The UK's Royal College of GPs (RCGP) has written to NHS Digital to call for better communication with the public about their rights in opting out of what has been dubbed the "biggest data grab in NHS history."
The professional body, which runs GP accreditation in the UK, said it supported the principle of improved sharing of data for important healthcare planning and research.
However, the doctors' group believes it is critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information, said professor Martin Marshall, chair of the RCGP.
"The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the COVID-19 vaccination programme, so we have written to NHS Digital urging them to undertake greater communications with the public about this new collection and their options for opting out," he said.
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Last month, it emerged that the NHS was preparing for a mass haul of GP patient data, giving patients little information or warning about the planned transfer of medical records to a central store for research purposes – and with no prospect of the data being deleted – with a 23 June deadline to opt out.
GPs and campaign groups expressed fears the data could be used by private sector firms for gaining access to NHS markets.
medConfidential, which works to ensure patients have a choice in how their data is used, said it had been struggling to guide the public through their choices due to what it termed a string of out-of-date and misleading messaging on the NHS Digital website.
Meanwhile, NHS Digital, the non-departmental public body, which designs, develops and operates national IT and data services, has said it would "not approve requests for data where the purpose is for marketing... including promoting or selling products or services, market research or advertising."
However, data available on the NHS Digital website already shows firms are using hospital patient data for this purpose. The organisation has been unable to say how criteria used for governing access to the data would change during the haul of GP data.
The RCGP and the BMA, the UK doctors' union, have been working with the NHS on planning the new collection of data over the past three years through their Joint GP IT Committee. They had made representations on behalf of GP practices to ensure stronger arrangements were put in place over the security and intended uses of the data collected, they said in a joint statement.
Prof Marshall said the new data haul was a legal requirement of GP practices and the organisations would "continu[e] to lobby NHS Digital to ensure appropriate safeguards are in place for how the data collected is used." ®