Exclusive NHS England wants to expand its care.data extraction scheme to also include ‘sensitive’ patient information, despite initially saying these conditions would be excluded.
Currently, diagnoses such as HIV or AIDS, sexually transmitted infections and medical history mentioning abortions, IVF treatment, convictions or abuse have been classed as ‘sensitive’ and are set to be excluded when the Government’s flagship record-sharing scheme goes live. However Pulse can reveal that NHS England is preparing to consult on expanding the scheme to include some or all of this information in the extract, as well as who has access to the database.
The proposals were revealed in minutes from the latest meeting of NHS England’s care.data advisory group, where care.data programme director Eve Roodhouse presented a paper suggesting the extended scope. The minutes read: ‘Eve presented… a paper which sets out proposals for expanding the scope (e.g. by expanding the data collected from GP practices) and utility (e.g. who has access to the linked data). The details of the consultation process to support this future roadmap is currently being worked out.’
They added: ‘It was proposed that this be supported by a consultation process to ensure that scope change submissions are appropriate.’
However GPC said care.data was ‘controverisal enough’ without any expansion of the dataset.
GPC deputy chair Dr Richard Vautrey said: ‘The original plans for care.data were controversial enough and the anxiety they caused led to the current delay. This suggested mission creep will only add to the concerns held by many patients and clinicians about this project and make them even less likely to support it’s wider roll-out.’
A privacy protection group represented on the care.data advisory group expressed concern that patients may come to withhold information from their own GP if they are concerned about confidentiality.
medConfidential coordinator Phil Booth said: ‘The two conditions that crop up in discussion – mental health and HIV/AIDS – are stigmatised conditions. It’s really complex because if you look at the top level and all the good that can be done then it’s a good thing. However on an individual level, some patients are actually still needing to be convinced to confirm their HIV status to their GP.’
But Dr Neil Bhatia, a GP in Yateley, Hampshire who launched the care-data.info site to inform the public about the scheme, said specifically excluded certain conditions while branding them as ‘sensitive’ could further add to existing stigma.
He said: ‘Some with those diagnoses, such as for example HIV, say that specifically excluding such diagnoses as “sensitive” further stigmatises those with the disease, and so such read codes should be uploaded. They absolutely should be telling people that the datasets will be expanded to include these items, but then they barely told people about care.data in the first place.’
An NHS England spokesperson said: ‘The care.data advisory group has agreed that it will look at methods for future scoping around inclusion of sensitive data, highlighted in the notes from the meeting in June. In the meantime there will not be any change to the original plans for the data extract.’
Care.data was delayed in February to build public understanding and will now be preceded by a pilot in 100-500 practices.
Information extracted to care.data can only be used for the ‘benefit of health and care’ after new legislation was enacted in the wake of revelations that records had been sold to insurance organisations.