NHS Patient Data Could Generate Billions For UK, But Is It OK To Go Down That Road?

I don’t know about you, but I don’t like the idea of governments selling off patient healthcare data. Still, given the financial benefits it could generate, I’m not surprised that people are still kicking around the idea, which is what makes the following article to be so interesting.

In her recent piece, EY global health sciences and wellness and life science industry leader Pamela Spence speculates about the potential value of the health data assets held by the United Kingdom’s National Health Service.

As some readers may know, the NHS is the single largest integrated health provider in the world, and maintains patient records on the entire UK population from birth to death. That puts it in control of about 55 million patient records, along with 23 million episodic specialty care patient records and 100,000 DNA records for patients with cancer, rare diseases and infectious diseases.

According to Spence, those records would have a potential market value of several billion pounds if acquired by an outside commercial entity. They would be particularly likely to command such a price if the NHS was to link key datapoints together, she estimates. While EHR data is typically worth less than $120 (100 pounds) on the open market, the market value jumps to anywhere from roughly $1,200 to $6,000 per record (1,000 to 5,000 pounds) when combined with genomic and phenotypic data.

Meanwhile, a curated NHS dataset could currently generate as much as $6.1 billion (or 5 billion pounds) per year, along with potentially delivering about $5.6 billion (4.6 billion pounds) of value by fostering NHS savings, enhancing patient outcomes and providing other economic benefits to the UK as a whole, Spence concludes.

It all sounds great. I think I should buy shares in UK Inc. when it announces its IPO. There’s gold in that data!

But wait – let’s get off of that train of thought here. In reality, of course, the NHS is a government agency under tremendous pressure to protect patient privacy. In fact, it’s already faced intense scrutiny related to such issues more than once in recent years.

I’m not suggesting that EY is doing anything wrong by doing a speculative analysis of what the data might be worth and under what circumstances that might be possible.

That being said, her analysis raises more than a few red flags for me, and I don’t even live in the UK. In particular, I wasn’t thrilled that the article seems to come from an ethically value-neural place in making this analysis work, which seems odd. Yes, theoretical discussions are simply that, but the ideas involved can inform public policy going forward. Also, even if she doesn’t think the curation, re-use and resale of such data should be informed by ethical concerns, many others do, and I’d like to have seen her address these issues in some depth.

When all is said and done, it makes me nervous to imagine entities like the UK licking its chops at the prospect of generating this much income from the records. It’s way too easy to imagine the privacy and security, data management and ethics nightmares that could follow. Let’s hope Spence’s piece doesn’t give CMS any ideas.