RCGP demands NHS England informs public of care.data scheme

The RCGP has demanded that NHS England does 'everything practically possible' to ensure the public knows of their right to opt out of the care.data scheme before any data is extracted from GP records.

Professor Mathers’ letter says there is a ‘deficit of awareness’ of the care.data scheme
Professor Mathers’ letter says there is a ‘deficit of awareness’ of the care.data scheme

The college has increased its pressure on NHS England to make sure people are fully aware of the care.data programme, with RCGP honorary secretary, Professor Nigel Mathers, writing to NHS England calling for a six-point plan of action.

Earlier this month the college called for a major publicity campaign to ‘properly inform’ the public about the care.data scheme, and warned that the future of the programme could be put at risk if communication with the public was not improved.

Professor Mathers’ letter says there is a ‘deficit of awareness’ of the care.data scheme among the general public and healthcare professionals, and that there is a ‘strong case for substantial additional activity’ to tell people of the scheme’s implications.

He says ‘absolute clarity’ on how the scheme will work is needed if it is not to be delayed. The first data is due to be uploaded to care.data next month.

The RCGP’s six-point plan calls for:

  • Clarification on how pseudonymised but potentially identifiable data is used, and assurances that it won’t be used for commercial purposes.
  • A pledge that data will not be sold for profit.
  • Confirmation of who will decide on the disclosure of identifiable and potentially identifiable data and what controls on its use will be in place.
  • National TV, radio and online advertisements highlighting the fact that people must opt out if they don’t want their data shared.
  • A personalised letter explaining care.data sent to everyone whose records could be uploaded to the system.
  • More work to make sure information on care.data is available to people with physical and learning disabilities.

MP Roger Godsiff (Lab, Birmingham Hall Green) has tabled a parliamentary question, due to be answered later this month, asking the government what level of public awareness of the care.data scheme will be ‘deemed necessary’ before GPs are asked to upload data to the programme.

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