Patients and Carers are the only constant in care fragmentation, so give them a tool
Chapter 1. One place to store and search all your health data
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. Everyone is frustrated with poor health data interoperability but others don't seem to take seriously what I did: even full interoperability won't solve health data silos—because up to 80% of health outcomes depend on real-world context that lives outside appointments and outside EHRs.
2020
In 2020, while supporting chronically ill and neurodivergent patients as a patient advocate—and being both a patient and a quantified self enthusiast 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. I couldn't cope with the fact that I'd need to spend hours to manually review thousands of pages of health data across portals, apps, drives and scans/pictures — only to discover how much was never recorded. With a small team of developers working on my non-profit project, we created a simple tool for me and fellow patient advocates to upload health data and perform smart (vector) multilingual search.
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 or the solutions weren't popular enough yet. 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.
2021
Chapter 2. The Patient is the main link between the clinics
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.
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 trusts only hold a fraction of my health journey, even within the NHS itself.
Chapter 3. Health Data Avatar (HDA) — patient-first platform to manage and understand all your health information in one place - reclaim your data ownership
2024
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
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.
2025
Health Data Avatar is built on a simple idea: your health information should be easy to manage and always under your control. HDA brings all your medical data together in one secure, encrypted space so you can capture, organise, and share information on your own terms. With HDA, you can upload PDFs, scans, images, digital files, and plain language health notes using a single entry point. There is no need to switch between different portals or apps. Everything you add is organised automatically through our AI, which creates a clear and searchable health tree. You can tag entries, edit logs, and leave comments whenever something needs clarification or correction. HDA also allows you to interact directly with your health history. You can chat with your records, summarise cases in any language, identify gaps, missing or conflicting information. Layered privacy controls help you decide how much to reveal when sharing details with a third party, including clinicians or caregivers. Privacy is central to everything we do. Your data is encrypted in transit and at rest, never sold or repurposed, and protected under GDPR and SOC-2 standards. HDA is independent of hospitals, insurers, countries, and Big Tech, ensuring that your Health Data Avatar stays with you wherever you go. This independence, however, doesn't exclude integration with clinics and healthcare systems - but only on users' terms.
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.
Even while bootstrapped, we have built a platform that already delivers:
– Encryption and secure, privacy-first storage
– Reliable data extraction from complex, real-world formats (including those that LLMs alone do not parse reliably)
- Personal Identifiable Information (PII) detection and selective redaction
– Secure, structured sharing with fine-grained access controls
– FHIR and markdown (best for LLMs) exports to ensure true data portability
– Multilingual translation, summarisation, RAG and reverse-RAG
– Constrained AI data lookup with explicit rules about what qualifies as a valid source within a user’s own records
– An MCP-based infrastructure layer enabling controlled, auditable sharing of specific data subsets with other tools and agents
By making health data clean, structured, multilingual, and AI-ready, while keeping ownership and control with the patient, we unlock what existing health data platforms do not: a foundation that works across borders, systems, and technologies, decreasing duplicate tests and allowing privacy preserving drug interaction checks without compromising ethics or trust. Our secure, structured, AI- and FHIR-ready shares as well as multilingual embedding already bridge the gap that none of the health data platforms in the world bridge, and we have only just begun. With greater recognition and support, our team can accelerate a shift healthcare urgently needs: from fragmented data to coherent health histories, and from system-centric infrastructure to fitting real complex health stories.
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.
