Nothing about us without us. And more racist abuse in Seville 🙄

I landed back from Seville on Saturday, and I have a lot of feelings…

Not the tiredness. The energy. PEOF does something to you that most industry events do not. It reminds you why the work matters, who it is for, and what becomes possible when the right people are in the same room with their sleeves already rolled up.

This week I am back at my desk and the diary is full in the best possible way. New business calls I am genuinely excited about. Pitches that feel like the right conversations at the right moment. I can feel the traction. Not just see it in a spreadsheet. Feel it.

And alongside that, we have released MVP 2.0 of the Equity Engine platform. More on that below. But I want to start with Seville, because it deserves the space.

I have been to a lot of conferences. I say that not to sound jaded but to give proper weight to what I am about to say. PEOF in Seville was unlike anything else I have attended in twenty years of working in this industry.

185 people. Five continents. Every single one of them there because they genuinely care about what happens to patients in clinical research. No competitiveness. No positioning. Collaboration everywhere you looked.

The phrase I heard most across two days was nothing about us without us. And what made PEOF different was that it was not just said. It was lived. In the sessions, in the corridor conversations, in the co-creation exercises where people who had never met before built ideas together that could make a lasting difference. Hot heads and cool ideas, as someone put it in the room. That is exactly what it felt like.

For many of the people I met there, I had only ever known them as a name on a screen. An online connection. Someone I had admired from a distance. Meeting them in person was one of those reminders that the relationships behind this work are as important as the work itself. I am not ashamed to say I left some of those conversations feeling genuinely moved.

I presented alongside fellow IHI READI members on Trust in Clinical Research, as part of a session titled Trust from Day One: Co-Creating a Tool to Tackle Mistrust in Clinical Studies. What made the session work was not the presentations. It was what happened after them.

The room split into working groups and co-created the first prototype of a trust-building tool that will feed directly into READI's ongoing research and implementation work across Europe. That is not a workshop output. That is a document that will shape how sponsors approach underserved communities in clinical trials across eighteen countries. Sitting in that room and watching it happen was one of the most professionally significant moments I have had in years.

One framework from Day 2 that I have not been able to stop thinking about came from Vanessa Apea, presenting work on women's health. Four questions. Can she reach there? Can she understand what is happening? Will she be believed? Can we deliver what we promise? That is it. That is the whole infrastructure problem compressed into four questions that every protocol designer should be required to answer before a study goes live.

Thank you to everyone at PFMD, EPF, and EUPATI who made it possible. And to the new friends and collaborators I found in that building. You know who you are.

I need to tell you something that happened before I left Seville. I am writing it here because it belongs in this newsletter. And because the contrast with everything I have just described above is something I cannot let pass without naming.

I was at the airport, waiting for a friend who was flying in to spend a couple of days with me. A man approached and asked if I was his taxi driver.

I asked him why he would think that.

He told me it was because of how I look.

Then he kept going. Taxi for Mr Green. Taxi for Mr Green. Each time with a tone that made clear he found it amusing. When I showed frustration, that made it funnier. I walked him over to his family and asked directly why he was behaving this way. They laughed too.

I walked away. Frustrated. Sad. Ashamed in a way I am still trying to make sense of, because the shame was not mine to carry and yet there it was.

Two minutes later Mr Green came back. He walked up until his face was about an inch from mine. Dead eye contact. “Taxi for Mr Green?”

I want to be honest about what happened in my body in that moment. Fight or flight. Pure stress response. Everything in me wanted to react and everything in me knew I could not. I turned and walked out of the terminal to avoid a confrontation I did not start and did not deserve.

It coloured the last two days of a trip that had otherwise been one of the most meaningful of my professional life, but personally I felt deflated.

I am tired of writing about this. Genuinely tired. Not because it is not important but because the fact that I still have to write about it, in 2026, as a founder returning from an international clinical research conference where I had just delivered a keynote on trust, is its own particular kind of exhaustion.

But I will keep writing about it. Because awareness is the only tool I have in this moment. And because every time I consider staying quiet, I think about the communities whose experience of exactly this dynamic, compounded across every interaction with the healthcare system, shapes the data we published in Frequency of Exclusion.

I drew on my father's story in Seville. I talked about what it means to navigate a system that was not built for people like him. And then I stood in an airport and a stranger decided, based on how I look, that I was there to serve him.

If you want to understand why 82% of our respondents have felt dismissed by a healthcare professional, start here. Not in a policy paper. In an airport. With a man called Mr Green.

That is where it starts. Long before the consent form.

Now to more exciting times!!

