GDPR in research: opportunity to collaborate and to improve research processes

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On Thursday 30 August and on Friday 31 August TU Delft Library hosted two events dedicated to the new European General Data Protection Regulation (GDPR) and its implications for research data. Both events were organised by the Research Data Netherlands: collaboration between the 4TU.Center for Research Data, DANS and SURF (represented by the National Research Data Management Coordination Point).

First: do no harm. Protecting personal data is not against data sharing

On the first day, we heard case studies from experts in the field, as well as from various institutional support service providers. Veerle Van den Eynden from the UK Data Service kicked off the day with her presentation, which clearly stated that the need to protect personal is not against data sharing. She outlined the framework provided by the GDPR which make sharing possible, and explained that when it comes to data sharing one should always adhere to the principle “do no harm”. However, she reflected that too often, both researchers and research support services (such as ethics committees), prefer to avoid any possible risks rather than to carefully consider them and manage them appropriately. She concluded by providing a compelling case study from the UK Data Service, where researchers were able to successfully share data from research on vulnerable individuals (asylum seekers and refugees).

From a one-stop shop solution to privacy champions

We have subsequently heard case studies from four Dutch research institutions: Tilburg University, TU Delft, VU Amsterdam and Erasmus University Rotterdam about their practical approaches to supporting researchers working with personal research data. Jan Jans from Tilburg explained their “one stop shop” form, which, when completed by researchers, sorts out all the requirements related to GDPR, ethics and research data management. Marthe Uitterhoeve from TU Delft said that Delft was developing a similar approach, but based on data management plans. Marlon Domingus from Erasmus University Rotterdam explained their process based on defining different categories of research and determining the types of data processing associated with them, rather than trying to list every single research project at the institution. Finally, Jolien Scholten from VU Amsterdam presented their idea of appointing privacy champions who receive dedicated training on data protection and who act as the first contact points for questions related to GDPR within their communities.

Lots of inspiring ideas and there was a consensus in the room that it would be worth re-convening in a year’s time to evaluate the different approaches and to share lessons learned.

How to share research data in practice?

Next, we discussed three different models for helping researchers share their research data. Emilie Kraaikamp from DANS presented their strategy for providing two different access levels to data: open access data and restricted access data. Open datasets consist mostly of research data which are fully anonymised. Restricted access data need to be requested (via an email to the depositor) before the access can be granted (the depositor decides whether access to data can be granted or not).

Veerle Van Den Eynden from the UK Data Service discussed their approach based on three different access levels: open data, safeguarded data (equivalent to “restricted access data” in DANS) and controlled data. Controlled datasets are very sensitive and researchers who wish to get access to such datasets need to undergo a strict vetting procedure. They need to complete training, their application needs to be supported by a research institution, and typically researchers access such datasets in safe locations, on safe servers and are not allowed to copy the data. Veerle explained that only a relatively small number of sensitive datasets (usually from governmental agencies) are shared under controlled access conditions.

The last case study was from Zosia Beckles from the University of Bristol, who explained that at Bristol, a dedicated Data Access Committee has been created to handle requests for controlled access datasets. Researchers responsible for the datasets are asked for advice how to respond to requests, but it is the Data Access Committee who ultimately decides whether access should be granted or not, and, if necessary, can overrule the researcher’s advice. The procedure relieves researchers from the burden of dealing with data access requests.

DataTags – decisions about sharing made easy(ier)

Ilona von Stein from DANS continued the discussion about data sharing and means by which sharing could be facilitated. She described an online tool developed by DANS (based on a concept initially developed by colleagues from Harvard University, but adapted to European GDPR needs) allowing researchers to answer simple questions about their datasets and to return a tag, which defines whether data is suitable for sharing and what are the most suitable sharing options. The prototype of the tool is now available for testing and DANS plans to develop it further to see if it could be also used to assist researchers working with data across the whole research lifecycle (not only at the final, data sharing stage).

What are the most impactful & effortless tactics to provide controlled access to research data?

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The final interactive part of the workshop was led by Alastair Dunning, the Head of 4TU.Center for Research Data. Alastair used Mentimeter to ask attendees to judge the impact and effort of fourteen different tactics and solutions which can be used at research institutions to provide controlled access to research data. More than forty people engaged with the online survey and this allowed Alastair to shortlist five tactics which were deemed the most impactful/effort-efficient:

  1. Create a list of trusted archives for researchers can deposit personal data
  2. Publish an informed consent template for your researchers
  3. Publish on university website a list of FAQs concerning personal data
  4. Provide access to a trusted Data Anonymisation Service
  5. Create categories to define different types of personal data at your institution

Alastair concluded that these should probably be the priorities to work on for research institutions which don’t yet have the above in place.

How to put all the learning into practice?

The second event was dedicated to putting all the learning and concepts developed during the first day into practice. Researchers working with personal data, as well as those directly supporting researchers, brought their laptops and followed practical exercises led by Veerle Van den Eynden and Cristina Magder from the UK Data Service. We started by looking at a GDPR-compliant consent form template. Subsequently, we practised data encryption using VeraCrypt. We then moved to data anonymisation strategies. First, Veerle explained possible tactics (again, with nicely illustrated examples) for de-identification and pseudo-nymisation of qualitative data. This was then followed by a comprehensive hands-on training delivered by Cristina Magder on disclosure review and de-identification of quantitative data using sdcMicro.

Altogether, the practical exercises allowed one to clearly understand how to effectively work with personal research data from the very start of the project (consent, encryption) all the way to data de-identification to enable sharing and data re-use (whilst protecting personal data at all stages).

Conclusion: GDPR as an opportunity

I think that the key conclusion of both days was that the GDPR, while challenging to implement, provides an excellent opportunity both to researchers and to research institutions to review and improve their research practices. The key to this is collaboration: across the various stakeholders within the institution (to make workflows more coherent and improve collaboration), but also between different institutions. An important aspect of these two events was that representatives from multiple institutions (and countries!) were present to talk about their individual approaches and considerations. Practice exchange and lessons learned can be invaluable to allow institutions to avoid similar mistakes and to decide which approaches might work best in particular settings.

We will definitely consider organising a similar meeting in a year’s time to see where everyone is and which workflows and solutions tend to work best.

Resources

Presentations from both events are available on Zenodo:

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