Finding 1
82%
of this community have felt their health concerns dismissed by a healthcare professional, occasionally or often. This is the dominant experience. It is the root cause beneath everything else in this report.
Four key findings
Before you read the full story,
read these four findings.
They define the dataset. Each is significant in isolation. Together, they describe a system that has structurally failed to earn the trust, engagement, or participation of communities that represent a growing proportion of the UK population.
Finding 2
83%
would be more likely to participate in a clinical trial if it were co-designed with their community. 45% would be significantly more likely. This is a quantified behaviour-change signal, not a soft preference.
Finding 3
45%
were told about a clinical trial by a healthcare professional and did not fully understand what they were being told. Graduate-educated respondents were the most confused group. The problem is clinical research language, not literacy.
Finding 4
Structural barriers.
Not trust.
Not trust.
The top two barriers to clinical trial participation are logistics and design, not trust. The industry has been solving for third-place problems while first-place problems go unaddressed. This data makes the case for a structural response.
The central argument
Not a trust problem.
A design problem.
The clinical research industry has spent a decade treating diversity as a communications challenge. This data shows it is a structural one. The two most cited barriers to clinical trial participation are too many hospital visits (628 responses) and clinical trials not designed for people like the respondent (451 responses).
Neither can be fixed with better messaging. Both require redesigning how clinical trials are built and run. Remote participation. Flexible scheduling. Community organisations as infrastructure, not afterthought.
628
Named too many
visits as barrier
visits as barrier
451
Said trials not
designed for them
designed for them
476
Said community
voice would change it
voice would change it
01 · The Scale of Exclusion
The numbers
don't lie.
They rarely lie.
These are not statistics about a distant population. They are the lived realities of 1,204 people who took the time to tell us, in their own words, what it means to navigate a healthcare system not built with them in mind.
Scroll to see each finding.
82%
have felt their health concerns were dismissed or not taken seriously by a healthcare professional. This is the dominant experience of this community, and the root cause beneath everything that follows.
76%
avoided or delayed seeking healthcare in the past 12 months. Communities that have disconnected from primary care are communities that will never be referred into clinical trials. The pipeline does not exist for them.
45%
were told about a clinical trial by a healthcare professional and did not fully understand what they were being told. Graduate-educated respondents were the most confused group. This is a language problem, not a literacy problem.
36%
are currently enrolled in a clinical trial. Even among communities facing structural exclusion, the appetite for clinical research participation is real. The demand exists. The infrastructure does not.
Eight in ten people in this community have been made to feel that their health does not count.
Equity Engine Community Survey · 1,204 respondents · United Kingdom
02 · The geography of avoidance
This is not evenly distributed.
Healthcare avoidance is not a national average. It is a postcode. The variation between UK regions reveals where the system is failing communities most acutely, and where intervention is most urgent.
The East of England anomaly
94% of respondents in the East of England avoided or delayed healthcare in the past 12 months. This is 18 percentage points above the national average of 76%, and by far the highest rate of any region. The East of England is not where most clinical research infrastructure sits. It is where the gap is widest.
London: the outlier in the other direction
London's avoidance rate is 56%, 20 points below the national average. Greater access to healthcare infrastructure, higher concentration of community organisations, and more visible representation in research are all likely factors. London's relative advantage should not mask what is happening elsewhere.
03 · Listening to the Data
What exclusion sounds like.
What is data sonification?
We have turned community health data into sound. Each community group plays as a musical note, the higher the pitch, the higher their clinical trial participation rate. The note plays for as long as their participation lasts. Then comes silence, and that silence is the gap. The people not in the clinical trial. The voices not in the data. Click any row to hear a single community, or press Play to hear all seven in sequence.
Clinical trial participation rate
Felt not taken seriously
Avoided care
Click any row to play · barriers affect sound quality
CommunitySurvey metricsIn clinical trials
Data note: These participation rates reflect our engaged community sample, not the general UK population. Equity Engine specifically reaches underserved communities, so rates are higher than general benchmarks. The variation between groups and the barriers they name are the primary signal. Full population-weighted analysis published with the complete report.
04 · Trust
Trust is not absent.
It is polarised.
Respondents rated six types of organisation on whether they act in the community's best interest for health research. Average scores look moderate. The distribution tells the real story: almost every institution divides communities sharply. The exception is university researchers, where most people are simply indifferent, they do not know enough to trust or distrust them. That is its own finding.
Community organisations score highest. University researchers, who run most clinical trials, score lowest. The institutions with the most power have the least trust. This is a relationship problem, and the data makes clear who needs to build it.
05 · Barriers and enablers
The same wall.
The same door.
628 people named too many hospital visits as their top barrier to clinical trial participation. 476 people named a trusted community voice as the top enabler. These are not separate problems with separate solutions. They are the same constraint, physical access and institutional trust, seen from two sides. The community has already named the fix. The question is whether the sector will act on it.
What stops people
What would change that
99% of people who said research is designed for them
still cited barriers to clinical trial participation.
Feeling seen and being able to participate are not the same thing.
still cited barriers to clinical trial participation.
Feeling seen and being able to participate are not the same thing.
The designed-for-me paradox · Equity Engine Community Survey
06 · What Communities Say
747 people.
Seven truths.
We asked: "What is the one thing you wish clinical researchers understood about your community?" 747 people answered substantively. Seven themes dominate. These are their words, not ours.
83%
Would be more likely to participate if the trial was designed with their community.
45% said they would be significantly more likely. 38% said somewhat more likely. This is not a soft preference — it is a quantified behaviour-change signal. Designing research with communities is not a moral argument. It is a participation strategy with a measurable return.
What comes next
Your story
is not yet
written.
This is Vol. 1. 1,204 voices are the start. We are building toward a dataset powerful enough to put community evidence at the centre of how clinical trials are designed, funded, and reported across the UK.
Every voice changes what the data says. Every voice changes who gets heard.