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Better data findability to accelerate research

Making clinical and research data easy to find: that is the goal of a new project in the Princess Máxima Center. Using innovative technology, both researchers and healthcare professionals will soon be able to easily find which data and datasets are available within the Máxima.

Data is collected from all children treated at the Máxima, provided parents and child have given consent. Such data covers everything: their precise diagnosis, the treatment and how it works, specific faults in the DNA of the tumor, their quality of life, and much more. Enormous amounts of information are also produced within the 35 research groups: every experiment produces new data. The new DISQOVER project aims to create an overview. Menno de Vries leads the project from IDT. He says: ‘Making data in the Máxima easy to find makes our research more efficient.’

How do you find data?

In practice, the search for data can currently be difficult and time-consuming. Particularly if clinical data is needed on a specific tumor type, or on a historical set. And within research, data still too often gets stuck in research groups or core facilities, while it could also be valuable to other researchers. Such ‘data silos’ can lead to the loss of data and unnecessary repetition of work. In science, therefore, data is often referred to with the abbreviation FAIR, which stands for Findable, Accessible, Inter-operable and Re-usable.

‘We see that FAIR initiatives often use techniques in which datasets with manually entered labels and keywords are stored,’ says De Vries. ‘Unfortunately, these are difficult to find in practice, because researchers can often only find the datasets known to them. But datasets that someone is completely unfamiliar with can also be relevant to their research. To make all data easy and accessible to find? That requires a thoroughly different, and also technical, approach.’

Innovative technology

The Máxima has decided to invest in a solution and technology to optimally organize the findability of data. In a collaboration between the Trial and Data Center, the Big Data Core facility and the IDT department, the decision was made to purchase the so-called DISQOVER technology. With intuitively searchable dashboards, the program makes various data sets easy to find. The ambition is to make DISQOVER accessible to all employees in care and research. In this way, the project contributes to an optimal exchange of knowledge between research and care.

Healthcare and research data can contain sensitive information. An important element in DISQOVER is therefore that the program only shows data that is both pseudonymous and internally embargo-free. In other words: the content of (pre)clinical studies and medical records remains protected, but for each dataset it is determined which 'layer' of it can be viewed by everyone. For example, what data has been collected and who owns it? With this basic information, a researcher can compile a selection of the desired data. She can then request the full content through the relevant consent procedures.

Michiel Kooper, managing director IDT at the Máxima, concludes: ‘With this next level search technology, we will be able to safely open up more clinical data for researchers than ever before, helping us to improve our care for children with cancer and to accelerate our pediatric oncology research.’