My Lords, I am grateful to the noble Lord, Lord Hunt, for outlining the amendments in this group, and look forward to my noble friend Lord Clement-Jones’s contribution shortly.
I want to speak particularly to Amendments 298, 299 and 300. Before I do that, I want to support my noble friend Lady Tyler of Enfield and her Amendment 307. I thank the Minister for the meeting last week on children’s issues, and just want to say that my noble friend’s proposal is a neat way of resolving what has been, up until now, a nightmare, through which children at risk of abuse or with other care needs have been missed by officers in different departments using different identifying numbers. A unique identifying number can close that lacuna.
The national plan for open government published a “reset” on health data, and it is worth repeating here its commitment 4, objective 1. Objective 1 is “accountability and transparency”:
“Improving communication and engagement with the public about the access and transparency of health data, and decision-making relating to public health.”
It then asks:
“What is the problem that the commitment will address?
Civil society groups have raised concerns that health data collected and used by government is not clear, transparent or accountable enough. It leads to a failure of trust between citizens and government.”
How right that is. I pick up the points made by the noble Lord, Lord Hunt, on shared care records. There is a definite need for a solution to the problem that he outlined. Opting out is patchy, complex and—worse—inconsistent.
Last year, on part 2 of care.data, the Government decided to change the way they held and used confidential patient data, and thought it appropriate, in the 21st century, just to announce the changes on the web. There was no direct contact with patients about the changes and, unlike the debacle the time before, there was not even a leaflet going to every household. There certainly was not a wider discussion with civil society. Worst of all, there was not even a discussion with GPs. Unsurprisingly, GPs and patients were horrified and the idea was ditched last summer. However, there is one serious long-lasting result. There is now real concern that this Government are trying to be cavalier with patient data, and the NHS does not understand the problems that it is has.
Data collection and sharing are important and have been instrumental in advancing medical capabilities and improving population health. Equally, individuals have the right to understand how and why their health data is being used, and to give permission on any confidential data. Frankly, the wealth of data held by
the NHS should be used only for the benefit of the health service and for research; it should not be shared for marketing or insurance purposes, or as a benefit for a provider to make use of outside the original contract, as happened with the big data firm Palantir at the beginning of the pandemic. In February 2021, the tech justice firm Foxglove issued a law suit on behalf of openDemocracy over the NHS contract with Palantir, because of a failure to consider the impact of the deal on patients and the public without an impact assessment or consultation.
If the Government are to live up to their commitment, they need to set up a clear framework on health data with the public that sets out the fundamental principles and responsibilities for assessing whether a data-sharing partnership is in their interests and those of the NHS, while protecting privacy. That is why we need Amendment 298, because new subsection (6B) in Clause 81 appears to remove the explicit obligation that was in Section 250(6)(b) of the Health and Social Care Act 2012 that NHS England
“must have regard to an information standard published under this section”
and replaces it with a power for such obligations to be waived by regulations. That completely contradicts objective 1, “accountability and transparency”, as set out in the national plan, as I outlined at the start.
I will leave my noble friend Lord Clement-Jones to explain how the data can be protected in a much more effective way. Access to health data must be for public and patient benefit. These amendments set out to protect that patient data and put a responsibility on the Government to live up to what they claim they want to do in their national plan.
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