NHS England wants to reduce the cost for researchers to access expanded healthcare datasets from around £30,000 to £1.
The commissioning board’s chief data officer Geraint Lewis told EHI that it wants to reduce barriers to accessing the new datasets being created by the care.data programme.
NHS England has launched a public consultation today on plans to regularly extract an expanded Hospital Episode Statistics dataset, including things like prescriptions and nursing observations.
This will feed into care.data, which broadly has five pipes of information colour-coded to reflect the risk to a person’s confidentiality of the data flow; one green; two amber; and two red.
The two amber streams of information are pseudonymised and can only be given to accredited users. One set will be for the “NHS family” such as commissioners, providers and the Care Quality Commission.
The other is for use by public health services, researchers and think tanks and currently comes with a hefty price tag.
“We think £20,000-£30,000 is a barrier we would like to remove if possible. We want more people analysing this data because we see the benefits it leads to,” Lewis said.
The plan is to reduce the cost to just £1.
One “exciting” way in which a red-coded ‘pipeline’ of information will be used is allowing a person to download their own aggregated data.
They could then choose to share it with caregivers or with clinicians in another country if they are on holiday.
Lewis said patients could also choose to send their hospital data to their favourite charity for analysis.
He explained that it is similar to the ‘blue button’ idea being explored by NHS England for patients to download provider records such as from their GP practice.
However, the board is undecided about whether to call downloading of aggregated care.data information by patients the ‘blue button’ as well as this may cause confusion.
Blue Button, together with the slogan ‘Download my Data’, was introduced by the US Veterans Association beginning 2010.
© 2013 EHealth Media.
The Public Consultation..Mary Hawking 19 weeks ago
Seems to be aimed entirely at staff working in hospitals - not general public.
Most of the questions would, I think, be hard to answer accurately - and assume that the increase in the enhanced HES data set is simply a matter of implementation: no space for detail or acknowlegement that hospital medical records are created by many people with different professions and training; no recognition that EPRs are records created to care for individual patients, not created to provide data to extract.
But I will agree there was a box at the end for any further comments about the consultation!
LinksLyn from eHealth Insider 19 weeks ago
Looks like we put all the links in the first story we ran on the consultation - but it's here, on the NHS England site: http://http://www.england.nhs.uk/2013/07/22/consultation-hosp-data/
Finally found the actual consultation!Mary Hawking 19 weeks ago
You have to download the document to find a way to the on-line consultation
and it does look as though it is aimed at/confined to NHS workers!
Still, probably a useful link to NHS England's consultations which have been difficult to locate in the past!
Click on the "Find Consultations" to find some really interesting Consultations - which had escaped my notice!
Do it soon - some are closing at the beginning of August...
So who is currently making the money?mrtablet 19 weeks ago
'NHS England wants to reduce the cost for researchers to access expanded healthcare datasets from around 30,000'
This begs at least two questions. Who currently sells these data at that price? Where did the data at that price come from given care.data is a new resource?
Is it a private company or companies, an existing QUANGO etc? What happens to their businesses when HSCIC undercuts them?
scrapping the previous business model?Mary Hawking 19 weeks ago
My understanding was that the business case for GPES was that it should be self-funding.
NHS England wants to distribute all the HSCIC data - including data extracted via GPES? such as care.data - for minimal if any cost to the recipient.
Obvious question, if GPES cannot continue to charge for services, will it have to cease offering them?
Or will the cost just be transferred to the tax-payer?
If so, as a taxpayer, I might object to subsidising commercial or research use of my data - especially if I had not given consent for its use.
Great Business ModelBeenThere 19 weeks ago
Let's examine this business model.
On the expense side... HSCIC has hundreds of senior well paid people, project and software teams, solution architects, consultants, statisticians, business managers etc all working on numerous well-funded and resourced projects. These projects are, cumulatively, designed to enable the NHS to claim its national data holding back from the GP practices and hospital trusts that thought they owned it; many of those now need various inducements and sweeteners (extract fees etc - more expense) to surrender that data back, so that the NHS can play the "Big data" game (this year's IT industry manna from heaven).
On the income side, they're going to make data extracts available for 1 a time. That's good value for money for the taxpayer! Unless, this is just a headline grabbing ruse that EHI have fallen for .... nah coudn't be! Unthinkable.
We don't just make this stuff up...Jon Hoeksma 19 weeks ago
If Geraint Lewis insists that NHS England is going to make data available for £1 then that is news. Does beg some further analysis and questions though -- as indicated by the comments above. Like where is the business model? All very well saying 'UK Plc' and 'the greatest clincical trails opportunity in the world' -- but those are sound bites not a coherant business case.
And HSCIC does cost a not insignificant £200m a year just to run.
Does the NHS really need to subsidise the life sciences industry research without a clearer benefits case? It does after all already pay quite a lot of money for their rather expensive drugs.
How will the NHS and the patients it serves benefit? Will is be through cheaper drugs? How much cheaper and who will measure? Will it be better drugs? Faster adoption? More personalised medicine? Greater availability of orphan drugs?
Or is the argument based on attracting, or just retaining, research jobs to the UK?
All may be perfectly reasonable arguments if sufficiently robust to withstand scrutiny and critical questioning. The impression at the moment, perhaps unfairly, is that it is all a bit breathless and wide-eyed.
What is the business case NHS England is presenting to Treasury and the Cabinet Office for sharing NHS Big Data for free? If it is the crown jewel of the English health service why is it being given away for free?
Big Data - Big Questions.BeenThere 19 weeks ago
Not seriously implying that EHI was duped, but yes, you definitely should be getting answers to the pertinent questions you raise - and also the whole raft of questions related to the apparent "mission creep" that could seem to be involved.
HSCIC's agenda in this area is to claw back ownership of data back to the centre of the NHS, with as little alienation of the BMA and others as possible. That is a laudable aim, but its a battle that should be fought in the open not by effectively buying off those who currently think they own the data with taxpayers money (GPES extracts, QoF payments and many other initiatives all tend to this approach).
There also needs to be a national consultation with me, you and all NHS users about how, and for what, they use that data. That's a discussion they want to avoid, but it needs to happen.
£260m tech fund approved http://t.co/lzllSY7Jgr via @EHealthInsider #NHS #IT
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