Why Isn’t Access to Healthcare Data Free?

If you’ve ever tried to get hold of healthcare data — as a researcher, clinician, patient advocate, or just a curious human — you’ll know it’s definitely not like downloading a free app. There are forms, approvals, fees, committees, waiting times, and sometimes what feels like a small mountain of paperwork.

So why is it all so… not free?

Let’s break it down in a way that actually makes sense.

Healthcare data doesn’t organise itself — people do that

Behind every dataset you see, there are real people cleaning, checking, merging, deduplicating, and quality‑assuring the data.
Think of it like laundry: everyone creates the mess, but someone has to wash, fold, and sort it before it’s usable.

Data teams do things like:

• fix typos in hospital feeds
• link records across GP, hospital, pharmacy, cancer registry, etc.
• remove duplicates
• check and correct coding
• maintain secure servers

All of that costs time, money, software, and staff.

So while raw data might be cheap, high‑quality, research‑ready data is anything but.

Security doesn’t come for free

Healthcare data is some of the most sensitive information you can hold. If it leaks, it’s not just embarrassing — it can genuinely harm people.

Protecting it means investing in:

• secure servers
• encryption
• consent management
• monitoring systems
• access controls
• governance teams
• cybersecurity audits
• Trusted Research Environments (even if they’re annoying!)

Even a basic data security setup costs a fortune. So someone has to pay — and it’s usually built into data access fees or service charges.

Good governance takes time (and committees)

When you apply for healthcare data, your application often goes through:

• ethics boards
• information governance teams
• data controllers
• sometimes legal review

These people aren’t there to annoy you (even if it feels like it). They’re there to check:

• Should you have this data?
• Do you need this level of detail?
• Are you protecting patient privacy?
• Is your project actually safe and ethical?

That review process takes human time — and human time isn’t free.

Someone has to keep the lights on

National datasets sit on:

• high‑availability storage
• backup systems
• disaster recovery platforms
• cloud services
• secure data warehouses
• backup generators (yes, really)

These massive digital infrastructures are expensive to run. Data access fees often fund the day‑to‑day tech that keeps datasets online and available.

Free access would create chaos

Imagine if anyone could access healthcare data for free:

• companies could scrape everything
• low‑quality projects would explode
• governance teams would drown
• misuse or misinterpretation would skyrocket
• patient trust would collapse

Charging for access — or requiring applications — acts as a filter.
It ensures that the people using the data:

• have a real purpose
• understand the risks
• are accountable
• have some skin in the game

It’s not perfect, but it works better than opening the floodgates.

Healthcare systems are already underfunded

Sad truth: most health systems barely have enough money to run clinical services, let alone build perfect data platforms.

Data fees help pay for:

• analysts
• infrastructure
• software licences
• upgrades
• data linkage staff
• compliance

Without that funding, research‑quality data simply… wouldn’t exist.

So should data be free?

Honestly — sometimes, yes.
Especially when:

• it’s fully anonymised
• it’s used for public good
• it supports patient communities
• it’s beneficial for national planning
• the data quality doesn’t rely on extra labour

But in most cases, “free” would mean:

• lower quality
• worse security
• slower updates
• fewer staff
• more risk
• and ultimately, less trust

Healthcare data is valuable because people put resources into making it good.
And that work has a cost — even if we wish it didn’t.

Final thought

We tend to think of “data” as this magical digital by‑product that should automatically be open and free. But healthcare data isn’t just numbers — it’s the story of people’s lives, health, vulnerabilities, and experiences.

Protecting it properly and making it useful takes money, time, and expertise.

So the real question isn’t:
“Why isn’t healthcare data free?”

It’s:
“Who pays to make healthcare data safe, accurate, and useful?”

And right now, the answer is: everyone who needs to use it.