Interoperability can only be solved by putting the patient at the centre — the unique HDA's perspective

Am I the Only One Frustrated About Interoperability?

If you work in healthcare, health tech, or live with a chronic condition, you’ve heard the same excuse for years: “We just need better interoperability.”

As a result, vast resources, including public funding, are spent on institutional integrations that overload clinicians with new interfaces and assume systems will eventually talk to each other. New standards, new integrations, new platforms in the hope it will finally make systems talk to each other. They started in the 00s, and yet, patients still carry pieces of paper between clinics, clinicians still work with partial histories and critical context is still missing. Health data remains fragmented, duplicated, and frequently wrong. Interoperability matters a lot, but it feels like the mainstream narrative keeps missing the main actor from the discussion. Without the patient's input, the picture will never be complete, and this habit could be (and arguably should be) formed.

Interoperability Is Not the Core Problem

The dominant narrative in healthcare says that interoperability is primarily a technical systems problem. If hospitals integrate with labs, if EHRs adopt the same standards and vendors align incentives, then, eventually, health data will flow.

In practice, this approach has led to:

• Vast public and private funding spent on institutional integrations

• New interfaces layered onto already overburdened clinical workflows

• Assumptions that “the system” will become complete if we wait long enough

Interoperability matters — but it is not the root cause.

The foundational problem is health data fragmentation.

Fragmentation Cannot Be Solved by Institutions Alone

Healthcare data is fragmented by design:

• Across providers, trusts, clinics, and countries

• Across formats: PDFs, scans, letters, portals, emails

• Across time: childhood records, legacy systems, lost histories

• Sometimes even across countries and languages (and some of these countries would never agree)

  
  

Crucially, the most important health data does not live in systems at all.

It lives with the person. Symptoms tracked at home, medication changes and self-medication that never made it into a chart, side effects, sleep patterns, life context, substance use, patterns, triggers, what's normal and what suddenly changed. Corrections to errors that were never verified. No hospital, vendor, or national system has full visibility of this reality without the patient's input.

The Missing Actor in Interoperability: The Patient

HDA's unique vision: the patient is the missing interoperability layer

Today, interoperability efforts largely treat the patient as a passive data subject.

Data flows about them, but rarely with them.

Clinical records are exchanged between institutions without asking:

• Is this correct?

• Is anything missing?

• Has anything changed?

• What context would actually matter here?

And this, with the ridiculously short amount of time we have to give the whole picture to a clinician.

As a result:

• Errors propagate across systems

• Important nuance is lost

• Patients are expected to notice mistakes, but aren't given any tools to fix them

  
  

Patient-Centred Interoperability Is the Only Scalable Model

At Health Data Avatar (HDA), our position is simple:

Interoperability can only be fixed if the patient is at the centre of it.

Because the patient is the only constant across:

• Providers

• Clinicians

• Countries

• Languages

• Lifetimes

Patients have the strongest motivation to keep their data accurate and they are the only entity that sees the full picture.

Interoperability should not start with institutions hoping systems will eventually align.

It should start with a patient-owned, structured health record that patients can partly or fully share, when they decide to.

Why Provider-First Interoperability Keeps Failing

Even the best institutional integrations are meant to struggle, simply because:

• Clinicians do not have time to reconcile fragmented data

• Systems optimise for billing, compliance, or throughput and the main beneficiary of the system defines the UI

• Data arrives without patient verification or annotation

• In reality, cross-border and multilingual care will likely be broken forever, as healthcare and wellbeing have never been more important than politics.

  
  

Adding more integrations does not fix fragmentation. It often just spreads it faster.

Without a patient-centred layer, interoperability becomes an expensive illusion.

How HDA Approaches Interoperability Differently

HDA was built on a different premise:

Health data should be verified, and enriched by patient, before it is shared or integrated.

That means:

• Data does not only flow from clinics and labs

• Patients should be able to confirm, correct, and contextualise records

• Personal notes, timelines, and lived experience are as important as lab tests and doctor's notes

• Records are structured in a way that systems — and AI — can reliably use

  
  

Instead of asking systems to assume the full picture, we let the person assemble it.

Only then does interoperability become meaningful.

Interoperability as an Outcome, Not a Starting Point

When health data is:

• Flowing to the patient's/carer's hands

• Structured across formats and languages

• Continuously updated with real-world context

Interoperability stops being a heroic engineering effort or the result of years of negotiations, but becomes a natural outcome.

Clinicians receive cleaner, more complete information, patients stop repeating their history at every appointment, and AI systems work with structured, constrained and sanitised data .

The Real Question We Should Be Asking

So maybe the question isn’t: “When do we achieve full interoperability?"

But rather: “Why are we still trying to solve fragmentation without the one person who actually holds the full story?”

Interoperability will not be fixed by another interface, standard, or integration alone.

It will be fixed when we finally accept that health data belongs with the patient, and the biggest effort should be focused there.