Electronic Care Data - the saga continues

The Care Data protests have forced NHS England rather unapologetically to delay the collection of data from GPs until the autumn The NHS England website http://www.england.nhs.uk/2014/02/19/response-info-share/ states:

To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will:

• Begin collecting data from GP surgeries in the Autumn, instead of April, to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to;

• Work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop additional practical steps to promote awareness with patients and the public, and ensure information is accessible and reaches all sections of the community, including people with disabilities;

• Look into further measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways in which the information will be used to benefit NHS patients

The gathering protests also led to the current Health Select Committee inquiry which met yesterday (25thFeb) to get the background. It will get some written evidence and then hold at least one more session to look at proposals for improving the system.

There are several version of why the postponement took place, one being that if the policy was successfully challenged in the courts it would be GPs who would be held liable for permitting the data to be collected rather than NHS England.
GP reaction has varied from trying to opt out all their patients (resulting in threats - late withdrawn - to suspend the GP), some actively contacting patients to tell them about opting out, and others making it pretty difficult to opt out.

It's worth stating that this is a really important issue and the potential value for patient care of the database has led many of those involved to ignore some of the difficulties about setting it up. For a sensitive discussion by Ben Goldacre (and various comments)

There are two issues: one about care data; and one about the arrogance, evasion and apparent incompetence of some types of senior NHS management.

1) Care Data:
Stones are now being rolled back revealing a lot of thoughtless and possibly murky practice. This includes the failure of the new Health and Social Care Information Centre to start this process without having developed and consulted on a code of practice as required by the 2012 Act; the possibility until assurances given this week that even if people opted out, some data would have been extracted; the failure of NHS England to communicate with properly with GPs, let alone the public; and last year's decision of the NHS Information Centre which preceded the new organisation to give the contract for extracting data from GPs to ATOS. It is quite incredible that NHS information managers could have given ATOS the contract to extract data even before pseudonymisation, however fast they were going to transfer it to the 'safe haven' of the HSCIC. If, as was said yesterday, it is technically difficult to psuedonymise the data before or when extracted, then the contract should not have been given to an organisation which has a clear conflict of interest. No way is this in the interests of patients as required by law. The managers also appeared unable to give the Select Committee any firm assurances that the DWP would not be able to access this personal medical data. Both of these factors might well influence a decision to opt out unless further protection is built in.

At least with the Select Committee's involvement, revised plans for care data collection will be opened to public scrutiny and to direct challenge by organisations like Medical Confidential.

All this is a gift to the right wing press like the Telegraph and the Mail which can refer to the NHS thought police. The Telegraph secured an added scoop by revealing (under a misleading headline) that hospital care data for millions of patients was sold (at cost) to representatives of insurance companies who were able to match it up with credit rating information from Experian and use it to raise premiums. What's more the Tories are claiming first that patients were never given the chance by the previous government to opt out from the centralisation of this data (true but the significance of the data is different) and secondly that this was only possible under the previous regime and it cannot happen under the safeguards of the Health and Social Care Act 2012 (something challenged by Medical Confidential and not convincingly defended by the minister and NHS witnesses yesterday).

2) NHS England and the Secretary of State.
Although the Secretary of State remains formally accountable under the 2012, it was clear that it was NHS England on to which the ordure was being shovelled. As one Committee Member pointed out, the Ministerial witness, Dr Dan Poulter, was pretty silent and not able to answer matters of detail.

Evidence is emerging that some of the national organisations set up under the Act are not doing too well. For instance the staff survey of Public Health England reveals very low morale and its head has failed to demonstrate his independence from government. Meanwhile NHS England is affected first by the departure of many skilled staff because of Lansley's reorganisation and cuts, secondly by the pressures being put on those who remain and are in an entirely new structure, and thirdly by an increased tendency, when under pressure, not just to take short cuts but to preserve some of the dictatorial trends of previous centralised NHS regimes. We have already complained about the lack of transparency and accessibility of the local NHS England office. The implementation of the Friends and Family Test is also proving dubious.

The senior managers at HSCIC(some with past private sector involvement) seem to have let their obsession with getting hold of data and their lack of principle in determining end users, get in the way of any understanding of how the public might perceive it. They ostensibly agree that a person's health records are their property but don't take on the implications. They also hide behind the relatively recent creation of the HSCIC to deny any responsibility for or even access to the decisions of the previous NHS Information Centre. As one MP commented, their actions have threatened the doctor patient relationship and discredited the NHS.

They are not going to go, unfortunately, at least for the time being; so we have to hope that some of the damage can be repaired by the processes now being put in place to improve some of the technical aspects of data collection, to tell people more clearly about what is involved, and to make it much simpler to opt out if people wish. The campaign needs to go on in order to exert maximum pressure for an acceptable system. If it cannot be made acceptable, it should not happen.