21 December 2018

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

From the moment YOUth researchers started gathering data, there has been a need for data management. Now there is a data management plan. 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.

YOUth is a large scale study following 6000 children in their development from embryo until early adulthood. Their research data contains a biobank with human bodily material, hours and hours of videos, images from the MRI scanner, completed questionnaires, ultrasounds and 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.

The plan guides researchers to store data in a structured way.

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 guides 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 continue 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.' As YOUth is a large scale study where a lot of privacy sensitive data is being collected, the data management plan had to be carefully put together. Therefore, the large number of data streams has been described down to the smallest detail. To get an insight in a data management plan of such an extensive study, take a look at the data management plan of YOUth.

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.'

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.

New role

Ron is a data manager at RDM Support, and helps the researchers of YOUth to safely handle the data. It involved a lot of brainstorming and discussions with a lot of people. '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. Via RDM Support I have access to a network of all these experts around data management. There are consultants and specialists (in metadata, open science, security, etc.) and there’s a website with all kinds of information and tools to help with data management (e.g. DMPonline). It is a big advantage that I have direct access to these resources.'

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.'

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.