Our job is not to make people more trusting. It is to make healthcare more trustworthy.

Ten days since the Frequency of Exclusion report launched. Here is where things actually stand.

The conversations have started arriving. Not at the volume I hoped for. But they are arriving. A clinical operations director at a mid-size CRO who downloaded the report and forwarded it to her protocol design team. A patient strategy lead at a global pharma who said it was the first time he had seen the visit burden argument made with real community data behind it. A medical affairs consultant who has been trying to make this case internally for two years and said the report gave her something to put on the table.

That is who this was built for. Not the metrics. Those people.

And this week, something else happened that I want to share. The Equity Engine platform crossed 3,500 sign-ups. Over 3,500 people have chosen to share their lived experience with us. With full consent. With transparency about how their data will be used. With the expectation that it will change something real. That number is not a vanity metric. It is the size of a community that has decided, against a long history of reasons not to, to trust us. I do not take that lightly. Not for a single day.

This week I am in Seville for PEOF, where I am delivering a keynote called Trust from Day One. I want to tell you something that happened before I got anywhere near the stage.

Last week I posted about the 82% finding from Frequency of Exclusion on Linkedin. The finding that 82% of our respondents have felt their health concerns dismissed by a healthcare professional. Not a troubling minority. Not one in ten. Eighty-two percent.

A white man working in patient recruitment responded. His argument was essentially this: that I was making too large a leap. That one dismissal by one doctor does not produce distrust of an entire industry. That people are generally good at distinguishing specific experiences from systemic ones. That suggesting otherwise was taking a dim view of their intelligence.

My response was precise. I did not say one dismissal produces distrust of the whole industry. The finding is about repetition. The next clinician starts blank. And the next. And the person learns the same lesson again, across appointment after appointment, until the pattern becomes the conclusion. That is not a leap from a single event to a worldview. It is an inference from accumulated evidence. Which is, incidentally, exactly what research is supposed to produce.

He called me condescending. Then he stopped engaging.

I want to sit with that for a moment. Because it is not just an unpleasant exchange on a social media platform. It is a data point.

A white man working in patient recruitment, whose job is to understand why people do and do not engage with clinical research, looked at a finding built on the lived experience of over 1,200 people and chose to challenge the inference rather than ask what it means. When his challenge was answered directly, he reached for a personal attack and left the conversation.

A finding about dismissal was met with dismissal. And when that did not land, it was met with name-calling.

I am not writing this to settle a score. I am writing it because this exchange is a precise illustration of the problem the data describes. If the people working in patient recruitment are overriding community data with personal assumptions, we have not just an evidence problem. We have a culture problem. And culture problems do not close because the regulatory environment changes or the mandate arrives. They close when the people inside the industry are willing to look at the mirror the data holds up and ask uncomfortable questions about what they see.

The 82% is not a rounding error. It is not a framing choice. It is a majority. A majority of people reporting a structured experience of being dismissed by the healthcare system. That deserves more than a LinkedIn objection. It deserves a reckoning.

And if the instinct when confronted with that number is to find reasons why the people who experienced it might be wrong, that instinct is part of what produced the number in the first place.

I was called Ravi at this conference. I was called Annapoorna. When I checked in at the hotel, there was a moment. A beat. The kind that you notice because you have been noticing it your whole life. And then I spoke. And something shifted in the room. The tone changed. The body language changed. The assumptions recalibrated in real time.

I am a British Indian man attending a professional conference on patient engagement. I have spent twenty years in this industry. I have built a companies, published reports, spoken at summits alongside global pharma. And I still walked into this week being assigned other people's names and shocking people I had an English accent.

I want to be careful here, because I am not writing this to catalogue grievance. I am writing it because of what it revealed.

If this is what a professional like me experiences at the registration desk of an industry conference, what does the system feel like to a British Pakistani woman trying to decide whether to join a clinical trial? What does it feel like to a Black Caribbean man sitting in a consent meeting where nobody looks like him, where the information sheet reads like a legal document, where the nurse is kind but clearly in a hurry?

