What next for care.data?

Plans to share NHS data have been delayed. Graham Clews reports on how they may now evolve.

The care.data programme has been delayed for consideration of serious concerns about patients' privacy
The care.data programme has been delayed for consideration of serious concerns about patients' privacy

When the BMA and the RCGP raised concerns so strongly and publicly about the introduction of the care.data programme, it seemed inevitable that NHS England would have to take action.

Civil liberties and privacy campaigners had long warned that the creation of a national database of information pulled from GP records was so significant that patients must be made fully aware of its implications, and all concerns must be addressed.

NHS England had agreed to leaflet every household in the country, following pressure from the Information Commissioner, but at least one survey showed that fewer than a third of householders had seen the Better information means better care leaflet.

Almost a quarter of local Healthwatch groups had raised concerns about NHS England's attempts to explain the scheme, and charities warned that little attempt had been made to inform vulnerable people of what would be happening with their medical records.

Properly informed

When GPC chairman Dr Chaand Nagpaul eventually called for evidence to show that the public had been 'properly informed' about the scheme before care.data began uploading data, and the RCGP then demanded that the programme should be delayed, NHS England did just that, until the autumn.

It will now hold talks with the BMA, the RCGP, Healthwatch and other bodies to 'develop additional steps to promote awareness with patients and the public'.

An NHS England spokeswoman would not be drawn on whether the talks would herald substantive changes to the programme.

But the RCGP has called on NHS England to use the six-month moratorium to address six assurances the college had sought before care.data was put on hold.

These include clarification of the purposes for which pseudonymised, but potentially identifiable data, can be used, and a guarantee that the data will not be sold outside the NHS for commercial use.

It also requested a clear outline of robust controls to manage the disclosure of identifiable and potentially identifiable data, and confirmation that data will not be sold for profit.

How care.data could change
  • Echoing BMA concerns when the summary care record scheme began under the previous government, campaigners have called for a switch to an 'opt-in' model for extraction of patient data, not the current 'opt-out' format.
  • The BMA and the RCGP have called for improved safeguards to prevent NHS information being released inappropriately, including clear rules on acceptable uses for pseudonymised but potentially identifiable NHS information.
  • The RCGP has called for a guarantee that NHS data will not be sold outside the health service for commercial use.

RCGP honorary secretary Professor Nigel Mathers said: 'The public's trust in the way in which the NHS treats their personal data cannot be overvalued and it is paramount that we do everything possible to protect and uphold it.'

Within days of the delay being announced, a row emerged over the release of data by the Health and Social Care Information Centre's (HSCIC) predecessor, the NHS Information Centre, amid claims it had been used to drive up insurance premiums.

The claim was strongly denied by the Institute and Faculty of Actuaries, which had published research based on data from 47m patients. The institute said it had made findings publicly available to help actuaries improve the accuracy of critical illness cover.

But the HSCIC is reported to believe its predecessor should have applied 'greater scrutiny' when releasing the information - and it is just this sort of concern that critics of care.data want to see resolved before the scheme proceeds.

Safeguards

Dr Nagpaul made clear his support for the concept of care.data, but said the six-month delay would allow the BMA to work with NHS England to ensure that safeguards are in place and the public is properly informed, before uploads of information from GP practices begin.

A spokeswoman for Healthwatch England said the organisation was in the process of setting up meetings with senior NHS England figures and it was yet to hear whether its views would be sought on substantive arrangements for care.data, or whether NHS England was only looking to improve its communications around the programme.

Data privacy

Pressure groups have hailed the moratorium as a victory, but are stressing that their campaigning on medical data privacy will continue.

Civil liberties group Big Brother Watch, which was among those campaigning for care.data to be altered or delayed, called on NHS England to write to patients individually, including an opt-out form, explaining the scheme and allowing people to make an informed choice about their medical records.

'In future, it should be the norm that these kinds of changes are on an opt-in basis,' a spokesman said.

'We expect such a situation would mean a far more thorough effort from NHS England to keep the public informed, while also fulfilling the principle of giving patients control of their medical records.'

Another of the six assurances sought by the RCGP is a national TV, radio and online campaign telling people of their right to opt out.

NHS England's reliance on one leaflet to inform patients has attracted widespread criticism, and a Freedom of Information answer from NHS England showed that it failed to include in the leaflet drop any households that had chosen not to receive junk mail. This wiped out about 200,000 addresses at a stroke.

The future of the care.data programme, and past mistakes, were due to come under parliamentary scrutiny as GP went to press.

The House of Commons Health Select Committee was due to hear evidence on care.data from ministers, senior GPs and NHS officials.

A spokeswoman for NHS England said: 'We have been working with organisations including the BMA and the RCGP throughout and this engagement will continue.

'We are going to use the six-month extension of the public awareness campaign to listen to a wide range of views.'

NHS England also said it would be talking to the BMA and the RCGP over the forthcoming weeks about how it can involve volunteer GP practices to test the quality of data that would be extracted to the care.data programme.

NHS England's care.data information leaflet

Patient data will be used:

  • To find more effective ways of preventing, treating and managing illnesses.
  • To guide commissioning decisions.
  • To provide early warnings on public health risks.
  • To inform the public about NHS care.
  • To inform decisions about use of NHS resources.

What safeguards are in place?

  • NHS England says it will use 'the minimum amount of information we need to help us improve patient care'.
  • It says a 'thorough process' has been developed to decide who can access the information.
  • NHS England has pledged to 'make sure that the way we use information is in line with the law, national guidance and best practice, and will never identify an individual person'.

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