My Lords, unfortunately, I too was unable to be at Second Reading. I speak today to support the stand part notice from the noble Baroness, Lady Thornton, and on what the noble Baroness, Lady Finn, said about the important review of data collection—actually, across the health sector, as I will explain, but particularly of data relating to abortions.
The noble Baroness, Lady Thornton, spoke of how some elements of this short Bill are inconsistent, which makes it unable to deliver what the noble Lord, Lord Moylan, hopes for, despite what he said—I will come on to explain why—even if it were the right thing to do. I agree with the points that the noble Baroness, Lady Thornton, made.
One issue at the heart of this inconsistency is the use of patients’ confidential health personal data. There is an absolute presumption by patients that their health personal data will always be kept confidential between them and their medical practitioners. Indeed, noble Lords may remember, when the then Government proposed care.data plans a few years ago, it became clear that we were likely to move to a US-type system of allowing researchers, insurers et cetera access to anonymised and pseudonymised data. I can tell the noble Baroness, Lady Lawlor, that, during that debate, it was important to note that it is possible to reverse most anonymised and pseudonymised data, particularly when dealing with an unusual circumstance. Once you have one or two identifiers, you can get to a very small geographic position very quickly—sometimes to a postcode, frankly. Therein lies the problem: confidentiality is lost.
More worrying were the original proposals in the Bill that became the Police, Crime, Sentencing and Courts Act 2022, which gave the police and the Home Secretary—then Priti Patel—the power to demand from any relevant person or authority, which included health authorities at the time, to see data that might be of interest in an investigation. I was working on that Bill and, when I queried this power in your Lordships’ House, it transpired that it was not just for suspects of crime but for anyone connected with the incident, who might or might not be a witness. That went completely against everything in a doctor’s sacred oath of confidentiality with regard to their patient. I am pleased to say that, following my amendments to that Bill and pressure from doctors, the then Clause 16(4)(a) was modified to prevent access to health data compared to data from other bodies, where it still sits.
That was followed by a debate, on the Health and Care Bill, about the use of patients’ personal health data for research. My noble friend Lord Clement-Jones, other noble Lords and I made it very clear that assuming that anonymised or pseudonymised data could not be reverse-engineered was not acceptable. Out of that, a new system of a black box, where the anonymity of patients is guaranteed, was introduced.
However, abortion data is different because it is not within these safeguards. The Abortion Act 1967 requires that the woman’s name and date of birth or a personal identifier must be submitted on every abortion and provided to the Chief Medical Officer via the abortion notification system. While, as others have said, this data includes complications prior to discharge, the “Hospital Episode Statistics” referred to in Clause 1(3)(b) of the Bill from the noble Lord, Lord Moylan, are based only on abortion data from trusts, which are not linked to abortion records. This means that the data is coming from two different sources, which are collecting different data. As the briefing from BPAS tells us, neither dataset actually captures all abortion complications, nor can the hospital episode statistics be analysed by methods of gestation or abortion—another difference, yet again. I do not think that the noble Lord, Lord Moylan, covered that point of disparity when he spoke earlier. My worry is that the annual report would not actually reflect the wider picture.
The second issue that I will raise is of those other delicate areas that might inadvertently be drawn into this type of reporting on complications of abortion. In the debate earlier today in your Lordships’ House, we discussed miscarriages and preterm births. Nearly 50 years ago, I had an early miscarriage and, when I went to the hospital, I was told that I was having a “spontaneous abortion”—a ghastly phrase. I still had remnants inside my body that needed to be removed to ensure a “complete abortion”—an even more ghastly phrase. In the middle of my grief at losing my first baby, the medics were talking about “abortion”.
The very helpful briefing from the Royal College of Obstetricians and Gynaecologists points out that the differing terms that can be entered into hospital coding are “induced miscarriage” and “spontaneous abortion”. It says:
“This can result in a code being applied for an abortion complication when it should have been for a miscarriage complication and vice versa.”
This is not just about words such as “spontaneous abortion”. Following on the speech from the noble Baroness, Lady Bennett, in the USA, since the Dobbs case, miscarriage has increasingly been brought into the debate about abortion. West Virginia has one of the toughest sets of abortion laws, allowing it only for cases of rape, incest or if the woman has an ectopic or totally non-viable pregnancy. But it gets worse. Last week, in Raleigh County, West Virginia, the prosecuting attorney, Tom Truman, advised women to get in touch with police, law enforcement or a doctor if they were worried that they might be charged with mishandling foetal remains. The example cited was the arrest of a woman for disposing of foetal remains in her bins. He said that a number of criminal charges under state code, including felonies, could be levied against a woman who flushes foetal remains, buries them or otherwise disposes of them following an involuntary abortion, also called a miscarriage. A West Virginian woman in my situation, which I talked about earlier, could well be prosecuted. The miscarriage that I referred to is not unusual. I lost the tiny foetus down the toilet, and I was distressed beyond measure. In West Virginia, you would now have to retrieve the foetal remains or be at risk of prosecution.
I am sure that there is absolutely no intention in the UK for this to happen, but the debate happening in the US is beginning to colour the debate we are having here. I am very clear that the problem is that some people want miscarriage to be treated as suspicious. They clearly are not medics. It is thought that 15% to 20% of pregnancies end in miscarriage. It is surprisingly common, and good luck to that prosecutor in West Virginia. He is going to spend his entire time on people reporting miscarriage. Above all, the issue of miscarriage and spontaneous abortion is yet another that muddles the data proposed in this annual report and demonstrates, sadly, that it is not fit for purpose.