As a patient advocate, personal health data management is the biggest barrier for care

Every time I moved countries, I started from zero with my health story — I suddenly had no health past, years of health check ups and trends as well as documented risks were lost.

As a patient advocate across 10 years and 4 countries, and noticed that no matter the system, the issue was always fragmented, messy, and hard to understand health data we have no real control over.

To help one person, I’d need to have a long conversation and review hundreds of pages across portals, emails, apps, PDFs, and photos — only to realise how much was missing.

An independent accessible solution for patients to upload all their health data and securely store it and manage in one place to see the whole picture, chat to it, and plug it into different systems by patient's request sounds like a tool that should have existed ages ago! And those, who don't have many health issues would probably think what I thought in 2018: "you're just not searching well enough!" In 2019, I built a simple (internal) tool to drag and drop files, upload pictures and search through health data across titles in any languages, and this was already extremely popular among fellow patient advocates. Then I started researching, why a solution for patient and carers the way myself and the patients I know need doesn't exist (yes, still in 2026) As I've been building Health Data Avatar for 2 years — partly, I understand it's not just the unique nuances I understand, it also freaking slow and hard.

One of the reasons this doesn't exist

Most health data platforms are built for institutions (insurers, clinics, labs, governments) not for people. That's the reason why they aren't thinking about what's ideal for the patients and about the edge cases (patients travel, change providers, might struggle with the language etc). Even the best ones lock your data into a system or focus on a specific condition only adding more silos. Meanwhile, those who need them the most: cross-border or multi-provider chronic health patients, and longevity-focused users with an enormous amount of unstructured, inaccessible data – are left behind.

The mainstream industry narrative says, “We just need better interoperability.” So resources are poured into system-to-system integrations that overload clinicians and assume everything will eventually connect. While ONLY THE PATIENTS (and carers) have a 24/7 real insight into what's happening, have the biggest motivation to verify it and are the link between providers, countries and time.

80% of health outcomes depend on the information that lives with you.

– How your symptoms change each day

– Which meds you actually take (and when) and whether you take any substances

– How your body reacts after travel, stress, or sleep loss

– What no one believed or wrote down

Patients are the missing interoperability layer.

After years of my approach being rejected, we finally saw a positive market signal: OpenAI acquihired TorchHealth for $100M at the idea stage. Well, it's not available in EEA, the UK and Switzerland anyway (plus now we know our data contributes Pentagon), and no, they didn't end up creating what we created - an independent health data management ecosystem.

My hope for the future is still simple: your health information should be easy to access, manage and understand, and always under your control — wherever you live, no matter how complex, multilingual, or fragmented your records are. For this to be possible, the health data infrastructure that would save this must be ethical, patient-first, and independent of any single vendor or government, while integrating globally across languages and systems. The interface must be simple for the user, with all the heavy lifting happening under the hood.

Even while bootstrapped with only 2 of us building full-time (and I'm still seeing clients alongside this), we’ve built a multilingual health data pipeline ready to plug into health tools, GEN AI and EHRs

Since January 2026, Health Data Avatar offers:

• Encryption and secure storage for all your files and added health logs

• Data extraction (files parsing) including formats ChatGPT alone won’t reliably extract from, translation and summarisation + original file preview

• Secure structured sharing with fine-grained access controls - share all your health picture or only the pieces you choose

• Personal identifiable information detection and selective redaction, sanitised files export

  And so much more! I want to keep my story momentum. Check all our current features here

I've been hosting "tidy up your data" meet ups to request, find and upload health data. With the current amount of constant distraction, everyone needs body doubling.

Also, we have a health management chat to share the hospitals, providers, tools that worked for us, find a clinician thanks to friendly recommendations and p2p support (not medical advice: all clinicians on the chat are also fellow patients)

We've only been testing HDA with our primary audience: multiple chronic health conditions patients, carers, digital nomads with focus on health, and health-aware users who just moved countries.

We're launching on Product Hunt on Wednesday (aaah, scary!), and I'd love to connect with the people here who are thinking about this:

Have you ever had a medical situation abroad or after moving (or even just switching GP practices) where your records were missing, incomplete, or impossible to access while you needed them urgently?

If you actually owned your health data the way you own your bank account data, what's the first thing you'd do with it?

What are your favourite tools for health data management? Do they lack anything for your needs?

For those in digital health, patient advocacy, or building in the AI + health space , I'm especially curious where you see the biggest gaps right now between what patients are promised and what they actually get.

Drop your thoughts and questions below — I'll read every comment and will respond to any questions.