26 Mar 2019
Professor Ben Bridgewater – “Who Wants To Be A Millionaire?” and healthcare data
I imagined last night I was appearing on “Who Wants To Be A Millionaire”. I was through to the £500K question and had used my 50:50. The question was ‘is it illegal to drink and drive?’ with options ‘yes’ or ‘no’ left on the table
I wasn’t sure it was a very good question; did it mean drinking alcohol or orange juice? Was it about driving a car on the open road or a Super-Mario cart in my living room? So I asked the audience, who answered 95% ‘yes’.
I phoned a friend who told me he lost his licence for drink driving back in the 80s, so definitely ‘yes’. So I gave my final answer – ‘yes’ – congratulations you have won £500k. Would you like to stick or play for £1M.
In for a penny, in for a pound – let’s play. So the million pound question is ‘who owns healthcare data in the NHS?’ and the options are:
A) The patient,
B) The hospital/GP practice
C) The Secretary of State for Health and Social Care
D) The Crown.
This is tricky. I know a little bit about this from my days publishing surgical outcomes, but that was 10 years or so ago. I know it is not completely straightforward. So I ask the audience and fortunately this comprises healthcare workers, managers and data science academics (well that is my world) and the results come back – 65% say ‘the patient’ with answers for the others distributed about equally.
But I am still not convinced. Phone a friend? It just so happens my friend in this scenario is a leading experts on all things legal and data. He answers the phone and we have 30 seconds from when I start to read the question. Tricky he says. Like the question for £500K it is not a good question. Like the drink drive limit for alcohol the law is quite clear and lawyers agree on it for the most part, but there is some uncertainty and judgement around the edges.
The legal framework about data has not changed since my cardiac surgery days and as I get a quick summary things come flooding back: there are database rights, copyright, confidentiality rights and contract rights. Citizens have rights about how the data is stored and used, but no rights of ownership in this context.
Database rights and copyright
A database is defined as ‘a collection of independent works, data or other materials which are arranged in a systematic or methodical way and are individually accessible by electronic or other means’ and investment in databases is protected by database rights and copyright.
Database rights give protection if there has been substantial investment in obtaining, verifying or presenting the contents of databases. The creator of the database is classed as the first owner and of interest, database rights last for 15 years only.
Copyright applies to databases in the same way as it applies to literary works – they can receive copyright protection if ‘by reason of the selection or arrangement of the contents of the database, is the author’s own intellectual creation.’ Copyright in a database lasts for 70 years from the end of the calendar year in which the author of the database dies.
Data in databases, which is not publicly available, is also covered by the general UK law of confidentiality. And finally, in addition to copyright, database rights and rights of confidence rights, it is possible to impose obligations and confer rights relating to that data by contracts i.e. agreements between the parties involved in using the data.
The value of data
So why am I thinking about this? Well, they say that ‘data is the new oil’ and there is talk about how to make better use of our data assets in the NHS for patient and system benefit. There has been much debate and discussion about this for many years but very little activity.
When I looked in to this around cardiac surgery national clinical audit data in a previous role, we were satisfied that what we were doing was legal, but we stopped short of any initiatives to generate financial gain from the data for any parties, as we put it into the ‘too difficult box.’ And in essence the opinions I am giving here are in no way new, and have been well articulated previously.
But things are getting more complex now. The national Life Sciences Sector Deal, in support of the UK Industrial Strategy, has NHS population data and economic development at its core and health innovation will be at the heart of a number of regional local industrial strategies. Data and AI will be key to driving better outcomes for citizens and economic development and in general, the NHS will not be developing this on its own.
Increasingly, public cloud service providers will deliver the infrastructure which unlocks value from the data and the engineering to deliver value will be provided by cloud service provider partners – and they will all legitimately expect a slice of the pie as they have invested significantly in the capabilities which allow the value from the data to be unlocked by data transformation. To derive value in the new world we need to start asking the right questions, which is not ‘who owns the data?’ but what contracts need to be in place to allow us to deliver value.
So back to my dream about who wants to be a millionaire – I opt to use my 50:50, hoping to be left with either A) the patient and B) the hospital/GPs or C) the Secretary of State and D) the Crown. But I am left with B and C to choose between. I opt for the C) the Secretary of State.
The presenter asks ‘Is that your final answer?’ – and I decide it’s best not to risk it and take my £500k after all.