The Download: Selling patient data

It is hard to overstate how excited the government is about doing wonderful things with NHS data, including selling access to the life science and tech industry.

The second life sciences sector deal described the NHS as a “pivotal delivery partner” in building a strong life sciences industry, primarily because of the patient data it holds. Health ministers and NHS officials have marvelled at the breadth and depth of NHS patient data. One NHS England briefing called it a “tremendous resource for the future” that will be “the envy of every other country”. The words “gold mine” have been used.

Arguments for and against selling (or giving away) NHS patient data are complex and fraught. Is it exploiting confidential patient records for private profits or a public resource that, with the proper safeguards, can be used to save lives?

Irrespective of how one answers that question, the NHS right now is collecting and sharing more patient data than ever before and that will only accelerate. To avoid the scandals of the past, a frank conversation with the public about industry access to this data, and what the NHS should expect in return, is needed.

Surveying

First off, is the NHS really sitting on a data gold mine?

In aggregate, being a universal health service means the NHS does know an awful lot about its population’s health. But in practice this information is deeply fragmented, locked away in isolated IT systems or paper records. It is often difficult for a hospital to have a single view of a patient’s health, let alone spit out quality data that researchers can use to test a new app or develop a new treatment.

Some patient data is aggregated nationally, mostly by NHS Digital, and shared with industry and academia. But there are big gaps, most notably in primary care, and much of it is messy and slow to collect. Past attempts to build a more useful national data set that might supercharge research and improve direct care have been spectacularly bungled (see Care.data).

Other countries also already have richer patient data sets for researchers (the US Department of Veterans Affairs, for example). So, the NHS has some catching up to do if it wants to exploit its theoretical advantages.

Mining

But the NHS is digging for data again.

In the centre, NHS Digital’s data services platform is replacing a hodgepodge of old systems as the landing pad for national patient data sets. Once there, the data is easier and faster to link, anonymise and share within the NHS and with researchers, both commercial and academic. NHS Digital is making changes to the collection of GP data that, according to one report, will benefit researchers “enormously”.

At the regional level, the local health and care records exemplars are meant to be doing the same. Each LHCRE will gather or link together individual patient’s information from different providers for local use (eg: direct care, planning) and to feed into the centre. To make this work, rules are being introduced to clean and standardise patient data nationally.

Senior NHS officials and the health and social care secretary have both insisted LHCREs will not be used to create a national patient “data lake” for researchers. At best, this is being technically cute. NHS Digital told suppliers in October last year that the LHCREs will feed data directly into its central platform. Both NHS England and life sector deals make it clear that patient data drawn from LHCREs will support research at a national level.

Selling

The conversation has even shifted from how NHS should control industry access to patient data, to how much it should be charging.

Technology companies, in particular, are increasingly striking deals with NHS trusts to access patient data to test or develop their products. The most infamous of these deals, between Royal Free London FT and Google Deepmind, was unlawful but also brought the trust questionable benefits (Google, on the other hand, plans to turn the resulting “streams” app into a multibillion pound global business).

The Department of Health and Social Care, worried the NHS is getting a poor return on its patient data, has now written a code for ensuring the NHS will cash in on any “upside” from such arrangement. This may come from straight selling data, preferential access to any new tech developed using that data, or from trusts creating joint ventures with tech companies to commercially exploit the data (and, of course, to improve health and care).

How willing industry will be to pay for better access to NHS patient data remains to be seen (some large high-quality patient datasets overseas are free to access). But DHSC is advising NHS organisations to create “commercial strategy” for sharing patient data now, to ensure the NHS gets a fair piece of any action.

Declaring your find

None of the above is secret but most of it will be news to the average patient on the street.

Even within the NHS, the data sharing drive is being pitched as a way of improving direct care (which it partly is), not supporting new industries. Senior NHS officials have told HSJ this is a deliberate strategy. Talk about non-controversial use case now, and this a pressing case for greater data sharing for direct care, and save the harder conversation, about sharing this “tremendous resource” with industry, for down the track.

But, as detailed above, the government is trying to do both now, and that has led to some confusion.

Last month, Digital Health reported that some local LCHRE leads had objected to demands that they feed patient data into the centre for secondary uses, claiming it wasn’t what they’d “signed up for”. If senior NHS IT managers are missing the fine print (or being misled), what hope does the public have?

The National Data Guardian Dame Fiona Caldicott says the NHS should have a “no surprises” policy on using patient’s health data, but surprises persist. Last month, she said the “case for data sharing still needs to be made to the public”.

“Dialogue with the public about data use has not grown at the same speed as the capacity of technology,” she said. “Where there is a gap between expectations and reality, anxiety may grow about the use of patient data to support innovation.”

Last time that gap opened up, it set health data sharing back years. That is a mistake the NHS can ill-afford to repeat.