Ashish Rishi — Inclusion Debt, Equity Engine & the Patients Trials Leave Out

Adam Walker:Ashish Rishi is founder and CEO of Unwritten Health, the Manchester-based patient experience data platform working to ensure life science's evidence reflects the people it's meant to serve.

Its Equity Engine — a 6,000-strong UK participant panel profiled across the social determinants of health, plus community partnerships and AI analysis — turns lived experience into submission-ready evidence.

His view is unsentimental:health inequity is as much an evidence and design problem as a moral one, and it can be re-engineered. He sits on the scientific advisory board of IHI-READI (REpresentative Clinical Research, Advancing Inclusivity in Europe), the Horizon Europe initiative building infrastructure for more representative research in Europe, and on the equity committee of the US Prader-Willi Syndrome Association.

Ashish Rishi:The mission really is just to make healthcare more inclusive. It's all driven from personal experience, personal story.

When I was 17 my dad was struggling with back pain, low energy levels, losing weight. He was going to the GP very often. After three years he essentially went to his GP and demanded — literally lost his rag — to get a referral.

He was finally diagnosed with prostate cancer and given six months to live. I was 18, doing my A levels. Me and my mum were taken into a room. English is my mum's fourth language and even though she's been in the country since 1977, the system still didn't make sense to her.

It was a two-minute conversation: "Your father has been diagnosed with terminal prostate cancer and he has six months left to live. Here's a flyer, read it, and we will get in touch to set up a follow-up conversation." We left the room numb, with no family network in the UK to speak to.

His health journey actually lasted six years. His last wish was to see me graduate — he passed away three months before my graduation. That's always stuck with me, and it made me want to do something in this industry to help people.

Ashish Rishi:I did my Master's in neuroscience. I consider myself a failed scientist — I worked in a lab for about three months and I was awful, so before I got sacked I resigned.

But there was an experience there that made me think about diversity and inclusion. At uni quite a lot of us were Brown, doing science, medicine, biomedical degrees. Where were they? They weren't in the lab.

So I fell into health communications, worked at agencies like Ogilvy in London, and my career thrived. I realised I'm not a scientist, I'm a creative and a problem solver. But dealing with key opinion leaders, patient groups and internal teams, there was still no representation, no diversity.

Ashish Rishi:At Ogilvy I was working on a prostate cancer publication strategy, and I realised the lead PI of the global phase three trial we were writing publications for was my dad's consultant.

That sent me down a spiral:I went to my dad's appointments and a clinical trial was never mentioned. When I looked at the inclusion and exclusion criteria there was nothing that would have excluded him — the only thing was that he was a younger man, and there were no age restrictions either way.

That drove me into the inclusivity problem in clinical trials. I tried to get my employers to tackle it, and it wasn't much good, so in 2015 I founded my own patient engagement agency.

Ashish Rishi:I set up the agency talking about diversity and inclusion and it was tumbleweed for years. Then the pandemic happened, and a month later George Floyd's death and Black Lives Matter. Every pharma company, every vendor was blacking out their social media. I thought: that's my opportunity to hold every one of them to account.

There's a lot of academic research that proves the thesis, but nothing applicable, nothing real world. So I set up a campaign called Demand Diversity, commissioning research off our own back into diversity and inclusion from a community and patient perspective rather than the clinical trial system perspective.

We focused on the UK and the US, on neurodivergent populations and LGBTQIA+ populations. We had evidence, proof, real-world case studies, ROI points — and we would still get shut down. "It's not a priority." That's the thing I couldn't crack, and that's what led to Unwritten Health. For me it's now about data, so I can influence policy.

Adam Walker:How are you influencing that policy through real world data? You've got a patient database of more than 6,000 patients — does it have different verticals of patient groups and underserved populations?

Ashish Rishi:We're working with community groups across the UK to onboard people onto the platform. They give us their social determinants of health data — using just the first three characters of the postcode to find where the pockets are around disease, ethnicity, age, income and more.

Once they're in the database we continuously engage with them, developing long-term longitudinal datasets on healthcare experience and disease experience. It's ethnographic research: embedding ourselves in people's lives so we understand everything. We're at six and a half thousand participants now and growing.

The platform is called Equity Engine. I work with South Asian health groups — gurdwaras, mosques, temples — and African and Caribbean family groups, churches and ministries in the UK. I get the hard discussions: "Why should we give you our data? How can we trust you?" That's on me to be as authentic as possible.

Ashish Rishi:I've coined this term, inclusion debt. At every stage you make it worse. It starts in early discovery: the science is great, but what is the unmet need from the perspective of the patients who'll take the medication? That voice isn't strong enough.

We build multi-billion pound programmes and product launches on focus groups of eight to ten patient experts — and they are experts. They're not the laypeople who don't know how to advocate for what they need. You should still do focus groups, but at scale.

