Expert session: how to make qualitative data FAIR

Data management coordinator Didi Lamers supported SPREAD+ and NDPI by organising an expert session – in the form of a workshop – on making qualitative data FAIR. Due to its success, this will now be held annually.

The SPREAD+ consortium is investigating how interventions and products for people with dementia can be improved and is addressing any gaps. NDPI is exploring how best to deliver lifestyle interventions that reduce the risk of dementia to those most at risk of developing the condition.

Dilemmas

Both consortia frequently use qualitative research methods (such as questionnaires, observations and focus groups). And both consortia are keen to make their data more FAIR – particularly more accessible – so that more researchers can use it. However, researchers encountered questions and dilemmas. Lamers therefore initiated a dialogue.

“If you want to reuse qualitative data, you need to think about how to organise and document it. And about how to de-identify personal data whilst retaining enough context to ensure the dataset remains comprehensible.” Lamers refers to de-identification because this is more accurate than anonymisation: “Strictly speaking, 100 per cent anonymisation is not possible.”

The most pressing issue

One of the most pressing issues amongst researchers appears to be how to balance the benefits of making qualitative data FAIR against the drawbacks: (mitigating) privacy risks for participants and the time investment required for FAIRification.
Collaboration with the DANS centre of expertise

Discussions with the consortia made it clear that an expert session in the form of a workshop could be helpful. To develop this, Lamers enlisted Ricarda Braukmann and Deborah Thorpe from DANS, the Dutch national centre of expertise for research data. DANS supports researchers, institutions and data professionals through training and knowledge exchange in the fields of research data management, FAIR data and data reuse.

Guide

During the workshop ‘FAIR Research Data Management for Qualitative Data’, DANS contributed its expertise on qualitative data. This theoretical section was largely based on the DANS guide ‘Making Qualitative Data Reusable’, which covers topics such as informed consent, de-identification, documentation and data sharing.

Weighing up the costs and benefits of FAIR

Lamers led the second part, which focused on issues specific to dementia research. This included a discussion on all the considerations that come into play when making qualitative dementia data FAIR. These included striking a balance between the costs and benefits of making data FAIR (and available subject to conditions) versus the time investment and protection of privacy.

Lamers: “To make that assessment, you need insight: which qualitative data can be reused for what purposes? What are the realistic risks associated with privacy-sensitive data? And which de-identification techniques can be used?”

In this way, Lamers linked theory to research practice. Researchers were also able to discuss their projects during the session.

Annual follow-up

Afterwards, workshop participants proved to be very enthusiastic. Lamers therefore devised a follow-up, in consultation with SPREAD+. The intention is to hold an annual workshop from now on for consortia in the Dementia Research Programme entering their second phase.

The first is scheduled for March 2027. It will include some theory, but the workshop will primarily focus on discussion and the practical application of data FAIRification to participants’ own research.

Support throughout the research process

“In the years that follow, we want to reflect on progress with the same group and adjust plans where necessary,” explains Lamers. “The aim is also to gradually address topics that only become relevant later in the research process.” The idea behind this is to continue supporting new junior researchers throughout their research projects. Lamers: “But of course, senior researchers working with qualitative data are also very welcome.”

Meer lezen

• The presentation and references from the workshop ‘FAIR Research Data Management for Qualitative Data’, organised by DEMPACT in collaboration with DANS, can be found at Zenodo.com.
• Previously, ahead of the ‘DCC Spring Training Days 2025’, DANS also ran the workshop ‘Making Qualitative Data Reusable’, which focuses on tackling common challenges relating to qualitative data; see zenodo.org.
• DANS also shared an article about the expert session organised by DEMPACT and DANS: dans.knaw.nl.