News

My Take on Being Part of the Citizen Panel

Caroline Blunden

22nd Dec 2025

Caroline reflects on her experience as a Citizen Panel member attending online at the second workshop held recently at the Edinburgh Futures Institute, Edinburgh.

The series also includes contributions from Lidis (Citizen Panel Lead), Sarah and Steve.

My Take on Being Part of the Citizen Panel

What Actually Happened
15 of us regular people spent two years looking at how UK LLC decides who can use our health data for research. Half were from long-term health studies, half were from groups usually ignored in research – people like me.
We weren’t just asked what we thought once. We had proper conversations, made suggestions, they actually changed things, then came back and showed us. Then we did it all again.

The Stuff We Said They Should Do
First time round:
   •    Stop making forms so complicated
   •    Work out what “public benefit” actually means to real people
   •    Get someone like us into the decision-making room
   •    Don’t let government or companies skip the queue without good reason

Second time:
   •    Keep doing this – don’t let it be a one-off
   •    Think about fairness and justice, not just medical breakthroughs
   •    Determine acceptable framework for fast-track government access in case of demonstrable urgent need.
   •    Look at the ethics of AI before it’s too late.

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What Actually Surprised Me
We laughed. A lot. Over 100 times in our workshops. That might sound weird but it meant we were comfortable enough to be honest and challenge things.They listened. They changed meeting times, rewrote documents, even redesigned their process maps because we asked.
Our experiences counted. My story mattered as much as someone with a medical degree. That never happens.

The Good Bits
   •    Being treated like we knew stuff, not patronized
   •    Actually seeing changes happen
   •    Having people in the room from completely different backgrounds
   •    Not being rushed

The Worry
Will this carry on or was it just a nice project that gets forgotten? We’ve built something that works but only if someone keeps funding it and taking it seriously.

Why It Mattered to Me
For once, I wasn’t just data. I had a say in how my community’s information gets used.
We proved ordinary people can handle complex stuff and make sensible suggestions. We showed that including voices like mine makes research better and more trustworthy.
Other organizations are now watching what we did. That feels significant.

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Bottom Line
This Panel gave me a voice in decisions that affect my community’s data. It showed me that research can be done differently – with real partnership, not just consultation. And it proved that when you bring together diverse people and genuinely listen, you get better decisions.
The real legacy isn’t just our recommendations – it’s proving that this way of working actually changes things for the better.

Honest Assessment
This could genuinely change how research works – if they let it. But I’ve seen too many “consultations” that go nowhere. The difference here was the back-and-forth, the respect, the actual changes.

The question is: was this just a pilot project that ticks a box, or the start of something bigger?
I hope it’s the second one. Because this way of working – messy, human, real – gets better answers than the old “experts decide everything” approach.
My real worry? That they’ll say “great project” then go back to business as usual.