Getting Section 251 approval from the Health Research Authority’s Confidentiality Advisory Group (CAG) isn’t just about paperwork. It’s about proving that when confidential patient data is used without consent, it’s done responsibly, with the right safeguards, and in a way that earns public trust.

For two secure data environments (SDEs), a key challenge was demonstrating that people were comfortable with authorised NHS experts processing their identifiable health and care data to create anonymised and pseudonymised datasets which could be used for research. But more than that, CAG wanted to see that public involvement wasn’t just a one-off exercise—it had to be meaningful, ongoing, and embedded in the way the SDEs operate.

Standing out for all the right reasons

When the approvals came through, the feedback was glowing. 

The CAG panel specifically highlighted the excellent comms and patient and public involvement and engagement (PPIE) work that had been undertaken. The Chair made a point of saying it was obvious this wasn’t just a tick-box exercise, but a long-term commitment to keeping the public involvement and engagement in the use of their data at the heart of the SDE. They even called it exemplary.

That’s a big deal. Too often, public involvement in the use of their data feels like a formality—something done once and filed away. But both these SDEs showed that when it’s done well, PPIE isn’t just about securing approvals; it’s about building trust through honesty and transparency with local people, engaging hard to reach groups, and making sure that public concerns are openly embedded into the way their data is handled.

What we did

We worked with the SDEs to design public engagement that truly mattered. That meant:

• running meaningful conversations with diverse communities to understand how they felt about data access
• ensuring feedback led to real changes in governance and transparency
• embedding ongoing dialogue, so public voices continue to shape how these SDEs operate.

We used all the skills we’ve honed over years of supporting public involvement in NHS service change to make a complex area easier to understand. Digital and data transformation in health is full of technical jargon, but we cut through that, making sure the way data is used was explained clearly and in a way people could trust.

The result? Two successful approvals, and a high standard for PPIE

With a strong track record of public involvement and clear, ongoing communication, both SDEs secured Section 251 approval—showing that they are serious about handling NHS data in a way that is ethical, legal, and publicly trusted.

Public trust in health data and NHS service change doesn’t happen overnight, and it doesn’t happen by accident. 

If you want to get it right, let’s talk.

Blog by: Caroline Latta