Launching on PH tomorrow — here are the gaps our cross-border health data ecosystem is closing

TLDR

What Health Data Avatar offers that others don't

• Unique sharing with fine-grained access controls

• Multilingual embedding (shout out to @Qwen3 )

• Multiple profiles writing access (essential for parents and other unpaid carers — in real life there are usually more carers for one person, but existing tools aren't built for this reality) — removed for the version we're currently launching for a smoother experience

• Removing identifiables before interacting with LLMs (or generally exposing your health records publicly)

• With all this, top security standards and privacy-first architecture (which doesn't make observability and many other things easy — on top of just thinking about privacy at every step and every decision, including frontend)

And now the problem statement :)

As a product not directly built for founders and builders (I'm sure there are loads of international folks here, though) — it's time to talk about why we bothered spending almost 2 years building something complex from scratch, bootstrapped, in the era of fast shipping.

D2C products aren't easy to raise for — you need to show traction and paying users. Starting to charge early before all the testing wasn't an option for us, but completely disrupting the way health data is managed is worth it.

First, most health data management platforms are just the patient-facing end of something created for providers. No wonder patients can't get much out of them. I could endlessly mention unnecessarily complex UI/UX, insufficient focus on user-generated data and data management rather than storage and exchange — and many other things...

Second, consumer apps are rarely built for health data management (even though a few have launched post-raise recently — well done them!). It's more passive data storage, focused on lab tests, appointments, analytics — which is very useful, just different.

Two recent ones that promise to parse your data accept only one language and are very restrictive.

There's also a great consumer product focused on lab tests that recently added multilingual functionality, but they're not there yet in terms of reliable outcomes — both in processing and search quality.

Data pipelines and multilingual embedding are extremely tough, and that's why they're not a great fit for a quick payoff.

Finally, big tech and governments/providers offering free solutions. I could endlessly point to leaks and scandals — here are just a few:

• NHS HSCIC — Patient records sold to insurers (2009–2012)

• PatientsLikeMe — Patient community data sold to a Chinese AI firm (2017)

• GoodRx — Prescription data sold to Facebook & Google (2023)

• BetterHelp — Mental health data sold to Facebook & Snapchat (2023)

• Google DeepMind / Royal Free NHS Trust — 1.6 million patients without consent

And finally: Palantir was paid £330 million by the NHS for a seven-year contract to deliver the NHS Federated Data Platform (FDP). Which doesn't have to bother everyone here, depending on your political views. To give context: Palantir's core business is providing big data and surveillance support to military, security, intelligence, and police agencies (they work extensively with ICE as well). Palantir has a rightful surveillance reputation (well, it's positioned as a surveillance business even on its own main site), and it really doesn't make sense to have a US surveillance provider handling health data in the UK. It bothers a lot of people in the UK, including myself and our team.

What bothers you most about how your personal health data is managed?

And does privacy and data ownership matter to you, or would you choose a free tool over both?