Alliance members and other contributors are now working with workshop participants to produce an opinion piece based on the insights from this series of events and to call out for action to maximise the use of linked data for research, moving towards more streamlined and transparent data access mechanisms, with better guidance, resources, and legal toolkits for researchers.

The 3 working group sessions addressed the challenges faced when linking consented data with routinely collected health data and the benefits of doing so. The discussions explored the significance of data linkage in clinical cohorts, the integration of consented and non-consented data for longitudinal studies, and the challenges specific to health research programmes. Participants also discussed data linkage methods and effective communication strategies to inform patients/participants about potential future data linkage. The challenges facing researchers include inconsistent application procedures, lengthy data access timelines, and difficulties articulating the benefits of using linked data for research.

Tools and resources in development were presented and discussed including the “tube map” of data access, which endeavours to illustrate all ethics and governance approvals needed to link health and admin data across the four UK nations allowing researchers navigating the process to visualise the steps in the access process and the interplay between different types of approvals. The participants provided valuable feedback to further develop these resources into viable solutions to the challenges addressed. Details of these resources and tools, as well as the feedback from participants is available in the Linking Data for research Workshop #2 Summary Document.

Further information and workshop summaries can be viewed below.

Workshop outputs:

Linking Data for research Workshop #3 Summary Document
pdf - 173 KB
Linking Data for research Workshop #2 Summary Document
pdf - 208 KB
Linking Data for research Workshop #1 Summary Document
pdf - 231 KB