This CESSDA Roadshow focused on how the DC® and DMEG® support researchers in their work on cancer and major chronic diseases using trusted datasets and metadata for impartial and evidence-based research.

The Roadshow brought together researchers from the social sciences with national service providers from CESSDA to offer practical guidance on good practices for data use and re-use so researchers can play a key role in sharing knowledge on this global challenge.

Demos, flash talks and interactive discussions also highlighted the importance of secure access to data, storage and protection when dealing with sensitive data related to health.

Highlights on CESSDA DC® and DMEG®

Alle Bloom, Research Associate with the UK Data Service at the University of Manchester, gave a demo on how to discover the resources in the CESSDA DC®: Discovery at national and European levels.

Gry-Hege Henriksen, Data manager and Special Adviser, Data Protection Service at NSD, the Norwegian Centre for Research Data, walked participants through the CESSDA DMEG®:

Store and Protect with the CESSDA Data Management Guide®.

User stories

The Roadshow featured three inspirational user stories enabled by CESSDA. The first came from Patty Doran, Research Associate in the Urban Ageing Research Group at the University of Manchester, shared her research findings: Resilience and living well beyond cancer: the relationship between emotional support and quality of life.

The second user story was a joint presentation from the Centre for Longitudinal Studies at University College London, Danielle Freitas Gomes and Karen Dennison, Records Linkage Managers and Nasir Raja, Research Fellow. They zoomed in on storing and protecting sensitive health data: Use case on Center for Longitudinal Studies - how to store and how to protect.

Beate Lichtwardt, Senior User Support and Training Officer at the UK Data Service, shared her expertise on secure data access: Use case on The Five Safes framework for accessing sensitive data via the SecureLab at UK Data Service.

Takeaways

Combining social data with administrative data reveals key trends about cancer and other chronic diseases, enabling much deeper insights while also saving money. There is a huge potential to conduct research on many different variables, such as emotional support, with a wealth of data in social surveys showing how people are really affected by cancer and other health conditions in both the short and long terms.

Researchers need access to high-quality data on diverse facets of healthcare, including comparisons across countries. Trusted archives enable researchers to easily discover the data, interrogate it and use it. This in turn helps generate evidence-based research at national and international level, also in terms of enabling informed decision making from a policy standpoint.

Service provider support plays a central role as they have in-depth knowledge about their data and can also offer practical support to researchers while imparting best practices on data management, including GDPR compliance. There are also other ways where service providers can assist, such as dealing with data in different formats and applying for secure data access on top of all the training resources available.

Interconnecting researchers is also important as it allows them to discover all other datasets that could yield insights, unleashing the potential for new datasets to enrich investigations. It is important to keep highlighting the wealth of data available.

On-demand Resources

Download the overview, slide deck and full recording on ZENODO.

The CESSDA.eu community and newcomers can re-use all the recorded resources on the Training via the YouTube Playlist for the Roadshow on Cancer and Chronic Diseases.

A news item by Trsut-IT