Then protocol design and the number of protocol amendments. Then patient recruitment: money is thrown at it, sites are told to fill in feasibility questionnaires and say yes to everything, and vendors throw budget at social ads geared towards populations willing to share data on social media. Who gets lost? The minorities, the people who don't trust social media or healthcare.

Then market access, pricing and reimbursement: the value dossier only carries the narrative of one population. By then it's too late to change anything. That inclusion debt just compounds as the cycle goes on.

Adam Walker:Have we got a bigger problem in the UK with the NHS, the datasets, the regional variations? We've got millions of patient datasets, but none of it speaks to each other, does it?

Ashish Rishi:That's the biggest challenge right now. There's good work happening — Our Future Health, UK Biobank — but it's fragmented and quite cloak and dagger. Our Future Health are piloting how they share access, and in the NHS pilotitis is a thing; it goes on for years.

UK Biobank has had its own challenges, including the breach and the reporting since around asking patients to keep quiet, covered in the BMJ and national press. That affects trust, and it comes up when I meet community groups.

Social determinants of health data sits over there, health data sits over there, and they don't necessarily talk — let alone link to what clinical trial sponsors need. Even in the US, where it's easier to buy data, it still isn't robust enough.

Ashish Rishi:Patient groups often don't know how to reach underserved populations, and don't always understand what underserved means — for many it's just ethnic minorities. With neurodivergent people there's a lot of work to do: the way we present information, materials and websites isn't working.

During the pandemic a lot of the Muslim population would say to me, "We don't inject alcohol or pork gelatin into our body." Vaccines now are biologics — but nobody was doing that education.

Then parts of the Indian diaspora think about ayurvedic and homeopathic remedies, and it's all on WhatsApp. My mum still gets messages from family in India telling her to put turmeric in something. I believe in preventative measures, but we need to be more robust.

Underneath all of it is one thing: not wanting to go to the GP, because once they're there they expect to get dismissed. How many people have gone in with a bad knee and been told to lose weight? It's not helpful at all.

Ashish Rishi:AI has been very positive for us because we ring-fence our data — we're not using publicly available data, so we can synthesise our own much quicker. A client can ask a question of the data through a ChatGPT-style interface and get responses.

I was working on a prostate cancer recruitment strategy and uploaded the flyer to ask what people thought of it. The flyer showed a Black man in a polo shirt on a golf course, smiling with his wife.

The feedback came back:"I am never going golfing with my wife." "I've got prostate cancer, I'm not likely to be on the golf course." "If I am on the golf course, I'm not going to be smiling while I've got prostate cancer." That's the disingenuous design our platform can tackle.

We're also working with Lancaster University on modelling how AI can synthesise the data statistically and qualitatively without introducing bias and without hallucinating — plus where the data centres sit, because we're trying to hit net zero targets.

Ashish Rishi:I've got the pilots, the validation and my first set of clients. Now it's about investment and scaling. The aim is 10,000 people by the end of this year, 25,000 by the end of next year, then Germany, Spain, Italy and maybe Portugal, and eventually the US and global.

The model means it's not going to be a people-heavy business, but it will still have that human touch as well as the technology behind it, which is the way forward.

On visibility:our industry is quite closed, an echo chamber, and when someone challenges it, silence creeps in. But a couple of top-five pharma companies have approached me purely through my videos and content, so consistency works.

Adam Walker:More and more people identify as neurodivergent and are challenged by social situations, social cues, invasion of personal space. If you were to develop a neurodivergent-friendly clinical research unit, what would that look like?

Ashish Rishi:There's that sense of overwhelm. For a lot of people, just the idea of going into a hospital or seeing their GP brings anxiety, and it spirals. Even the waiting rooms can be overwhelming — the noise, the colours, the sounds, all the different people.

I worked on a project with the University of Huddersfield on what the ultimate high street of the future looks like, and I argued for a clinical trial unit on that high street with cultural sensitivity, safe spaces and prayer rooms. It never got off the ground, but there's something in it — one of those in many cities would be powerful.

Adam Walker:What is the one piece of advice you would give to your younger self?

Ashish Rishi:Don't be as angry as you are. I was fuelled by anger early in my career. It worked when I was younger, but then comes frustration and burnout — I burnt out quite quickly in my early 30s. Take it slower; it's a long journey but you'll get there.

Adam Walker:The top three qualities you value most when building a team?

Ashish Rishi:Honesty, passion and authenticity.

Adam Walker:Your favourite thing outside of work?

Ashish Rishi:I've become that guy — I'm a dog dad. My Brussels Griffon, Morpheus, is nibbling on my toes right now. He's probably the love of my life.

Adam Walker:Your number one golden rule in life and business?

Ashish Rishi:Authenticity. I'm never the polished guy. People expect a CEO to come in like a snake oil salesman and I just can't do that. I'll be myself — it's got me where I am.

Adam Walker:The best way to reach you?

Ashish Rishi:LinkedIn — search Ashish Rishi. I think I'm the only one with that name, and you'll see this beard as soon as you search.