Adolescents are less likely to contribute to patient-centered outcomes research (PCOR) than adults. This is partially because there are very few resources that teach youth and researchers how to do PCOR together. We are creating a program called Family and Youth Research Education (FYREworks). FYREworks is a set of interactive, web-based trainings and toolkits that will help youth and researchers create research partnerships and do PCOR together. We will create FYREworks in three stages. First, a group of youth, parents, researchers, and educators will identify what patients and researchers need to know and be able to do to work together. Second, the group will develop the FYREworks program. The team will get feedback from youth and researchers that will help them improve FYREworks and make sure it works for different types of people. Third, a few research teams will try FYREworks and provide feedback that will make the program even better. Key collaborators on this project include a team of researchers, parents of children with chronic health conditions, youth with chronic health conditions, and educators with expertise in curriculum development. The Youth Advisory Board at the Children’s Hospital of Philadelphia will also contribute to this project. Other contributors include the Institute for Patient- and Family-Centered Care and research teams affiliated with the National Pediatric Learning Health System (PEDSnet). The primary output of this project is the FYREworks program, which will be made freely available to anyone who wants to use it.
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^The original title of this project was "YouthBuild: Trainings and Resources for Research Partnerships Involving Adolescents," and was affiliated with Children's Hospital of Philadelphia when it was funded.