20 December 2018

YOUth data management plan: clarity for researchers, children and parents

They’ve been working on it for years, from the moment YOUth researchers started gathering data. Now the data management plan is actually here. The plan gives researchers guidance. And the parents of the children taking part in the research now know that the YOUth project is taking the safe storage of their data seriously.

A biobank containing human bodily material. Hours and hours of videos. Images from the MRI scanner. Completed questionnaires. Ultrasounds. IQ scores. These are just a few examples of the data that researchers collect for the YOUth survey. And then there’s the huge quantity of administrative data from the thousands of participating children and their parents, which is cleverly packaged in pseudo-codes in order to protect their privacy. All this data is necessary for the research: YOUth researches how child-specific factors and the environment influence the behaviour of children and the role their brain development plays in this. The children are followed for many years.

 

Guidance

Data manager Ron Scholten has described all these data streams in the data management plan. This plan specifies the context and the background to the data, and the infrastructure, organisation, processes, roles and responsibilities involved in the management of data by the YOUth project. 'The plan teaches researchers to store data in a structured way', says Ron. 'For example, it specifies which formats are suitable for their data, so it can be transferred and can continued to be used in the future. The plan provides guidance, because we describe the types of data we collect, where, and how often we make backups, for example. It also makes reference to a statement which makes researchers more aware of the importance of safe data management. Locking your computer if you leave your desk, not leaving participants alone in a room, etc.'

 

drs. Ron Scholten

Privacy

In the plan, YOUth also sets out the measures that are required to comply with the requirements of the GDPR, says Ron Scholten: 'We describe the full life-cycle of the data, from collection through storage to publication of the data. Sometimes we have to make choices. The University wants as much ‘open science’ as possible, but we hold video material of people, for example. How do we manage this data? That’s what we’re looking into at the moment. At the end of the day, privacy comes before openness.'

 

New role

Ron worked on the plan for a year, building on the work of predecessors who had been working on it since 2015. This involved a lot of brainstorming with others. 'The job of data manager is a new role. Every situation is unique and a huge amount of knowledge is developed. In order to produce an effective plan, I had to liaise with security and privacy experts. Utrecht University Library has a great deal of knowledge around data management. There are consultants and specialists (in metadata, open science, security, etc.) and there’s a websitewith all kinds of information and tools to help with data management (e.g. DMP Online). I use these resources a lot.' 

All the research data is stored in Yoda, a platform managed by ITS. The researcher who has collected the data can use it first.

Interdisciplinary collaboration

YOUth’s research is interdisciplinary. The plan also provides for this, says Ron. 'All the research data is stored in Yoda, a platform managed by ITS. The researcher who has collected the data can use it first. If another researcher also wants to use this data, he must submit a research proposal, followed by a data request. This researcher will not be granted access to the data until approval has been obtained and a Data Transfer Agreement has been signed. And we release as little data as possible: the researcher will only be granted access to data that he needs for his research.' 

 

kinderkenniscentrum YOUth onderzoek

Usage

What will happen to the plan now? 'One of the requirements of the funders of the YOUth study was that a data management plan should be drawn up. We will also supply this on request, to researchers, for example.' The plan will never be completely finished because it’s a working document that will be added to on an ongoing basis in parallel with the development of the YOUth project.