“The government takes the view that transparency is vital to healthy public services. It has created a new Statistics Commission to improve the quality of information collected (and to end arguments about “fiddling” figures).” [Tim Kelsey, New Statesman, 2001] [1]
In a time of continuing cuts to budgets across the public sector the members of the public have every right and good sense to question, how is public money spent and what is its justification.[#NHS2billion]
For the flagship data extraction care.data programme, it is therefore all the more surprising, that for the short and long term there is [2]:
a) no public proof of how much the programme is costing,
b) little around measurable tangible and intangible benefits,
c) or how the risks have been evaluated.
The Woolly Mammoth in the Room
The care.data programme has been running under its ‘toxic’ [3] brand in a similar form now, for two years.
When asked directly on costs at the Health Select Committee last month, the answer was, at best, woolly.
“Q655 Rosie Cooper: While I appreciate that, can you give us any rough figures? What would a CCG be contributing to this?
Tim Kelsey: I cannot answer that question, but we will very rapidly come back to you with the CCGs’ own estimates of the costs of the programme and how much of that cost is being met by the programme.” [Hansard January 2015][4]
The department appears very unwilling to make public and transparent its plans, risks and costs. I’ve been asking for them since October 2014, in a freedom of information request. [5]
They are still not open. Very much longer will look decidedly shady.
A few limited and heavily redacted parts were released [2] in poor quality .pdf files in Jan 2015, and don’t meet my request as there’s nothing from April-October 2014, and many missing files:
- The business case is missing.
- The risk register is missing.
- There are lots of redactions.
- Future costings are missing. [They haven’t been worked out yet, planned for “May-June 2015” acc. to [p.7] highlight report] [6]
Transparent?
As I followed the minutes and materials released over the last 18 months this was a monstrous gap [7], so I have asked for it before.[8]
I had imagined there was reticence in making it public.
I had imagined, the numbers may be vague.
I hadn’t imagined it just didn’t exist at all.
For the programme whose watchword is transparency, this is more than a little surprising. A plan had to be drafted to drive transparency, after the FOI was received [which I believe fails section 22 refusal criteria, as the decision to publish was made after the FOI]
– here’s the plan [9] – where are the outcomes?
Is the claim that without care.data the NHS will fail, [10] no more than a myth?
Why does the business case and cost/risk analysis matter? What is the future of our data ownership?
Because history has a habit of repeating itself and there is a terrible track record in NHS IT which the public cannot afford [22] to allow to repeat, ever again.
The mentality that these unaccountable monster programmes are allowed to grow unchecked, must die out.
Of the NPfIT, Mr Bacon MP said: “This saga is one of the worst and most expensive contracting fiascos in the history of the public sector.”
Last autumn, a new case history [23] examined its rollout, including why local IT systems fail to deliver patient joined up digital records.
Yet, even today, as we hear that IT is critical to the digital delivery of NHS care and we must all be able to access our own health records, we read that tech funds are being cut.
Where is common sense and cohesion of their business planning?
These Big Data programmes do not stand alone, but interact with all sorts of other programmes, policies, and ideas on what will be done and what is possible in future for long term data purposes.
The public is not privvy to that to be able to scrutinise , criticise and positively contribute to plans. That seems short-sighted.
And what of previous data-based ventures? Take as a case study the Dr. Foster IC Joint Venture [NAO, February 2007] [24]
“The Information Centre spent £2.5 million on legal and consultancy advice in developing the joint venture, and setting up the Information Centre. The Information Centre contends that £855,000 of the money paid to KPMG was associated with costs for setting up the Information Centre which included business planning.
However, they could not provide an explicit breakdown of these costs […] We therefore calculate that the total cost to the taxpayer of a 50 per cent share is between £15.4 million and £16.3 million.”
“The Information Centre paid £12 million in cash for a 50 per cent share of the joint venture (see Figure 2 overleaf).
The UK plc made a sizeable investment here. The UK state invested UK taxes in this firm – so what’s the current business case for using data? How transparent are our current state assets and risks?
Being a shareholder in one half, it is fair to ask who are we now sharing the investment risk with or was this part sold soon after?[25] Was that investment a long-term one, or always meant to be so short term and are there any implications for the future of HSCIC?
In 2011 this report [26] another investment group, Bamboo holdings [related to other investor companies], wanted but did not succeed in selling its Dr. Foster stock at an acceptable price, said the portfolio introduction due in their words, to ‘poor performance’. [Annual investor review from 2013 [p.5]
So what risks does the market see as a whole which are not made available to the public which affect how data is used and shared?
What of the other parts of Dr. Foster Research and so on, we, the state, went on to buy or sell later? It appears complex.
Is the commercial benefit to be made for private companies, seen as part of the big picture benefit to the UK plc or where does state investment and expectation for economic growth fit in?
What assessment has been made of the app market in the NHS and how patient data is expected in future to be held by the individual, released by personal choice to providers through phones?
Is a state infrastructure being built which in the surprisingly short term, may see few healthy people who store their data in it or will we see bias to exclude those with the money and technology to opt out who prefer to keep their health data in a handheld device?
