Research: Can communications create reasonable expectations about uses of health and care data? Insights from co-design and public testing

Findings from a public engagement project testing if co-designed communications can set clear expectations about health and care data use.

The National Data Guardian (NDG) commissioned this research to explore how health and care organisations can communicate effectively about the ways they use confidential patient information beyond individual care.

Evidence shows that while people generally support data being used for public benefit, such as improving services or planning care, many remain unaware of these routine uses. This lack of awareness can lead to surprise, even when people consider the use to be acceptable. The project set out to test whether clear, accessible communication materials can help people understand and expect specific uses of their data, reducing the risk of them being surprised by those uses.

Working with two ‘live’ NHS programmes: Screening Quality Assurance Service (SQAS) and local Population Health Management (PHM), we co-designed materials with members of the public and tested them through deliberative workshops, focus groups, and a large-scale survey. The research examined whether these materials could set accurate expectations about the aspects of data use people said mattered most: why it is accessed, who uses it, how it is used, and what safeguards protect it.

Findings show that well-designed materials can successfully inform people and set accurate expectations, even for complex uses of data. Most participants understood the materials and felt reassured by the safeguards described. They also valued transparency, even if they were not personally interested in reading detailed information.