the agenda or book a pass from as low as $399.