What is the government plan for the future of the HSCIC and our data it manages? The provider Northgate was just bought by European private equity firm Cinven, which now manages a huge swathe of UK’s data [32] and HSCIC brought others in-house. [33]
“Its software and services are used by over 400 UK local authorities, all UK police forces, social housing providers in the UK and internationally, and NHS hospitals. Its IT projects support the sharing of information for criminal intelligence and investigations across UK police forces and the management of health screening records in the UK and in Ireland.”
All the easier to manage – or to manage to sell off?
Is the business plan future-proofed to survive the new age of health data management?
One of the problems with business cases for programmes which drag on and get swamped down in delays, is they become obsolete.
The one year mark has now passed in the announced care.data pause, announced on February 18th 2014.
The letter from Mr.Kelsey on April 14th 2014, said they would use the six months to listen and act on the view of patients, public, GPs and stakeholders.
Many of the open questions remain without any reply at all, never mind public answers to solutions to open issues.
The spine proposal by medConfidential [30] is one of the best and clearest proposals I have found with practical solutions to the failed opt out 9Nu4 for example.
Will these be addressed, or will NHS England answer the Data Guardian report and 27 questions [31] from December?
Is care.data arthritic or going quietly extinct? The last public information made available, is that it is rolling on in the background towards the pathfinders.
“By when will NHS England commit to respect the 700,000 objections to secondary data sharing already logged but not enacted?” [updated ref June 6th 2015]
How is the business plan kept up to date as the market moves on?
Is Big Data in the NHS too big to survive or has the programme learned to adapt and changed?
As Peter Mills asked a year ago, “Is the Government going to take this, as a live issue, into the next general election? Or will it (like the National Programme for IT) continue piecemeal, albeit without the toxic ‘care.data’ banner? “
The care.data programme board transparency agenda in Nov 2014 : “The care.data programme has yet to routinely publish agendas, minutes, highlight reports and finalised papers which arise from the care.data Programme Board.
“This may lead to external stakeholders and members of the public having a lack of confidence in the transparency of the programme.”
We all recognise the problem, but where’s the solution?
Where’s the cost, benefit and risk analysis?
Dear NHS England. One of your business cases is missing.
Why has the public not seen it?
Why are you making it hard to hunt down?
Why has transparency been gagged?
Like Dippy, the care.data business case belongs in the public domain, not hidden in a back room.
Like the NHS, the care.data full risk & planning files belong to us all.
Or is the truth that, like Nessie, despite wild claims, they may not actually exist?
***
more detail:
[1] New Statesman article, Tim Kelsey, 2001
[2]http://www.england.nhs.uk/ourwork/tsd/care-data/prog-board/ care.data programme board webpage
[3] http://www.infosecurity-magazine.com/news/nhs-caredata-pr-fiasco-continues/
[6] http://www.england.nhs.uk/wp-content/uploads/2015/02/cd-prog-brd-highlt-rep-15-12-14.pdf
[8] https://jenpersson.com/care-data-postings-summary/
[9] http://www.england.nhs.uk/wp-content/uploads/2015/02/propsl-transpncy-pub-cd-papers.pdf
[11] http://nuffieldbioethics.org/blog/2014/care-data-whats-in-a-dot-and-whats/
[12] http://www.theinformationdaily.com/2014/03/26/business-scents-boom-in-personal-information-economy
[13] http://www.hscic.gov.uk/article/3887/HSCIC-publishes-strategy-for-2013-2015
[14] https://jenpersson.com/flagship-care-data-2-commercial-practice/
[15] http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/141015-0001.htm
[16] http://www.publications.parliament.uk/pa/ld201415/ldhansrd/text/141015-0001.htm
[17] http://www.legislation.gov.uk/ukpga/2014/23/pdfs/ukpga_20140023_en.pdf
[18] https://jenpersson.com/hear-evil-evil-speak-evil/
[19] https://www.whatdotheyknow.com/request/nhs_patient_data_sharing_with_us
[20] http://www.hscic.gov.uk/hesdatadictionary
[21] http://www.bbc.co.uk/news/uk-politics-24130684
[22] http://www.nao.org.uk/wp-content/uploads/2007/02/0607151.pdf
[23] http://www.cl.cam.ac.uk/~rja14/Papers/npfit-mpp-2014-case-history.pdf
[24] http://www.nao.org.uk/wp-content/uploads/2007/02/0607151.pdf
[25] http://www.healthpolicyinsight.com/?q=node/688
[26]http://www.albion-ventures.co.uk/ourfunds/pdf%20bamboo/Bamboo%20IOM%20signed%20interims%2030611.pdf
[27] http://www.v3.co.uk/v3-uk/news/2370877/nhs-needs-patients-digital-data-to-survive-warns-health-chief
[28 ]http://uk.emc.com/campaign/global/NHS-Healthcare-Report-2014/index.htm
[29 ] http://uk.emc.com/campaign/global/NHS-Healthcare-Report-2014/index.htm
[30] https://medconfidential.org/wp-content/uploads/2015/01/2015-01-29-A-short-proposal.pdf
[31] https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/389219/IIGOP_care.data.pdf
[32] http://www.privateequitywire.co.uk/2014/12/23/215235/cinven-acquire-northgate-public-services
[33] http://www.ehi.co.uk/news/EHI/9886/hscic-starts-sus-and-care-id-transfer