A Novel Way to Engage Youth in Research: Evaluation of a Participatory Health Research Project by the International Children's Advisory Network Youth Council

Background: Few academic and clinical institutions identifying systematic methods of creating and subsequently evaluating the impact of youth-driven research programs. Little is known about the impact of a participatory approach in adolescent health research and the specific benefits youth derive from such experiences. This study evaluates the feasibility, benefits and limitations of an international participatory health research (PHR) project involving young patients as co-researchers. Methods: Youth co-researchers collaborated over the course of one year in a PHR project. A standardized feedback survey and qualitative interview were employed to evaluate the impact of co-researchers' personal and academic growth. Limitations were documented by the Council Chair in real time and included limiting events or identified challenges. Feasibility was determined by the percentage of youth members who actively participated, defined as 75% or more, and the outcome of a completed project. Findings: Sixteen adolescents aged 13-23 years representing 9 global academic institutions from the International Children's Advisory Network Youth Council participated as youth co-researchers (YCR). A difference was seen in the impact they believe youth can have in healthcare prior to and after involvement. 81% of participants reported interest in health research and 100% stating that they felt that their participation made an impact on pediatric healthcare. 75% of youth were interested in pursuing a career in healthcare prior to the project with no significant difference in results after participation. Interpretation: Youth reported growth in areas of cooperative learning and advocacy with tangible examples of improvements in leadership skill. This shift in roles from patient to research partner is echoed in the strong conviction of the newfound possibilities of accomplishment as a group. Further work is required in this area to more clearly define the impact of youth as PHR researchers. Funding Statement: The authors state: "No sources of funding to declare." Declaration of Interests: The authors state: "No conflict declared." Ethics Approval Statement: All materials were reviewed and approved by the Connecticut Children’s Medical Centre Institutional Review Board #18-081.