A Young Persons Advisory Group, or YPAG, is composed of youths actively participating as partners, advising researchers and their teams on a full range of activities in various research projects and initiatives. As shown in the United Kingdom, Europe, the United States, and Canada, their ability to provide fresh perspectives on a research study have resulted in much valued knowledge and changed attitudes about the involvement of young people. While working to learn more about clinical research, well-prepared youths can help researchers develop research questions, design trials, improve communication with the target population, and brainstorm methods for dissemination of findings. Many YPAGs also work on research projects on their own and participate in science conferences where they present their findings and explain the importance of their YPAG involvement in research.
iCAN (International Children’s Advisory Network) is a worldwide consortium of children’s advisory groups working together to provide a voice for children and families in health, medicine, research, and innovation through synergy, communication and collaboration.
Currently, iCAN consists of 19 chapters across the globe corresponding to the different YPAGs generally known as KIDS. iCAN’s chapters work both locally in partnerships with their local children’s hospitals and communities, and collaborate together network-wide to have a global impact. Through their chapters, youth-led councils, committees and focus groups, they address needs of pediatric clinical research and healthcare, influence state and federal regulations, and advocate for pediatric patients across the globe. Their goal is to educate the people about the importance of children’s involvement in the development of research trials, and to provide children and families with resources and opportunities to provide their feedback and input into studies and products intended for children.
iCAN is a free resource available to any organization, company, or group which seeks the input of children and families in their projects. They utilize online-based surveys, focus groups, forums, and more to engage all of the youth advisory groups in their network to provide specific feedback about studies, products, and devices intended for the treatment of children globally.
Their slogan is: Together, we can improve the future of pediatric medicine!
On November 3rd, 2017, the YPAG of Bari has been launched with the name of “KIDS Bari”. The group is a new member of iCAN (International Children’s Advisory Network).
KIDS Bari is promoted by Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) in collaboration with the TEDDY Network TEDDY (European Network of Excellence for Paediatric Clinical Research), Ospedale pediatrico “Giovanni XXIII” and the paediatric University Hospital Azienda Ospedaliero-Universitaria ConsorzialePoliclinico di Bari.
Policlinico of Bari and the paediatric hospital “Giovanni XXIII”, together with CVBF, are partners in many European research projects and involved in several paediatric clinical trials. The European experience in clinical research and the collaboration with CVBF will represent a benefit and a driving factor for the YPAG in the promotion and understanding of the clinical research by the YPAG.
The YPAG is composed by about 26 young people (new members can be added whenever they apply), age range 14-17 years, both including young patients and healthy youngers. The YPAG won’t be associated with a particular health condition or disease.
Members have a good knowledge of English, according to their age.
Members have been recruited through the hospitals and the patients’ associations, by means of schools, associations, friends of patients and their families and were selected according to their motivation and interest in improving health research.
The group will meet every 4-5 weeks and will follow a training course focused on learning about the research process. Education, in fact, will be an important aspect in the development of the YPAG. To address the objectives of the group, education will be thorough, relevant, and ongoing . The training team will have different professionals involved, such as principal investigators and research nurses, psychologists, pharmacologists, etc.
There will be an internal Steering Committee chaired by a leader and will be responsible for the planning and coordination of the activities as well as for the external communication. The YPAG will be regulated by a kids’ chart defining the frequency of the meetings (approximately every six weeks), the activities and a behavioral code.
Collaboration with the already existing YPAG will be enhanced since learning with peers will be of great value for the group and can allow young people to test their skills with partners and to interact without reverence. The peer education constitutes, indeed, an educational proposal in which some members of a group are trained to play a tutorial role. Peer education often helps to promoting relationship of mutual education, as recommended by modern development psychology.
- Peer support for young patients
- Advocacy for children, patients and participants in clinical trials (YPAG can help to inform children and young patients about the process to be involved in a clinical trial)
- Advise young people on research
- Raising public awareness
- Provide Young People with: Information on research; Participant, Patient documentation and materials such as apps; Clinical trial protocols.
- Supporting researchers e.g. in trial design and delivery and prioritizing future research
- Increase awareness on clinical research by working with the schools (European Science Week): approaching pediatric research to schools
- Increase awareness on clinical research through the different means of communication (approaching pediatric involvement in research to the society)
- Report on YPAGs activities in scientific events
CVBF and paediatric hospital “Giovanni XXIII” will support the YPAG in terms of organization and coordination, with particular reference to:
- Organizational secretariat;
- Organization of training courses;
- Development and management of a dedicated website and its social media channels;
- Organization of internal meetings and national/international events (including logistical supports).
The YPAG will be further supported, in the organization/implementation of its activities, by a team of pharmacologists, pediatricians, child psychologists, investigators, research nurses and communication experts.
The YPAG will be coordinated by a Steering Committee composed by a restricted group of young people who will be responsible for the planning and coordination of the activities as well as for the external communication.