Case study: Developing resources to facilitate public conversations about the use of linked address-based data for...

Area of Science:

• Health Services Research
• Data Science
• Public Health

Background:

• Unique Property Reference Numbers (UPRNs) are mandated UK identifiers suitable for pseudonymised data linkage for research.
• Public trust in using patient data for research is established, but not specifically for address-based linkage using UPRNs.

Purpose of the Study:

• To build public trust in household-level address-based data linkage.
• To develop and test communication materials for public deliberation on UPRN data usage.

Main Methods:

• Collaborative development of a prototype website and resources with public advisory groups.
• Testing information materials and interactive tools through workshops with diverse community residents.
• Iterative refinement of resources based on participant feedback regarding accessibility and engagement.

Main Results:

• Dialogue highlighted the need for accessible language, less text-heavy formats, and interactive tools.
• Visual materials must reflect diverse demographics for relatability.
• Adapting information delivery formats (digital/physical) is crucial for engagement.

Conclusions:

• A tested toolkit now supports conversations about research using address-linked patient data.
• The toolkit is disseminated and freely available for the research community.
• This work addresses a gap in understanding public attitudes towards UPRN-based data linkage.