Public perspectives on using health data in Lancashire & South Cumbria
Lancashire & South Cumbria’s Secure Data Environment (SDE) is part of a national NHS network that enables researchers and planners to use de-identified health data safely to improve care, tackle inequalities and speed up discovery. The North West received £14m to build this capability together across Greater Manchester, Cheshire & Merseyside, and Lancashire & South Cumbria.
What we did
We explored people’s views on the use of health data without explicit consent. Specifically for population health, planning and research. We listened to local people through small group conversations, two town-hall events (Kendal and Preston) and community outreach, including a family health festival. We prioritised inclusion and engaged residents from diverse backgrounds and experiences.
What we heard
- Strong support for using health data for research and planning when personal identifiers are removed and safeguards are clear. People want simple explanations of how projects are chosen and how benefits reach communities.
- Public involvement and empowerment: The public want to be in the rooms where critical decision over data use are made and more actively engaged in the development of research, research infrastructure and policy that impacts data use.
- Trust grows with transparency: people value clear information about who can access data, how decisions are made, and how to opt out.
- Concerns to address: commercial involvement, decision consistency and whether research leads to visible, local improvements.
How we keep data safe
We use the Five Safes approach and a “data access not data sharing” model so data stays inside secure environments and access is monitored and audited. This reduces copying, human error and misuse while speeding up approvals for public-benefit projects.
What happens next
In 2025 we will:
- Set up a Data Access Committee with public members alongside clinical, technical, research and data protection experts to judge projects in the public interest. We will publish these decisions within our Data Use Register, including rejections and work to make this information more accessible and lay friendly.
- Publish a Data Use Register – We will publish these decisions within our Data Use Register, including rejections. We will work to make this information more accessible and lay friendly.
- Improve mass communication about safeguards, opt-outs and results, and focus work where it reduces inequalities (Core20PLUS5 clinical priorities).
- We’re also exploring a “Safe Impacts” commitment: routinely reporting real-world outcomes so the public can see benefits, not just promises. Moving beyond safe data usage to high-impact and value return for the public.
Read the full report (PDF) and see what we’re building together.
Questions or want to get involved? Email lsc.sde@lthtr.nhs.uk
