Russ Read-Barrow
Founder, FC:AI (fcancerwith.ai)
By open-sourcing my scans and using AI to advocate for myself, I now believe the biggest difference in digital health will come from awareness, openness – and patients who refuse to wait.
In 2021, I was diagnosed with bowel cancer at 39. Five years on, I’m at stage 4 — currently deemed incurable. Liver surgery. Bowel surgery. Lung ablation. Radiotherapy. Many rounds of chemo. Whirlwind is the polite word for it.
And there’s the data. Blood tests, scan reports, pathology and genomics. Specialists, systems and medical secretaries who probably don’t speak to each other. Even running Known & Cited (knownandcited.com), my AI search consultancy, I struggled to manage. I have no idea how many patients manage it, and I assume most don’t.
AI for symptom tracking
I started using AI to track symptoms for my oncologist, to make sense of the pots of tablets; to fill in the health questions on a gym form I’d otherwise click ‘none’ through. (I also wanted to design and sell socks, but still haven’t gotten around to them.)
Over the last year, during chemo, I built Fcancerwith.ai (FC:AI) to share the tools I was using in case they were useful to other patients. Lately, it’s become bigger: a way to share my information with specialists I’d never otherwise reach.
You must advocate for yourself, and AI can help you do that
Open sourcing my data
Test results, symptoms and my cancer’s genetic markers were all made public. Data sharing is risky, but very quickly, I started to see the upside.
A geneticist got in touch. A genealogist in Australia. A vaccine specialist in Argentina. People reviewing my case from angles not available to me in the NHS. Best case, a cure. Worst case, somebody clones me and takes over my life.
I don’t expect a miracle to come from all this. But when you’re a patient, you can’t count on your medical team to be on top of everything – they’ve got a lot to do. You must advocate for yourself, and AI can help you do that. Like most people, I’m not yet sure where AI can take us, but patients like me shouldn’t wait to find out.
Russ Read-Barrow is the founder of Known & Cited and K&C Vital – an AI search consultancy for the healthcare industry. He shares the AI tools he uses as a patient at fcancerwith.ai.
