Facilitating FAIR data on youth

When research data about youth are Findable, Accessible, Interoperable and Reusable (FAIR), more people can use them to solve pressing issues concerning youth. Despite the benefits, the process of making your data available for sharing can seem daunting. Dynamics of Youth wants to make it easier for researchers to make their data FAIR. And you can help us help you!

Interdisciplinary exchange
To solve the complex issues that concern youth, we need the input of individuals from a wide range of disciplines. Youth development and wellbeing is shaped by many biological and environmental influences. Researchers across the faculties at Utrecht University (UU) and University Medical Center Utrecht (UMCU) collect information about youth and the many factors that can impact their lives. When these data are findable, accessible, interoperable and reusable (FAIR), they can be used to answer a wide range of questions. Researchers from different disciplines can exchange or combine datasets to form novel collaborations, start exciting projects, and resolve pressing issues.

Path to FAIR data
However, most datasets about youth are currently not easy to find, nor are they readily available for re-use. Although most researchers would like their data to have more impact on science and society, they also experience challenges in making their data more FAIR. It goes without saying that we cannot simply share personal data about minors with the world in a public fashion. Yet it is difficult to know precisely which data can be safely shared, with whom, and under which circumstances. Thankfully, there are many great initiatives, tools, guidelines and courses within Utrecht University, for example provided by Research Data Management Support, Information and Technology Services, the Open Science Programme, and the Open Science Community Utrecht. However, it can be difficult to see the forest for the trees and know exactly which steps you need to take when you are working with data concerning babies, children and adolescents. Dynamics of Youth and Research Data Management Support are working together to make this path to FAIR data more clear.

YOUth-Cohort as trailblazer
Within Dynamics of Youth, the YOUth Cohort Study is a trailblazer for FAIR data. The tools and infrastructure that have been developed for collecting, storing, and sharing the YOUth data in a safe, sustainable and FAIR way, can help other research teams make their data more FAIR. For example, YODA, an advanced data management system, was developed for YOUth, but is now being used by other researchers across Utrecht University, as well as at other Universities, including ones in other countries. In addition, the YOUth team has developed documentation that is key to FAIR data, such as a research management plan, a profile paper (detailed description of the study), a Data Access Protocol, a Prospectus (overview of all data), and a data request form. These documents can serve as examples for researchers who require similar documentation for their data. Furthermore, together with the five other cohort studies that are part of the Gravitation project Consortium on Individual Development (CID), YOUth is developing a format for describing data about youth that other researchers could also use as a standard to harmonize the descriptions of their data and make them more findable.

Tools
YOUth is thus paving the road to FAIR data for other DoY researchers, forming a so-called "desire path" (in Dutch: "olifantenpad"). However, DoY researchers have a variety of backgrounds, questions and types of data. Neha Moopen and Dian de Vries are investigating if and how existing tools - including those that were developed for the YOUth cohort - can be used for the diverse datasets within Dynamics of Youth. They will also adapt and develop tools where needed. The PROactive cohort, comprising of chronically diseased children at the Wilhelmina Children's Hospital (WKZ), is being used as a first test case in this process. These are ways in which we are investigating how we can make the road to FAIR as easy as possible for the whole DoY community.

Next steps
In the coming newsletters, we will be providing updates on the developments related to FAIR data. We will illustrate the steps taken to make the PROactive data more FAIR. And we will present tools that can help you make your data more FAIR. But we also need your input!

What can you do?
- Letting us know about the challenges you foresee or have encountered with regards to FAIR data.
-Testing the tools we share and giving us feedback.
-Telling us about ways in which you have made your data more FAIR and other suggestions you may have.

More information
Do you want to know more about this project? Please contact Dian de Vries and Neha Moopen. Or write on our padlet.