The UK government has refused to commit to sending a letter to 55 million patients in England informing them about its plans to extract their medical data from GP IT systems.
During a one-off session of the Parliament's Health and Social Care Committee, Lord Bethell of Romford, Under Secretary of State for Health, twice refused to agree to write to patients individually explaining how use and distribution of their data would change under government plans, and what their rights would be for opting out.
Lack of communication with patients over their data rights has been one of the key criticisms of the scheme to extract patient data from GP systems and hold it centrally for what the government describes as planning and research purposes under plans first announced in May.
Critics of the General Practice Data for Planning and Research (GPDPR) have argued that communication had been limited NHS Digital's website, hardly the internet's most popular landing page, a few tweets, and a downloadable poster for GP practices. Initially, patients had been given little more than six weeks to understand the scheme and their rights to opt out before the 1 July deadline.
This week, NHS Digital, the non-departmental government body running the scheme, agreed to move that deadline for a second time. Among other commitments, it said it would not siphon off GP data until a "campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices."
But Lord Bethell would not commit to sending a letter to each patient as part of that programme.
"We have to start in sequence with the healthcare system itself and we have to talk to GPs and health care system. I'm not ruling it out; I'm saying that I'm not prepared to commit to it today. I want to understand what we need to do to actually win patients. I'm not persuaded... a letter is the thing that's going to make the difference."
He said letters could be a "clunky form of communication" to engage patients. But campaigners have argued that, with millions of people without regular access to online information, a personally addressed letter is the best way to let them understand the changes and their rights.
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With a volley of criticism from the medical profession leading up to the first delay in the programme during June, Lord Bethell admitted that "it is frustrating that we have got off on the wrong foot."
But he argued that because of the pandemic the programme had been born in "difficult circumstances."
The new approach would mean there were not set deadlines for when NHS Digital would extract data, instead working on "mutually agreed tests" with GPs, as described in the statement announcing the second delay.
Lord Bethell, who twice lost elections to be an MP, took the opportunity to lay out what he sees as the "opportunities" for the UK economy in medical data sharing.
Asked by committee member and Conservative MP Paul Bristow if making the UK "a destination for clinical and scientific research" plays into his thinking when it comes to using patient data, the Conservative hereditary peer in the House of Lords said: "Massively."
He explained the UK had put use of data and clinical research on the agenda of the G7 Health Ministers' Meeting in June. "Other health secretaries of state from the developed nations [were all] very envious of opportunity in the UK… using the NHS as a platform for clinical research and driving innovation in therapeutics and devices, they could all see that the UK [is] fantastically placed for that: we desperately need to take advantage of that opportunity."
Under questioning, Simon Bolton, interim chief executive at NHS Digital, said patient data was released to private companies for marketing. "We do not release data for it to be to be sold for marketing," he said. However, Simon Madden, director of Policy and strategy at NHSX, the Department for Health and Social Care's digital transformation body, said the NHS did not sell data but sometimes "we asked for people to pay for... transaction costs."
At the risk of being mired in semantics, it is right to point out that NHS Digital does pass on data to companies that specialise in providing market access information to third parties, as The Register detailed.
Committee member Barbara Keeley, a Labour MP, pointed out during the session that Experian Marketing Services had been given access to data.
Lord Bethell offered to provide the committee with more information on that transaction at a later date but maintained that private companies were "not authorised" under their agreements with NHS Digital to use the data for marketing. ®