RCGP calls for reassurances before controversial data scheme goes ahead

Publication date: 18 February 2014

The RCGP has written to NHS England requesting a six-point plan of action to reassure patients before it goes live with the controversial care.data scheme.

In the letter, RCGP Honorary Secretary Professor Nigel Mathers calls on the organisation to show that it is "beyond reproach" and that it has done  "everything practically possible" to ensure that patients and the public know about their rights to opt out of the data sharing initiative.

The RCGP is asking for further clarification for the public on how their data will be used, including:

  • The purposes for which "amber" (pseudonymised but potentially identifiable data) can be disclosed , with particular assurance that organisations outside the NHS will not be permitted to use such data for commercial purposes.
  • Confirmation that any information disclosed by the Health and Social Care Information Centre (HSCIC) to third parties will not be sold for profit, but instead be charged for on a cost-recovery basis only.
  • Confirmation of who will take decisions on the disclosure of identifiable and potentially identifiable data, and the robust controls that will be put in place to manage its use.

It says that NHS England should significantly boost its efforts to communicate the scheme to the public by taking measures such as:

  • National TV, radio and online adverts highlighting the need for people to decide whether they wish to opt out.
  • A personalised letter to everyone whose records could potentially be uploaded onto the care.data system, to supplement the leaflet which is already being distributed to each household.
  • Further work to ensure that information is accessible to those with physical and or learning disabilities, and that appropriate support is available to enable them to make an informed choice.

In the letter, Professor Mathers says: "The RCGP believes that care.data has the potential to deliver enormous benefits for patients by helping the NHS to improve the quality of care it delivers.
"While we recognise the substantial programme of activity and materials that has already been developed to communicate care.data, we believe that there is a deficit of awareness and understanding regarding the scheme amongst many members of the public and professionals.

"If the roll out of care.data is to go ahead according to the current schedule, action is urgently needed to tackle this, and to ensure that there is absolute clarity about how the scheme will work." 
He adds: "Crucially, where a scheme is based on an opt out approach, such as in the case of care.data, we believe that it is vital that the NHS is able to show that it is beyond reproach in having done everything practically possible to ensure that patients and the public know about their right to opt out prior to it going ahead.

"At present, we are concerned that levels of awareness concerning care.data are very low, and believe that there is a strong case for substantial additional activity over and above that already in place to tackle this."

Further Information

RCGP Press office - 020 3188 7574/7575
Out of hours: 0203 188 7659

Notes to editor

The Royal College of General Practitioners is a network of more than 49,000 family doctors working to improve care for patients. We work to encourage and maintain the highest standards of general medical practice and act as the voice of GPs on education, training, research and clinical standards.

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