21 October 2020
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Keen on sharing data for health research

Sharing data is essential for making optimal use of data and opens new research opportunities. That is why BBMRI.nl and Health-RI host a series of expert sessions on making health and healthcare data available for research. BBMRI.nl interviewed two experts at Statistics Netherlands (CBS) to ask them about the role of CBS.

Under strict conditions CBS provides remote access to so-called microdata sets, pseudonymized data that link to individual persons, households, businesses and institutions. Fatima El Messlaki and Ivo Gorissen are account managers at CBS and avid ambassadors for the CBS microdata services. They tell why they are participating in the expert sessions.

Ivo: “When I hear about researchers in UMC’s struggling to bring together datasets on patient treatments, I just can’t wait to start working on it with them. There are so much more possibilities if we start combining data!”

Fatima adds: “We know researchers often run into obstacles to data sharing, technical and legal aspects. For instance, sharing personal data. CBS has the tools and the legal possibilities to tackle GDPR related questions. We want to share all the possibilities. I noticed at Health-RI conferences that not everyone is familiar with our microdata services and the ability to use microdata for their own research. We do get many requests to share data for research, but we always aim to increase these numbers in certain areas.

Ivo: “If a researcher in a specific field or institute starts using our microdata we often see the use of these data spreading throughout the whole institute or research area, like wildfire. And that is good.”

CBS also invites new parties to upload their datasets. Fatima: “We already have the large organisations, like Palga and IKNL, but we are always interested in other organizations to join and supply new research data.”

Remote access to datasets

Researchers can work with microdatasets independently. If there is no suitable dataset for a particular research question, CBS can help to compile a specific dataset. It is also possible to upload datasets for linking to the CBS datasets. The enriched dataset can then be used.

Ivo: “There are many different datasets that offer many possibilities for researchers. Let me give you an example: Most transgender operations are being done in the Amsterdam UMC. The Amsterdam UMC had a large research project to analyze the long-term effect of transgender treatment. Some of these treatments make the bones turn brittle. It is extremely difficult to find data about bone fractures for these patients. These data are registered locally but will never end up in the patient files of the AUMC. However, linking with CBS data made that analysis possible in such a way that privacy was guaranteed.”

Fatima mentions another option that is high in demand: “Different organizations, for instance PALGA and IKNL, can upload their data for a project in the CBS-remote access environment, combine it, couple it with CBS microdata and start analyzing.”

A new option for the future might be that CBS offers the opportunity to analyze very large datasets. This through a cooperation with dataplatform ODISSEI  that gives access to the supercomputers of SURFsara. This is already an option for social science research, the focus of ODISSEI.

Supporting researchers

CBS supports new and experienced researchers in several ways. Ivo: “Researchers only have access to the data they require to answer their specific research question. Experts at CBS will guide investigators that are new to CBS-data through choosing the right microdatasets. We also want to make sure that new investigators are aware about data-safety. It should be top of mind and we will test them each time they login to their project.

Experienced users of microdata are welcome at a ‘microdata-dag’ twice a year. In April 2018 there was a microdata meeting specific for health research. Nowadays they are all virtual which allows more people to participate. Check the calendar of microdatadagen

General information about the use of CBS microdata

Full overview of CBS micro-datasets  (Dutch only).
Check Health-RI.nl for a concise overview of CBS services

BBMRI.nl and Health-RI have joined forces implementing a health-data infrastructure that enables optimal use of biosamples, imaging and data in research to prevent, diagnose and treat disease.

They host three virtual expert sessions to discuss the current hurdles, experiences and best practices how to make health(care) data available for scientific (re)use. CBS will be presenting on the 29th of October. A second presentation will be given by the Nederlandse Hart Registratie. The sessions will be in Dutch.

If you would like to register for the expert sessions. Please send an email to Robin Verjans