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 C are for P eople, P laces and P opulations, 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.