A new report by health and care partners in Cheshire and Merseyside has revealed public support for sharing de-identified health data for research and public health planning – subject to clear safeguards, transparent communication, and the ability to opt out.

Commissioned by the Data into Action programme, “The Use of Administrative Health Data for Research” presents findings from a public engagement initiative exploring how people feel about sharing de-identified health data for research and planning without explicit consent.

The sessions aimed to gather views on the proposed Cheshire and Merseyside Secure Data Environment (SDE), an online platform that securely brings together health and care data to allow health, care and research professionals to plan health and care services and carry out research.

The engagement included six focus groups, involving 46 residents from across the region between November 2023 and February 2024.

Discussions were led by the Liverpool City Region Civic Data Cooperative, with support from several partners including NHS Cheshire and Merseyside, Health Innovation North West Coast, and Lancashire and South Cumbria NHS Foundation Trust.

Participants expressed broad support for the use of health data for public benefit, recognising its potential to improve care and reduce health inequalities. Many participants felt that de-identification of data provided a sense of safety and made sharing without explicit consent acceptable when done responsibly.

Dr Emily Rempel, Public Participation Research Fellow at the Civic Data Cooperative, said: “Participants were clear public good should be at the core of all data sharing in the region – they expressed a strong hope that positive change was possible.

“Their concerns on artificial intelligence, data retrospectively, and improved communication will be part of future public engagement exercises in the region.”

The findings are helping shape the future of the Secure Data Environment and inform ongoing engagement.

To explore the findings and recommendations in full, download The Use of Administrative Health Data for Research report.