UK Parliament / Open data

Health and Social Care Information Centre (Transfer of Functions, Abolition and Transitional Provisions) Regulations 2023

My Lords, I echo the thanks of the noble Lord, Lord Hunt of Kings Heath, for the helpful and detailed discussions that the Minister, his predecessors and officials have had with the small group of us who have been worried about this issue, even before the Health and Care Bill started its passage through your Lordships’ House. Although some of us were more expert than others, and I was definitely not one of the expert members of the group, I care greatly about the digital revolution and ensuring that patient data is kept confidential.

The noble Lord, Lord Hunt, said that he supports improving and transforming data in the NHS. That cannot come soon enough. I have said before in this House, and it is still true probably a decade on from when I first said it here, that for my monthly blood tests I have to print out, photocopy and send copies to my hospital consultant because the hospital that I go to and the hospital that processes my blood tests do not use the same data system. That is ridiculous. It needs to change.

It is a real problem, as the noble Lord, Lord Hunt, set out, that the consultation and draft statutory guidance have been rushed through. I want to set that in the same context as that to which he referred, about perhaps going at a slightly slower pace while wanting the revolution to start. That might have been helpful. Omitting organisations such as the BMA from seeing the original statutory guidance raises the question: who else has not seen it? The question is almost impossible to answer. However, the detail of how this is going to work in practice inside the NHS will be the business of all clinical and administrative staff at all levels. It is vital that it works.

The Minister will know that I have repeatedly raised concerns about patient data and how people were not consulted in the two previous patient data and care.data

communications. Both had to be held back because there has been outrage from the public that they were not given the chance to understand how their data would be used. Earlier this week, the Mirror reported that Matt Hancock had talked about handing over private patient medical records and the Covid test results of millions of UK residents to US data company Palantir fairly early on in the pandemic. It had offered to hold its data in its Foundry system, clean it and send it back to the NHS. I spoke about this in the Procurement Bill because I am concerned about how data can be kept truly confidential. Regarding the GP data for planning and research, the NHS has already published its federated data platform details, which is called by the Mirror the Palantir procurement prospectus. Perhaps I may ask the Minister, as an example of transparency for the new NHS England digital processes set out, whether organisations such as Palantir that are handling data records will absolutely not be permitted to use that data—even anonymised or deidentified—outside the purposes of the NHS, other than for agreed research being used in what my noble friend Lord Clement-Jones would say, if he were able to be in his place today, was a safe haven, thereby ensuring that that patient data remains completely confidential. The Minister knows, because I have said it before, that the problem is that in the past it has been possible to identify patient data when it was pseudonymised. I want confirmation that deidentifying really means that individuals cannot be tracked down and, most importantly, that the data will not be used elsewhere or sold on.

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I thank the Minister for his assurance so far that no patient’s data will be held and passed on beyond the NHS, but I am not sure that I have clarity about the new federated data platform. I echo the concerns of the noble Lord, Lord Hunt, about the loss of NHS Digital’s separate oversight group. That has worked well. I hear from our private discussions and from what the noble Lord said at the Dispatch Box that a mechanism is in place with an oversight committee, but it is still within NHS England. Can the Minister confirm that the first annual report that comes to your Lordships’ House will address how well this is working in practice? We need specifically to look at this issue because all noble Lords who have been involved in discussions with officials have raised this point.

I am grateful for the Minister’s speech at the Dispatch Box and it is good to hear that there will be no mission creep, and that it has to be the Secretary of State who will agree or not agree to instruct NHS England should there be any change to the data being collected.

Finally, I return to the timing and the speed. This feels very much like a rerun of the closure of Public Health England and the creation of the UKHSA when a Covid surge was still going on; officials in the department and NHS staff were working at full tilt and had to change the way in which they worked in order to cope with the UKHSA as a new body. Can the Minister reassure us that that will not be the same when NHS Digital moves into NHS England? My fear is that the pressure on the NHS at the moment means

that the situation could be similar to the pressure that the UKHSA has faced over the past year in trying to create a new organisation and new structures at a time of immense pressure.

About this proceeding contribution

Reference

827 cc284-7 

Session

2022-23

Chamber / Committee

House of Lords chamber
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