New report explores what the public wants when organisations access health data

A new report published today (14 May 2026) shares findings from a public engagement activity exploring how people in Cheshire and Merseyside feel about organisations accessing health data for research and innovation.

The report, Public views on organisations accessing health data, is based on an interactive activity run by the Data into Action team at the Festival of Data at ACC Liverpool in February 2026. Participants stepped into the role of a data access decision-maker and rated fictional scenarios involving different organisations, data types, and community benefits.

Although the activity was designed as a short engagement exercise rather than a formal research study, clear themes emerged from participants' responses.

The report highlights several emerging themes. Participants expected something more than payment alone when organisations request access to health data. Reinvestment in the local NHS was seen as positive, but not enough on its own to justify approval. Projects linked to direct improvements in patient care locally received the strongest support, and transparency – such as publishing results openly in plain English – also mattered to participants.

The activity also found that people wanted more information about how data would be protected, how organisations would be monitored, and how public benefit would be delivered. Concerns about privacy, data protection and organisations making profit from health data remained important.

The findings echo themes from previous public engagement work carried out as part of the Data into Action programme, reinforcing that people care more about why health data is used than who is using it.

Andrea Astbury, Associate Director for the Data into Action strategy, said:
“The views and experiences of local people are central to how we use health data to improve care in Cheshire and Merseyside."

“This activity gave us a valuable opportunity to hear directly from local people about what matters when organisations request access to health data. The findings will help us continue to shape our approach to public value, transparency and accountability.”

The engagement activity was co-designed with the Data into Action Patient and Public Advisory Group (PPAG), whose members helped shape the questions and ensure the exercise reflected issues that genuinely matter to local people.

The programme will use the findings to continue working with the PPAG on what "public value" should mean when organisations request access to health data, and to inform future engagement activities on this topic.

Read the full report: Public views on organisations accessing health data

To find out more about the Data into Action programme and opportunities to get involved, visit the Get involved page.