Report by Hannah Chafetz, Sampriti Saxena, Tracy Jo Ingram, Andrew J. Zahuranec, Jennifer Requejo and Stefaan Verhulst: “When young people are engaged in data decisions for or about them, they not only become more informed about this data, but can also contribute to new policies and programs that improve their health and well-being. However, oftentimes young people are left out of these discussions and are unaware of the data that organizations collect.
In October 2023, The Second Lancet Commission on Adolescent Health and well-being, the United Nations Children’s Fund (UNICEF), and The GovLab at New York University hosted six Youth Solutions Labs (or co-design workshops) with over 120 young people from 36 countries around the world. In addition to co-designing solutions to five key issues impacting their health and well-being, we sought to understand current sentiments around the re-use of data on those issues. The Labs provided several insights about young people’s preferences regarding: 1) the purposes for which data should be re-used to improve health and well-being, 2) the types and sources of data that should and should not be re-used, 3) who should have access to previously collected data, and 4) under what circumstances data re-use should take place. Additionally, participants provided suggestions of what ethical and responsible data re-use looks like to them and how young people can participate in decision making processes. In this paper, we elaborate on these findings and provide a series of recommendations to accelerate responsible data re-use for the health and well-being of young people…(More)”.