One in three patients faces care disruption due to data issues. There are countless solutions worldwide addressing data interoperability—for clinicians, insurers, and healthcare providers. But even full interoperability won't solve all the issues—because up to 80% of health outcomes depend on real-world context that lives outside appointments and outside EHRs.
In 2020, while supporting chronically ill and neurodivergent patients as an activist—and being both a patient myself and, later, a clinician juggling health data across four countries and languages—I built a simple tool to centralise health data across providers, formats, and systems. With a small team of developers working on my non-profit project, we enabled multilingual search and cross-format integration.
I couldn't find a single place to bring all my health data together and actually make use of it—and I assumed I just wasn't looking hard enough. I couldn't believe no one had yet challenged the fact that you effectively become a person with no medical past when you travel or relocate. Or that time spent as an international student—or even travelling for care—must remain a permanent gap in your medical record. Or that people are still risking dangerous medication overlaps when prescribed treatments in a third country, often feeling they have to hide it or won't mention it unless their GP explicitly asks.
When I moved to the UK in 2021, I was even more shocked to discover that the NHS app can't see my full picture—and that some trusts only hold a fraction of my health journey, even within the NHS itself.
I thought: surely someone is tackling this, and the right solution will emerge eventually.
Since arriving in the UK, I began proper market research and openly shared the platform vision and roadmap within my academic and clinical network. I focused on data ownership, making the full health picture accessible and easy to understand, enabling multilingual use with no jurisdiction or provider lock-in, supporting carers, offering clinicians a new way to understand a patient's full story, and building toward mindful, opt-in data sharing and monetisation—with patients at the centre.
To my surprise, many people weren't that excited. Some said no one would pay for a health solution while the NHS app is free
Even though it doesn't address the problems I've described and serves a very different purpose. Others said no one would trust a platform with their health data. I still believe that people will value their privacy and their data more—once they're shown how and what to look for.
Along the way, I also met tremendous support from both patients and clinicians. In January 2024, the project finally got a name: Health Data Avatar. And in September 2024, when I met Hex Miller-Bakewell, HDA entered its active MVP-building stage.
Hex: I'd been living with my own complex health issues for 20 years by then, with a health history so long that clinicians wouldn't have time to cover it during appointments. I'd moved to the UK as a child and it had left a dangerous gap when my recorded allergies didn't travel with me. When I met Maria I'd already begun my transition from academic computer science into healthtech, and her vision inspired me to pivot everything towards HDA.
Together with early users, supporters, forward-thinking clinicians, health solutions, and future collaborators, we're establishing a new global standard for personal health data ownership—structured, searchable, and fully managed by the person it's about.
One day, very soon, a person walking into their GP's office with a relevant summary will be met with curiosity and respect—not dismissal. And patients will finally be able to focus on gathering their full health story, and taking care of their health, rather than fighting to be heard.
