Liverpool Care Pathway - Threshing The Data

We are transparent. Of course, we are transparent. But we are only as transparent as we want you to see.



This is the care.data/Programme Board – Main Session/Paper 03 –

This records the transparency agenda. The document is titled: Proposal on Transparency and Publication of care.data Programme Board Papers.

The care.data programme has yet to routinely publish agendas, minutes, highlight reports and finalised papers which arise from the care.data Programme Board

Date considered by Programme Board:
17 November 2014
14 January 2015

So, are they just gagging to tell us, or have they been gagged?

And who’s paying for all this?

In Hansard for Wednesday 21 January 2015 is recorded -

Q654   Rosie Cooper: So patients in CCGs will be contributing roughly how much? Tim Kelsey: GP practices have existing legal obligations, as we have discussed, to do certain types of fair processing. For example, we are not subsidising them to speak to their patients. We are subsidising aspects of this in order to test it. We are contributing to or paying for the cost of letters to go to each patient and the evaluation that surrounds that. We are also paying for other points of evaluation which we have agreed with the CCGs. 

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. 

 Q656   Chair: I have been asked to clarify something. The three are Blackburn with Darwen, West Hampshire and all of Leeds. Tim Kelsey: Yes. There are seven CCGs in four geographic areas, so it is the three CCGs in Leeds; it is Blackburn with Darwen, West Hampshire and Somerset. 

Q657   Chair: Which of these three pathfinder areas are the ones where so far you have 80 practices signed up? Tim Kelsey: They are in the West Hampshire, Somerset and Blackburn with Darwen areas. Leeds is developing some proposals which it wants to test with its GPs first, so it has not yet started the recruitment process. 

Q658   Valerie Vaz: I am a bit confused. You are running a pilot but you do not know what the costs are. Tim Kelsey: I know what the costs of the central programme are. I don’t know what the costs are—

Evidence is still being heard at the Commons Select Committee –

Inquiry status: oral evidence in progress

The Committee originally decided to take evidence on issues connected with the proposed care.data database which is intended to link patient data from GPs with records of hospital treatment. 

Following the evidence taken on 25 February, the Committee has decided to look at the issue of the handling of patient data more generally, under the current arrangements for disclosure and those that were in place under NHS Information Centre (the predecessor to the Health and Social Care Information Centre).

The Health and Social Care Information Centre (HSCIC) was established on April 1 2013 and superceded the NHS Information Centre (NHS IC). All is set and in place for Mr. Lamb’s single government department for health and social care, joining budgets at a national level and which he wishes to oversee.

The HSCIC is tasked to collect, disseminate and anonymise (where necessary*) data obtained through the Care.data initiative.

* Where data that we release are not fully anonymised and there is a legal basis to share outside of the HSCIC, there must be a clear data agreement with the organisation receiving the data to say what they can and cannot do with that information.

PSN (Public Service Network) is here –

With most major departments and local authorities connected and health and police communities preparing to join soon, the public services network (PSN) platform is here now.

PSN was set up in 2008, funded and managed within the Cabinet Office.

The Public Service Network ( PSN) moved to the Government Digital Service (GDS) on April 6^th last year.

GDS is coming under scrutiny as the General Election in May looms large. Questions around data protection and ‘snooping’ and privacy and security are being asked.

According to Computer Weekly Editor's Blog, the main political parties are in general agreement...

Reassuringly, there was much agreement between the three. On further support for the burgeoning tech startup sector; on expanding the work of the Government Digital Service (GDS) and supporting local authorities in their digital plans; and on the need for reforms around data protection and privacy - all three parties concurred. 

Is it reassuring when the parties agree, or is it a cause for concern? The tentacles of digital government are trawling wide. Is this a 'mostly harmless' Deep Thought or a Multivac in the making?

The concerns continue...

Mail Online reported in October -

Health officials are to go ahead with a controversial plan to harvest the personal data of millions of NHS patients despite widespread concerns.

A pilot scheme involving 265 GP surgeries and 1.7million patients will see confidential medical information put on a giant computer database, it emerged last night.

Bosses at NHS England insist that over the past six months they have ‘listened carefully’ to the concerns of doctors and patients, and put in place safeguards to prevent data falling into the wrong hands.

But experts say the safeguards remain unclear and point out that the NHS has an abysmal reputation for losing patients’ medical data.

Also in October, ehi News confirmed the sites for the Dot Data Pilots -

The programme will be rolled out in participating GP practices in the CCG areas of Leeds North, West and South and East, Somerset, West Hampshire and Blackburn with Darwen.

The care.data programme will extract data sets from different organisations, starting with GP practices, and link them to an expanded set of Hospital Episode Statistics within the 'safe haven' of the Health and Social Care Information Centre.

