Teens and Families Trained to Engage with Researchers in PCORI-Funded Project

Youth are not often engaged as partners in traditional research, and even in the kind of patient-centered outcomes research to which PCORI is committed, youth are less likely than adults to contribute.

To try and address this, PCORI funded an engagement project that has reached the final phase of its work with the launch of an interactive, online training for youth, caregivers, and researchers interested in patient-centered outcomes research.

Family Youth Researcher Education, or FYREworks, funded through a Eugene Washington PCORI Engagement Award, is a set of interactive, online trainings and tools developed to prepare youth, caregivers, and researchers to conduct partnership-based research. Temple University created the materials in partnership with youth and caregivers from the Children’s Hospital of Philadelphia. A team of educators and software developers also contributed to the training.

“A key goal of the training is to overcome the greatest barrier to youth engagement in research, which is disempowerment,” said lead researcher Katherine Bevans, PhD, an associate professor at Temple University College of Public Health. “FYREworks provides practical tips and concrete tools that youth and caregivers can use to contribute meaningfully as research partners. The training includes a lot of real-life examples of authentic research partnerships that show youth and caregivers what they can expect. It teaches them that they have a tremendously important role to play in research.”

The training comprises three modules. The first introduces partnership-based research and helps teens and parents understand the value of their contribution. The second module describes how research is done, and the third focuses on skills and strategies research partners need to work well together.

The training includes a lot of real-life examples of authentic research partnerships that show youth and caregivers what they can expect.

Now that the training is in use, the development team is collecting feedback from users on improvements. The response has been overwhelmingly positive, said Amy Kratchman, LEND director of Family Collaboration, family consultant at Children’s Hospital of Philadelphia, and FYREworks’ lead family partner.

"FYREworks has already been written into some engagement proposals for multisite PCORI studies and is endorsed by the Children's Hospital of Philadelphia Research Institute for all partnership-based research studies," Kratchman said. “Investigators are telling us, ‘I need this.’ ”

Of the patient and family users surveyed, 100 percent would recommend the training to another research family partner, and all of the respondents felt FYREworks helped them—to varying degrees—prepare to participate on a research team, with the greatest benefit being to families who are new to research collaboration.

“Families who are already involved in advocacy and more experienced in research partnerships may know much of what is presented, but even for those families, the training helped boost their confidence,” Kratchman said.

To access the training, email info@fyreworkstraining.com.