College calls for NHS England to address six demands after care data delay

NHS England’s decision to delay the introduction of a controversial care data scheme has been welcomed by the Royal College of General Practitioners (RCGP).

NHS England announced it was to delay the introduction of the scheme through which a national patients’ records database would be created, until the autumn, instead of the planned launch in April.

But the College has called on NHS England to use the extra six months to assure the public and GPs that it will address its six guarantees to ensure that the programme is introduced in a way that generates widespread confidence, understanding and support.

The College raised the concerns of GPs across the country recently when it issued a statement saying there was a ‘crisis of public confidence’ in the scheme. It also warned that ‘many GPs remain uncertain about the safeguards that will apply’. 

In the letter to the government body, RCGP Honorary Secretary Professor Nigel Mathers set out three demands to inform the public on how their data will be used, including: 
– Clarification of 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.

In the letter, Professor Mathers also called for NHS England to 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.

Professor Mathers said: “The College has supported the principles of the care data initiative from the outset, as we believe that it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious disease.

“However, the lack of information and awareness led to a crisis of confidence among patients and a lack of clarity for GPs about what safeguards would apply.

“The extra six months will provide NHS England with the chance to meet our six demands, which would go a long way to providing the scheme with the widespread confidence, understanding and support that it needs in order to succeed.

“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.”