Whenever I hear of somebody refer to ‘Big Data’ and the NHS, it’s an immediate ‘facepalm’.
When I saw a blogpost shared by a Twitter pal shared yesterday, a blogpost written by Sir Jeremy Heywood, my first instinct was completely to ignore it.
I am, though, mindful of the Civil Service’s prolonged campaign to measure wellbeing; this first came across my RADAR from Lord O’Donnell.
I have a disclaimer to make: I am not a corporate shill.
Having done certain training, I am aware of the hard sell of ‘Big Data’ as the next big thing by the multi-national corporates. “Big data” seem to have been given a somewhat pedestal status, like 3-D printers.
We are often told how intelligent technology rather than being a costly burden to the NHS could bring great benefits and outcomes for the NHS.
Undoubtedly, a lot of democratic deficit damage was done by the Health and Social Care Act (2012). At close to 500 pages, it was very easy to say it was too incomprehensible to be analysed. I always felt the Act, for anyone trained in commercial and corporate law, was in fact relatively straightforward.
The Health and Social Care Act (2012), often called “the Lansley Act”, has three essential prongs of attack: one to introduce a competitive market through legislation for a heavy penalty for non-one-commissioning not going out to tender, a beefed up regulator for the market (Monitor), and some detail about insolvency regimens (but not all).
In this, it was completely consistent with work by Carol Propper; and other noises from ‘independent think tanks’, such as the King’s Fund.
However, the acceleration of this Act through parliament by two parties which are extremely sympathetic to the free movement of multinational capital has done long-lasting damage.
I think there are problems with having data so transparent. When I did my Masters of Law practice-focused dissertation in cloud computing law, I unearthed a huge literature on data security and data confidentiality/sharing.
When I later did my pre-solicitor training, I discovered the regulatory requirements on the balance between confidentiality and disclosure to be complicated.
When I later came to revise ‘Duties of a Doctor’ (2013), the General Medical Council’s code of conduct, I found there to be equally onerous considerations.
I am aware of the problems in my own field of work; about concerns that NHS patients will be scared from going to see their GP for fear of being diagnosed, incorrectly, with ‘incipient dementia’ because of a GP’s practice wanting to meet a financial target.
Or a junior Doctor not wishing to share his alcoholism with his own Doctor, for fear that this information will end up with the clinical regulator, with a super-un-sympathetic sanction. This is a subject close to my heart, as you will well know.
Indeed, if you’ve been following me on Twitter, you’ll know that a year after erasure by the GMC (in 2006 to be endorsed by the High Court in 2007), I spent a year sitting in a pub with no family or job. I later was then admitted to the Royal Free Hospital having had a cardiac arrest and epileptic seizure, then to spend six weeks in a coma.
I am now knowledgeable about what both the legal and medical regulators expect me to do, as I am regulated by them.
The next Government will be wishing to implement ‘whole person care’. While I think some of Jeremy Heywood’s claims are a tad hyperbolic (for example saying unleashing data will lead to wellbeing improvements), and while I don’t feel he currently ‘owns’ the data (the data are confidential property of the people who provide the data), there are clinically-driven merits to information sharing.
From now on, I will avoid the word ‘data’ and use the word ‘information’. But ‘information’ does not necessarily mean ‘knowledge'; and it certainly doesn’t necessarily mean ‘wisdom’.
One scenario is somebody prescribed Viagra for erectile dysfunction in the morning. He then has sex with his partner in early evening, and has Angina. He has longstanding ischaemic heart disease, and then takes his GTN spray. His blood pressure then goes through the floor, and he collapses. He then is blue lighted into his local emergency room.
Do not take this anecdote as ‘medical advice’ or any such like where I could get into regulatory trouble please.
Viagra is a class of drug which can interact with the GTN spray to send blood pressure through the floor. If this information were known to an admitting Doctor in the emergency room, this would be useful.
I can come up with countless examples.
A lady from a care home turns up in hospital at 4am. An admitting Doctor wishes to prescribe a heavy-duty blood pressure lowering drug, but notes she has had a series of falls. This is found out by looking at her electronic medical record. She indeed has a history of osteoporosis; weak bones could mean that she might fracture a bone if she had another fall.
But I could come up with countless examples. And I won’t.
I am not a corporate shill. I understand completely the concerns about the loopholes in current legislation meaning that ‘big data’ could go walkies to drug companies, though this is vehemently denied.
I am also aware of ‘cloud failures’ – the Playstation one for some reason springs to my mind.
That’s another reason to keep an eye on ‘My NHS’.
But we do need, I feel, to take a deep breath and to discuss this calmly.
