This week at Unwritten Health: data gaps, Europe, and what comes next

I want to start this Unwritten Dispatches by setting the context for the week ahead, because there’s a lot coming together at once.

Last week, I ran a simple poll asking when people with lived experience usually get involved in health, research, or engagement work. The responses were familiar. Most people told me lived experience tends to come in after plans are already formed, or only when regulatory requirements make it unavoidable. Not a single vote said lived experience supports shaping decisions early.

That result didn’t surprise me, but it did sharpen something I’ve been thinking about for a while. When lived experience arrives late, it is asked to validate decisions rather than inform them. And once decisions are largely set, there is very little room for it to change outcomes in any meaningful way.

That leads directly to the question I’m asking this week.

Not whether lived experience is included, but why it so often struggles to shape decisions earlier.

So today’s poll builds on last week’s. I’m asking:

I’m asking this because these barriers are rarely about individual intent. They are structural. And unless we name them honestly, we keep designing workarounds instead of addressing the root cause

It would be easy to look at last week’s poll and treat it as confirmation of something we already believe. Lived experience comes in too late. Everyone nods. We move on.

But I think it tells us something more specific, and more uncomfortable.

The issue is not simply timing. It is power.

When lived experience is brought in after plans are formed, it is being positioned as feedback rather than intelligence. Feedback can be acknowledged, thanked, even incorporated at the margins, without ever altering the core direction. Intelligence, by contrast, has to be engaged with earlier, when uncertainty still exists and decisions are genuinely up for debate.

Late involvement is often framed as a practical constraint. Timelines are tight. Funding cycles are fixed. Decisions need to be made. These constraints reflect what systems choose to optimise for:

There is also a deeper issue at play around what counts as “real” data. Quantitative metrics are trusted because they feel objective and controllable, even when they are incomplete. Lived experience is often treated as anecdotal, even when it reveals patterns that formal datasets miss entirely. As a result, it gets sidelined until the point where it is least disruptive.

This is why the poll matters. It surfaces a design flaw, not a moral failure. Our systems are not built to absorb lived experience early, systematically, or at scale. So even well-meaning teams struggle to act differently.

And this is where the conversation needs to shift. From encouraging better behaviour, to building better infrastructure, so it doesn’t have to always feel like a fight.

During my career, I’ve spent a fair amount of my time looking beyond the UK to understand how other health systems are approaching inequality in practice, not just in principle. This isn’t about comparison for comparison’s sake. It’s about learning what happens after the framework slides are published and the strategy documents are signed off.

What’s striking is that across Europe, very different countries are quietly converging on similar approaches.

They measure gaps properly, not just overall outcomes, but differences by income, education, geography, and social position.

They target specific populations and places rather than relying on broad, universal ambition.

They fund the response with real money, legislation, and accountability.

France uses a detailed deprivation index to plan screening, prevention, and access at a local level, and has accepted that some people will never navigate standard care pathways. Rather than expecting compliance, it has built parallel access routes for people who are homeless, undocumented, or excluded from mainstream systems.

Germany has taken a harder line on responsibility. Prevention funding is written into law, with explicit requirements that it benefits socially disadvantaged groups and is delivered in everyday settings like schools, workplaces, and neighbourhoods. Insurers are legally obliged to act, not encouraged to.

Spain has been unusually explicit about naming the populations it is failing, including migrants and Roma communities, and has backed that honesty with hundreds of concrete actions and regional observatories designed to track whether policy interventions are actually changing outcomes.

Italy has confronted long-standing regional inequality by naming priority regions, ring-fencing funding, and investing directly in community health infrastructure to address healthcare poverty, mental health gaps, gender inequality, and low screening coverage.

I’ve pulled these observations together into a longer video this week, not because the UK should copy any of these models wholesale, but because they expose a shared truth. Equity efforts stall not because we lack intent, but because we struggle to operationalise it. The mechanics matter. Data matters. Access points matter. Funding flows matter.

I also want to share a brief update on where things stand with Unwritten.

We are now on the verge of securing advance SEIS and EIS assurance, which is an important milestone. It signals that the structure, intent, and direction of the business have been scrutinised and recognised as eligible for early-stage investment support.

This next phase of investment is focused and practical. It is about making our first hires, strengthening technical and operational capability, and building the foundations required to scale responsibly. It is about moving from concept and validation into execution, without losing the integrity of what we are trying to build.

Unwritten Health exists to address a very real problem. Entire populations are missing from the data that shapes health decisions. When those gaps go unseen, systems design confidently around partial reality. Investment at this stage is about closing that gap properly, not quickly, and building something that can support better decisions over the long term.

I’ll share more as this progresses, but I wanted to be transparent about where we are and why this moment matters.

Alongside releasing the video and continuing this work publicly, this is also a busy week behind the scenes.

I’ll be pitching Unwritten Health at the Empact Ventures pitch event tomorrow (Tuesday 10th), and later in the week attending a Founders Network meeting. These spaces are energising, but they also come with a particular kind of quiet pressure. When you’re building something that doesn’t fit neatly into an existing category, you spend a lot of time explaining the same problem from different angles, long before the market has language for it.

That can feel lonely at times, even when you’re surrounded by people. But it’s also where conviction gets tested. If you believe the gap is real and costly, you keep going, even when validation lags behind understanding.

As always, thank you for reading and for engaging with the thinking. I’ll share insights from this week’s poll in future Unwritten Dispatches, and from next week I’ll start slowing this European conversation down further by focusing on individual countries and specific design lessons.

For now, I appreciate you being here at the start of the week, and for staying with the work as it unfolds.

— Ashish.