The answer is not abstract. The research gives us a direct window into it. When people across seven UK ethnic groups were asked about clinical research, the most common associations were not words like innovation, access, or partnership. They were words like guinea pigs, fear, cold, unsafe, death, and isolation.

That perception did not come from nowhere. It came from a system that was not designed around those people. A system that sends signals, sometimes subtle and sometimes not, about who belongs inside it and who is being processed by it.

This is the argument I am making on stage this week. And it is an argument I felt in my own body before I ever opened my slides.

The core provocation of my keynote at PEOF is a single sentence that I want to put in front of you here, because I think it is the most important reframe in this conversation.

Our job is not to make people more trusting. It is to make healthcare more trustworthy.

That distinction sounds simple. It is not. Because the moment you accept it, the entire problem moves. It stops being a communications challenge, a recruitment challenge, a community engagement challenge. It becomes a design challenge. And design challenges are solvable in ways that attitude campaigns are not.

Let me explain what I mean by trust as system feedback.

When communities respond to clinical research with caution, distance, suspicion, or refusal, the industry's instinct is to treat that as a patient problem. A knowledge deficit. A cultural barrier. Something to be overcome with better outreach.

But that framing has it backwards. What communities are expressing when they disengage is not ignorance. It is information. It is the accumulated signal of every interaction the system has had with them, or failed to have. Every consent form that read like a legal document. Every site that was difficult to reach. Every study that ended in silence with no results, no follow-up, no acknowledgement that they gave something. Every time they were called the wrong name and nobody corrected it.

Mistrust is system feedback. And if we treat it as a patient deficit rather than a design flaw, we will keep trying to solve it with communications when what it actually requires is infrastructure.

The Frequency of Exclusion research makes one finding that I think the industry has not properly absorbed. There is exactly one group in that work who reported no culturally specific barriers to clinical trial participation: White British people. Every other ethnic group was carrying additional weight before they even got to the consent form. Concerns about ingredients, body samples, family expectations, gendered dynamics, historical harms, and suspicion about what happens behind closed doors.

The system is not neutral. Some people arrive already burdened by considerations the protocol was never designed to recognise, let alone reduce.

And once you see that, it becomes much harder to keep using the language of hard to reach communities without asking who built the reach in the first place.

The framework I am presenting at PEOF this week identifies four moments where trust is either built or lost in a study.

Most clinical development programmes get one or two of those right. Very few get all four. And the communities most likely to disengage are the ones for whom failure at any single point is compounded by everything they already carried into the room.

This is not about shaming any organisation. It is about looking clearly at where the design produces different experiences for different people and asking what it would take to change that.

The line I keep coming back to is this: trust is lost when the participant experience communicates, we needed your data more than we valued your time. And trust is built when people can see that the system was designed to respect them before, during, and after the study.

That is not a soft aspiration. It is a specification. It describes a system that can be built. And it is the system this industry needs to build, not because it is ethically correct, though it is, but because the alternative is a clinical evidence base that keeps telling us how treatments work for the people who had the easiest time getting into the trial.

Two things from the regulatory and industry landscape this week worth knowing.

The Health Research Authority published updated figures showing that 88% of UK clinical trials reported involving patients or the public in research in 2025. That is up from 64% in 2024 and 54% in 2023. The direction of travel is right.

But the HRA's own commentary is where it gets interesting. The update signals an intent to move beyond counting involvement toward assessing quality against best-practice principles. In other words, the regulator already knows that 88% is measuring activity, not impact. It knows the difference between a box ticked and a design changed.

That shift from counting to quality is the regulatory system beginning to ask the question communities have been asking for years. Not did you involve patients. Did involving patients actually change anything?

At the ACRP conference this week, a Kansas Cancer Center leader described turnover in the clinical research workforce at between 35% and 61% per role as unsustainable. This matters for patient experience data because representative participation depends on stable, well-trained site teams. High turnover means inconsistent consent processes, inconsistent relationships with community organisations, and inconsistent follow-through on the kind of trust-building that takes time to develop and seconds to lose.

Sources: Health Research Authority, May 2026. ACRP conference recap, May 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.