Health and Care Bill

Lord Scriven Excerpts

Committee stage
Wednesday 9th February 2022 Lords Chamber

These issues are hard and I am sure we will discuss them again. Will the Minister acknowledge the problems and the need for them to be addressed?

[Lord Scriven (LD)]

My Lords, I would also like to speak quickly on these amendments. The last suite of amendments was about professionals having confidence in the health service. Patient data is the bedrock of individuals and citizens having confidence in their health service and how their data is used. I used the phrase “living in a parallel universe” in Committee a few days ago. Today, the Government published Joining up Care for People, Places and Populations, their proposals for health and social care integration. On reading chapter 4 on digital and data, it would appear that we are living in a parallel universe, because there are clear issues about what the Government say this integration will be. The document states:

“This will ensure each ICS has a functional and single health care and adult social care record for each citizen by 2024”.


There is nothing about opt-out. This is a very clear view about what will happen. I will explain why it is a fantasy world in a minute.

I come back to Amendment 300 in the name of the noble Lord, Lord Hunt. There is a really important thing about the standard process for opt-out. In the area where I live, there is a DGH, a teaching hospital, a community care trust, a mental health trust, a maternity unit, a social care provider—it could be the council or from the voluntary and third sector—and my GP. If there is no standardised approach to opt-out, it will be needed in nine or 10 organisations. That is why we need a standard opt-out approach. It is absolutely wrong for the citizen to trail through nine different organisations, probably with nine different processes, if they wish to opt out, because not every citizen may wish to be part of a single health and adult social care record by 2024. I hope that most will, because they are important, but there is the issue of opt-out.

The document goes on to state how data will be used; it goes way beyond individual healthcare. It talks about population health platforms, and how data will be used and can be directed with a single standard from the centre. On information governance, paragraph 4.15 says that

“This will make sure that when it is accessed or provided (for whatever purpose), it is in a standard form, both readable by and consistently meaningful to the user or recipient”.


It is good to have it in a standard form but “for whatever purpose” leads to a wider definition. The document also says that the standard will be laid out in the Bill but, as the noble Lord, Lord Hunt, said, that is at the direction of the Secretary of State through regulation, which is worrying.

I ask the Minister, clearly, how this new document fits with the Bill we are discussing. Why, yet again, is a White Paper ahead of the legislation we are talking about today? There are things we could amend that would stop some of the things in this White Paper.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I will respond to the debate, but my comments apply equally to the next group, so I hope that the noble Baroness, Lady McIntosh, will forgive me if I do not respond to that group separately. We have heard some very thoughtful and persuasive contributions to the debate on these amendments this evening, and once again my noble friend Lord Hunt and the noble Lord, Lord Clement-Jones, have very eloquently led the charge. I congratulate them on their contributions and the constructive detail of their proposals. Issues such as this require some specific proposals to have any meaning and their amendments very much do that: they spell out some solutions to the challenges we face. I also welcome the specific proposal from the noble Baroness, Lady Tyler, who made the case well for a single identifier for children.

The underlying issues around the use of information collected by the NHS are not new. As we know and have heard, the NHS is almost unique in being a single player in this field, at least for some purposes. It can and often does lead the world in its ability to collect and aggregate patient data to drive improvement and for other non-profit-making purposes.

Since the organisational changes of the 1990s, data collection and use have been well developed, and information and analysis—for example, from the Secondary Uses Service and some GP sources—have been extensively used by academics and researchers, as well as operational managers, to huge public benefit. But we have struggled, as we have heard. Despite hugely expensive meanders into, for example, the National Programme for IT, we are far from the goal of integrated data sharing, even in a single hospital, let alone all hospitals, let alone for all care. Clearly, technical, legal and cultural barriers need to be overcome before we can maximise the use of all the data collected.

As noble Lords have pointed out, the groundswell of opposition to data collection and the related concerns about who gets to use it and for what purposes runs along these barriers. We know that the NHS often has dismal communications—for example, around CareCo and the recent changes to the use of GP data, which we have heard about this evening.

Although we do not own our data, there is a very powerful set of legal protections over what data can be collected and stored about us and what it can be used for. If the public had absolute confidence in the systems and usage rules, there would be far fewer objections to their information being used to drive improved healthcare, innovative drugs research or better preventive or public health information programmes. But the reality is that concerns are widespread—about data breaches, about NHS data reaching people who do not need to see it and, more recently, as we have heard, about data being used by a number of unethical organisations and private companies to drive profitability rather than for the improvement of public health.

Many patients would wish to be able to refuse to allow data collected about them to be used simply to drive a better marketing campaign for slimming or cosmetic aids but would allow their data to be aggregated so that better drugs could be developed and treatments improved to save lives; that would be an altogether different matter. Amendment 305A, in the name of my noble friend Lord Hunt, on establishing a sovereign health fund to invest in data-driven healthcare assets to generate long-term income for health and care makes that point, and I am sure it would have public support.

The key principle should be that all data collected for the purposes of care should be held and controlled by the public sector and its use protected. It should be subject to ethical guidelines and independently verified by an expert oversight group. These amendments would strengthen these rights in those regards.

Anyone who visited a hospital 20 years ago and walked around would probably have come across a trolley stacked with files that could easily have been removed or read. However, IT and the ability to aggregate vast amounts of data, allowing serious data breaches, is a modern and valid concern. My noble friend Lord Davies illustrated this with specific concerns about smart programmes which can identify individual people from a very small amount of data about their lives.

So we do feel that these amendments would be a very helpful way to address the underlying and fundamental problems of the lack of patient and public confidence in how their data is going to be used and shared. I hope the Minister, the noble Baroness—no, it is the noble Lord—agrees that these proposals offer a helpful way forward in addressing these concerns. While we will not press the amendments to a vote this evening, I hope he is able to offer some reassurance that some of these practical proposals will be taken forward by the Government.