Health Data Is Broken, And Better Solutions for Clinics Won’t Fix It

Health data fragmentation is costing people time, clarity, care and lives. Interoperability alone won’t solve it. Why health data fragmentation is the real problem, and why patients must be at the centre to centralise health data.

Health data is broken, and the cost for both patients and governments is huge

Health data is supposed to support care. Instead, it's one of the biggest barriers that costs patients and public healthcare money, time, clarity, continuity, nerves, trust and too often, health. Appointments start with missing information, tests are repeated unnecessarily, and symptoms are dismissed without context. Care decisions are made on partial histories. The dominant narrative says: “We just need better interoperability", and businesses across the world are trying to solve this problem, overloading doctors and nurses with new interfaces and wasting time and money, relying on systems to integrate.

Of course, interoperability matters, but it is not the fundamental issue and not the core solution, as the real problem is health data fragmentation. And fragmentation cannot be solved by healthcare providers, institutions, or vendors alone. Because the most important health data doesn’t live in systems. It lives with the person.

At HDA, we understand three key nuances that the mainstream agenda keeps missing:

1. Only patients and carers have 24/7 insight. No one else sees the full picture or has the motivation to keep it accurate and up to date.

Even with perfect data-sharing between hospitals, clinics, labs and insurers, critical health information is still missing. Electronic Health Records (EHRs) rarely capture real-life context that is crucial to shape at least 80% of the patient's outcomes. When did the symptoms actually appear, and how did they evolve? Was the patient compliant with their medication? How were they actually taking it? Did they self-adjust the dose? Are they self-medicating? Did the treatment work? What symptoms emerged in between appointments? Are they taking substances, and how do those substances interact with the medication? Side effects, symptom patterns, daily functioning, mental health context, lifestyle changes, wearable and app data, and early warning signs: all data that patients have but don't always save and can be quickly forgotten.

This, and much more, is real-world health data, and it exists outside institutional systems.

Interoperability connects systems to each other, but it does not connect systems to lived reality. This is why centralised personal health records or PHRs matter. Not as an add-on offered by each solution separately, but as core infrastructure.

2. Poor data leads to poor outcomes — even with great technology

AI, predictive analytics, and preventive health platforms are only as good as the data they rely on. Today, that data is often:

fragmented across providers

• outdated

• incomplete

• contradictory

• missing real-life context

This leads to:

• flawed risk predictions

• missed early signals

• inappropriate recommendations

• erosion of trust in digital health tools

  
  

Advanced technology built on broken foundations doesn’t produce better care; it produces confident errors. Fixing the foundation from fragments to usable health data is HDA's main mission. This requires health data management designed for people, not just systems.

3. B2B-first health data solutions miss what matters most: the patient

Most health data platforms are built B2B-first. Even if it's not obvious for the user (patient), they are optimised for providers, constrained by institutional workflows, shaped by billing and compliance needs or the need to maximise profit for businesses.

In reality, patients are often an afterthought. At the same time, those patients could be the missing link to solving interoperability faster.

This is why we built an independent solution for users: patients and carers. HDA isn’t about replacing clinicians or systems; it’s about enabling patients across the world to:

• Bridge gaps no system can

• Maintain continuity across life events

• Become active curators of their own health data and thus healthcare (with the latter being the reality anyway for too many, just with no convenient tools).

We believe that innovation in health tech should start with fixing the foundations. We believe health data fragmentation can only be solved:

🧬 With the person at the centre

🔐 In control of their own data

🌍 Able to share it on their terms, across systems, languages and borders