And Mail Online added -

The Independent Information Governance Oversight Panel (IIGOP) will monitor pathfinder practices trialling care.data.

Phil Booth, of patient group Med Confidential, told the Daily Mail he feared data could become available outside the NHS.

"The basis of the programme is unchanged - identifiable medical information will be extracted from every man, women and child in England," he told the paper.

"This data will be centralised and made available in various forms to an open-ended array of organisations and companies for ill-defined purposes.

"It's all very well to make promises but patients must be able to trust those promises are true. NHS England cannot fudge what it says to doctors and patients, or it risks another crisis of confidence."

While Graeme Burton reported in Computing -

The proposals were put back following vociferous objections from privacy campaigners and GPs. They argued that the plans were unnecessary and undermined the confidential patient-doctor relationship. The plans for anonymisation of the data, meanwhile, were criticised for the ease with which they could be de-anonymised.

Phil Booth, head of the campaign group Med Confidential, told the Daily Mail that nothing had changed with the programme: "The basis of the programme is unchanged - identifiable medical information will be extracted from the GP record of every man, woman and child in England.

"This data will be centralised and made available in various forms to an open-ended array of organisations and companies for ill-defined purposes.

Phil Booth urged caution...

By contrast, at the Computer Weekly debate on government digital policies, Liberal Democrat MP, Julian Huppert, is reported as saying that:

“The economic benefits of making data open is that you make more money than if you retained it.” –

The debate was about GDS.

PSN, now incorporated into GDS, is a network of networks which allows public sector organisations to connect with each other avoiding the duplication of past discrete networks that didn’t connect with one another. Some 600 public sector organisations are being or have been incorporated onto the network.

What did Mr. Huppert mean by that...? Could this be construed as selling data on for what Phil Booth described as 'ill-defined purposes'?

The Care.data Pilots are moving ahead to their Pathfinder stage.

The CQC (Care Quality Commission) will also access GP records without patient consent under its new practice inspection regime.

CQC inspections teams - including lay members - will be able to review medical records as part of quality assessments without permission, but will allow them to be anonymised beforehand, apparently.

The CQC sits on the NIB (National Information Board).

See -

Liverpool Care Pathway - Fracking The Data

The NIB seeks to 'exploit the digital information revolution'.

Are there too many conflicts of interest here?

There is a danger that, in being persuaded that all this is pretty innocuous, we shall become inoculated to accept surrender of personal data as an everyday matter and of absolutely no consequence.

A further concern: Outsourcing company, Atos, has been charged with collection of data...

- Atos

The General Practice Extraction Service (GPES) is a centrally managed primary care data extraction service that will be capable of obtaining information from GP practices across England for specific and approved purposes whilst ensuring patient confidentiality and privacy.

Together with the Calculating Quality Reporting Service (CQRS), GPES will replace and enhance the service currently provided by the Quality Analysis Management System (QMAS). The new systems are required in order to provide the proposed NHS Commissioning Board with a more flexible service in order to deliver current and emerging outcomes data (and any related payments) for GP practices and Clinical Commissioning Groups; these include the Quality and Outcomes Framework (QOF) and the proposed Commissioning Outcomes Framework (COF). The resulting service will also have the functionality to support other national or local payment services devised by national or local commissioning arrangements.

What does GPES do?

GPES will provide the data for all nationally sponsored initiatives that require data from GP clinical systems. In addition it will support and enable the Health & Social Care Information Centre’s (HSCIC) role as the single body authorised to conduct national data collections, as required by the Health and Social Care Act 2012.

Atos is managing the extraction of personal data from GP records. This is despite concerns over its handling of disability assessments.

The data must be collected, managed and transmitted to the HSCIC bastion or outpost (Accredited Safe Haven). How safe, how secure is the pathway to the ASH?

How well Atos will manage the proliferation of software systems across GP surgeries and hospitals, using different fields and coded formats that may or may not match up to stored data, is a question also worth asking.

What do recorded outcomes tell? Do records only reflect the perception of the recorder? Does data only tell the story of the storyteller?

Did everyone who died on the LCP die a good death? Did they die before their time because they had been 'diagnosed' as dying? A medical holocaust has proceeded but it has gone unrecorded and those stories which have been told have been dismissed as anecdotal.

What gain may be got from GP patient records and Hospital Episode Statistics? What sense may be made from such a trawl of outcomes?

What is recorded is not necessarily the holy word of God writ in stone.

Further reading -

Liverpool Care Pathway - It Cast Its Shadow Long 

Liverpool Care Pathway - AC/DC

Liverpool Care Pathway - Data Is Power 

Liverpool Care Pathway - Be Not Disarmed By The Caring Smile

Liverpool Care Pathway - A Data Bonanza