A list of radical ideas for transforming the NHS, including lifting safeguards blocking startups’ access to patient data, and nurses being incentivised to help speed trials, was privately drawn up by drug and healthcare companies in talks with senior No 10 advisers.
The proposals, which can be revealed after a freedom of information request, emerged in private roundtables convened by a taskforce appointed by Boris Johnson to generate ideas for cutting supposed red tape after Brexit.
But campaigners for transparency and patient confidentiality expressed concern that the suggestions, which included criticism of what was described as “false protectors of patient interests”, could lower standards and weaken patient protections if implemented.
The ideas emerged in a “pharma round table” attended by representatives of companies including GlaxoSmithKline, Johnson & Johnson, drug firm lobbyists and figures including Johnson’s chief health adviser, William Warr, and at another for digital health.
Minutes show that ideas included:
• The creation of a new category of what were described as “special forces nurses” to “reward’’ NHS staff who helped speed up testing and trials of new drugs in hospitals. The minutes state: “This would help the industry move away from the current culture/fear of scapegoating if anything goes wrong.”
• Removing barriers preventing startup companies from accessing NHS data. Such firms have traditionally been excluded on account of the risks associated with them.
• “Data trusts” – third parties independent of the NHS and industry – that would hold and allow startup companies access to NHS data, as a way of overcoming concerns about confidentiality and the use of private information.
• A data equivalent of the organ donor scheme, which patients could opt in to, with the result that driving licences might read “data donor” as well as “organ donor”. The minutes described it as an “attractive idea” but added that a Tory MP and taskforce member, George Freeman, had previously championed this and could not find a form the then health secretary, Jeremy Hunt, was comfortable with.
• Easing the level of inspection of innovative cell therapy – the introduction of healthy cells into a body to destroy diseased ones – required by the Human Tissue Authority. Critics have expressed concern about reducing regulation and oversight in a relatively new area where ethically sensitive issues have cropped up.
The minutes stated drugs and treatments were now “ideally” proved during experimental testing but added: “Currently false protectors of patient interests inhibit novel treatment development by upholding a so-called gold standard that excludes the possibility of/fails to recognise this kind of testing …
“Patients themselves are typically willing for their data to be used in responsible ways; it is with these ‘protector’ organisations that the scepticism comes in.”
Phil Booth, coordinator of medConfidential, a group campaigning for confidentiality and consent in healthcare, said: “Of course pharma and tech companies will always want more data, but ‘speeding up innovation’ should never mean fewer or weakened protections for patients.
“Public trust in use of our health data depends on everyone following the same rules. That means no privileged access, no ‘data VIP lanes’ – and certainly doesn’t mean dropping standards or safeguards just so startups can join in.
“If the purpose of something is to make patients’ data available for commercial exploitation, then it doesn’t matter how ‘independent’ it is – many simply won’t trust it.”
A government spokesperson said it was proud of its collaborative work with the pharmaceutical industry, the NHS and regulators, and referred to the success of Covid vaccines.
“This work is just one example of where we have been able to use our regulatory freedoms resulting from Brexit, such as having an independent sovereign regulator. In future, we will look to build on this collaboration to accelerate research on how to tackle other major public health challenges, such as cancer and dementia.”
Prof Martin McKee, the former president of the European Public Health Association, an umbrella organisation for European public health associations, said the use of terms such as “false protectors of patient interests” did not encourage confidence.
Colette Goldrick, executive director, strategy, research and partnerships at the Association of the British Pharmaceutical Industry, said health data was increasingly important in helping researchers to understand disease and develop treatments.
A spokesperson for the Bioindustry association said it used the round table to discuss privately, as it had done publicly, the need for clarity about medicine regulation and the Northern Ireland protocol.
Johnson & Johnson declined to comment. GlaxoSmithKline has been approached for comment.
