Why I'm open sourcing myself

1. You already have more information about yourself than you think

Blood results. Clinic letters. Scan reports. Genetic tests. Prescription charts. Wearable data. Notes from every appointment you've ever had.

Most of it is scattered across hospital portals, printouts, email inboxes and the drawer in the kitchen. Every time you see someone new, you start again.

I wanted to show what happens when you pull it all together and make it easy to share. With your oncologist, your nurses, a second opinion, a trial team. Even the gym, when they hand you a form asking about your medical history.

They all just need information about you. It's yours. You can have it ready.

You don't have to publish yours on the internet. Getting it into one place and onto one page is the win.

2. The selfish one

I have stage 4 cancer. My care team are brilliant, but they're a small circle.

The more people who can see my profile, the more chance someone outside that circle knows something that could help: a trial, a test, a combination, a person I should be talking to.

If more people did this, that would be true for all of us.

It's already working

Since I started publishing everything, I've ended up talking to a genetic specialist in Australia, vaccine specialists in the UK and Argentina, and found tools I'd never have come across. Here's what's happened so far.

What I publish, and what I don't

I publish hard data. Bloods, scan findings, summaries of clinic letters, genetics, the chemo I'm on and the doses, the protocol I follow, and my own tracking.

I don't publish opinions, mine or anyone else's, dressed up as facts. And I take out my NHS number, hospital numbers, address and the names of the clinicians who treat me.

Isn't that risky?

Yes, a bit. I've given up some privacy. For me, the upside of someone finding something I've missed massively outweighs it. That's my call, for my situation, and I'm not telling anyone else to make the same one.

If you want to do your own

1. Ask for your records. Letters, blood results and scan reports are yours. The NHS App, your hospital portal or a polite email to the secretaries will get you most of them.
2. Put them in one place. I use a Google Doc and NotebookLM. A folder works too.
3. Stick to facts. Numbers, dates, findings, decisions. Leave the feelings for the journal.
4. Make a one-page summary. Something like my card. It's what people actually read.
5. Keep it current. I update mine every two weeks, in time with my chemo cycle.

What inspired it

Paul Conyngham is a Sydney-based tech entrepreneur. When his rescue dog Rosie was diagnosed with advanced mast cell cancer, he used his data science background and AI to analyse her tumour DNA, worked with the UNSW Ramaciotti Centre for Genomics, and designed a personalised mRNA vaccine targeting her mutations. Rosie's tumours shrank significantly.

"It raises the question. If we can do this for a dog, why aren't we rolling this out to all humans with cancer?"
Martin Smith, Director, UNSW Ramaciotti Centre for Genomics

Different species. Same principle. Open data gives people the chance to help.