Between version 1.0 and 2.0, Equity Engine moved from a working prototype to a live production platform. It is deployed at app.equityengine.health. It is ICO registered. It handles real data from real people with bank-grade security. And it is built, from the ground up, for the communities that health research usually misses.

130 features shipped. Let me tell you the ones that matter.

The platform now runs in 14 languages. Every page, every email, every privacy notice and terms of service has been rewritten using health literacy best practice. So our users can now understand exactly what they are signing up for, in plain English, without a law degree. That is not a small thing. That is the whole point.

The verification stack is ten layers deep. Fraud scoring, device fingerprinting, SMS verification, sequential pattern detection. We built this because the communities sharing their data with us deserve to know that data is protected, and because the clients using our insights deserve to know the data is clean. Both things matter equally.

Participants earn points for completing surveys and redeem them for vouchers automatically. No waiting for an admin to process a reward. No tokenistic gesture. Real compensation, in seconds, because people's time has value and we designed the platform to reflect that.

For clients: health charities, NHS bodies, pharma clients, the dashboard now shows sentiment trends, trust scores by organisation type, themes broken down by region and ethnicity, and real anonymised quotes from participants. One click exports it as a branded PDF ready to share with an executive team. The data that used to live in a qualitative report that got filed somewhere is now a live, structured, actionable dashboard.

And for academic researchers, there is now a partnership tier. Free access to the platform in exchange for citing Equity Engine in published work. Because the evidence base for health equity should be built collaboratively, and universities should not have to pay to contribute to it.

3,500+ users sentiment-scored and theme-extracted. 14 UK regions covered. The data is structured, and it is ready to sit alongside clinical and operational data in the systems where decisions get made.

This is what decision-grade lived experience data looks like in practice.

If you work in clinical development, patient strategy, or medical affairs and want to see what the platform does, reply to this email.

This week I am launching the next video in the clinical research and health equity series. this one goes somewhere the previous videos have not: the international picture.

Health equity in clinical research is not a UK problem or a US problem. It is a structural problem that plays out differently across every market but shares the same root cause. The video makes the international case for why this matters and what the data tells us across borders.

The life expectancy gap for the lowest income men in Germany is eight to nine years compared to the highest income group. That is not an outlier. It is a pattern that repeats across every major European market. And it is a pattern that clinical research, designed primarily around the populations easiest to reach, has been systematically failing to address.

The clearest signal from this week's regulatory landscape is one worth saying plainly: patient experience data is no longer a research artefact. It is becoming payment and regulatory infrastructure.

Three things happened this week that, taken together, tell a coherent story.

The FDA's CDRH launched its first publicly available Patient Engagement Course, a YouTube series for patients, caregivers, and industry on how patient input shapes medical device clinical studies. The FDA's Real-Time Clinical Trials pilot moved into its final selection phase, with two proof-of-concept trials already reporting endpoints to the agency in real time. And in the UK, MHRA and NICE announced a streamlined approval pathway that could bring some medicines to patients three to six months earlier, with patient experience evidence sitting at the heart of the value case.

At the same time, the FDA reminded over 2,200 sponsors and researchers that nearly 30% of required trial results are missing from ClinicalTrials.gov. That is not a compliance footnote. It is a transparency crisis. And it mirrors exactly what the HRA identified in the UK, where only 32% of trials ending in 2023 had published results on a public registry.

On health equity, the participation gap in the US is as stark as ever. African American communities make up around 13% of the US population and between 5% and 8% of clinical trial participants. A piece this week outlined three persistent barriers: mistrust, access, and underrepresentation in the evidence base itself. None of those are new findings. All of them remain unresolved.

The finding that landed hardest for me this week came from an investigation into Mississippi's opioid settlement advisory council. Zero voting members had personal experience of opioid use disorder. A council deciding how opioid settlement funds should be spent, with no one around the table who had lived the thing being addressed.

Nothing about us without us. I heard that phrase fifty times in Seville last week. Mississippi is a reminder of what it looks like when that principle is ignored at the highest levels of policy.

And one signal worth watching: the DIA is running a pilot session this month on using synthetic AI patient personas to augment real patient input in trial materials review. There is a version of this that accelerates genuine understanding and a version that replaces the inconvenient work of actually listening with a simulacrum that looks like listening. The difference matters enormously.

Sources: FDA, June 2026. Pharmavibes, June 2026. USC Center for Health Journalism, June 2026. Interim Visits, June 2026. EURORDIS, June 2026.

Thanks for reading. This newsletter exists because I believe the right framing, in the right hands, changes decisions. If it did that for you this week, even a little, that's enough.

Ashish.