Be prepared…care.data is coming
By Nicola Hayward
I’m writing this week’s blog in between fielding phone calls from irate patients about NHS England’s controversial (in my opinion) care.data programme. Those of you in the ‘biz’ will know exactly what I’m talking about, but just in case you don’t……..this is the plan for Big Brother to extract coded data from GP surgery clinical computer systems. Such data will include NHS numbers, dates of birth, postcodes, and gender together with referral data linking the GP data with other care settings “in order to analyse patient care across pathways”. ‘Pathways’ is one of those words that we use now in the NHS……along with ‘signposting’ and ‘fast-tracking’ – it’s a posh way of saying we’re going to get you to the right person in the right place at the right time………mmm, thought we should be doing that anyway??!!!!
Anyhoo, we in GP land were told about this in October (or thereabouts) and amongst the blurb was a statement that patients would be informed about this system within the next 8 weeks and then they could make a decision as to whether they wanted to opt out of the programme and thus prevent their data being lifted. We were advised to put as much information as we could on our surgery website (check)……create a patient newsletter (check)………… and wait for the onslaught of the disgruntled masses……(check)
So, this week (not 8 weeks from October for those of you who can count) patients locally received a leaflet……..hidden in junk mail (along with the pizza delivery guys) which briefed them on the programme and what it involved, what they needed to know etc.
Well, call me a cynic, but a junk mail leaflet drop is hardly the best way to inform patients about something so important as this. Big Brother will argue that this lifting of patient data will improve patient care, “….by ensuring that timely and accurate data are made available to NHS commissioners and providers so that they can better design integrated services for patients…….”………..yeah, right, whatever!!
In layman’s terms, that means that fingers crossed, God willing, and a fair wind, data being collected across the country will enable Big Brother to determine that money goes to the right places in the right way – and to further explain this, the issues we have in Gloucestershire would be very different from the issues in say Hackney, Manchester, Glasgow or the Isle of Wight!! (I haven’t picked you out for any specific reason if you’re reading from those areas by the way!!) so it’s a good thing that money is spent appropriately and we get the resources we need in whatever county we’re based.
The problem with this whole scheme is that people are suspicious…..and rightly so. We know that mailing lists for insurance companies and double glazing salesman are generated and bought on the open market. We are also aware that large supermarket chains will flood us with discount vouchers for products we have previously bought – but woe betide if you let someone use your store loyalty card to buy a packet of condoms……….your next vouchers will include all sorts of wonderful offers!!
The latest information to come out from NHS England states quite categorically that information is not going to be sold to the highest bidder, insurance companies will not be phoning you up based on clinical data that was lifted……….but………whilst I’m happy for my data to be shared (two babies, a gynae op years ago and a UTI – nothing worth selling there chaps!)……there are those patients out there who would rather NOT have their personal, confidential medical history shared, anonymised, pseudonymised, encrypted or otherwise.
So, as an NHS patient, you need to be aware that this programme is going to take place. You need to read whatever material you can get your hands on….and you need to make a decision as to whether you’d be happy for bits of your medical record to be shared. It’s your choice………….all I’ll say is make an informed decision……………and in the meanwhile, I am going to lie down in a darkened room with a bottle of Gin (that’s MY choice!!)
