How best to involve youths in the design of clinical research?
As stated on our “About us” page, to enhance the impact of child health research, there is an urgent need to embrace new conceptual and methodological advances in the design, conduct and reporting of child health research. This includes appropriate engagement of children and their families from study design to reporting to implementation of study results.
EnRICH developed a platform that summarizes information and guidance for researchers who are looking to involve youths in the design of clinical trials. This online platform aims to help research networks and/or institutions to develop their own Young Persons Advisory Groups (YPAGs) in a systematic manner based on research findings and experiences from existing YPAGs.
What is a YPAG?
A Young Persons Advisory Group, or YPAG, is an organization 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, 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 brain storm methods for dissemination of findings. Many YPAGs also work on research projects of their own and participate in science conferences where they present their findings and speak to the importance of their YPAG involvement in research.