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NHS: Healthcare Data - Motion to Take Note

Part of the debate – in the House of Lords at 11:57 am on 6th September 2018.

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Photo of Lord Scriven Lord Scriven Liberal Democrat 11:57 am, 6th September 2018

My Lords, I also thank the noble Lord, Lord Freyberg, for initiating this timely and important debate. The issue of data and healthcare will be vital as the moral, legal and ethical issues come more to the fore. I am also pleased to follow the noble Lord, Lord Hunt of Kings Heath. I was a rookie health service trainee when the noble Lord was the first chief executive of the NHS Confederation. I realise having listened to him today that I am still a novice and he is still at the top of his game when it comes to health issues.

There is huge potential for the use of this data. Absolutely phenomenal gains can be made, whether about smart pills that can be taken, individual data, the application of artificial intelligence, remote procedures, or algorithms being created that can prevent health problems and be predictive. However, we must not get carried away by the potential without thinking about the ethical and governance issues that both noble Lords have spoken about previously. If we do not do this, data sharing will not work and, importantly, it will not get public support and acceptance. Without that, it will fail.

I want to look at three areas in the time that I have been allocated: governance, public support and trust, and the commercialisation and use of the data. I know I will not be popular if I start talking about NHS structure. It is never going to be the thing that gets people out of their seats and excited, but it is vital that we talk about governance structures which are smart and applicable to this new way of working. This explosion of data means that we need proper ethical governance, based around a clear strategy and outcomes for use, as the noble Lord has already said.

A plethora of organisations is involved in this: NHS England, the Department of Health and Social Care, the National Information Board, NHS Digital and Public Health England. This will lead to things falling through the gaps and no one being held to account for the use and application of this data. We have already seen a number of issues, including around how DeepMind Google uses data and Public Health England recently giving data to a tobacco company. There is, therefore, a need to streamline the governance structures and make one body responsible and accountable for the strategy, application and use of data in the NHS. My first question is this: will the Government commit to look at governance structures and make sure that there are clear accountability lines, and the possibility of one body having ultimate responsibility for the use of data?

As both noble Lords who spoke previously said, this cannot be done without getting the public on side through gaining their trust and support. I want to be radical and talk about a total rethink of this. We no longer live in a Victorian age of bureaucracy and a concrete-type world. We now live in a networked, digital world that is informed and connected. So whose data is this? It is my data; it is your data; it is the patient’s data. Why, therefore, do patients not hold the data, with government having to opt in? It is not fantasy to say that. Look at what Estonia is doing on digital usage by its population. It can be done. It would make government and the NHS think about the use of data—how it would be sold, what it is needed for, what the ethics of this are—rather than patients being passive and having to opt out. A radical view is needed. Will the Minister look at the radical option of data being held by the individual and government having to opt in?

There is nothing to fear if we get the arguments right, explain it to patients correctly and understand the outcomes. Most people will want improved health, not just for them but for their children, their communities and the population at large. We need a radical rethink on this, if we are going to change whose data it is and get the Government to where they need to be, not just on educating people about this but on understanding the application of this data.

The final issue I want to discuss is commercialisation, which has already been talked about by both noble Lords. I am pleased that, yesterday, the government standards were announced. That is very good but it does not go far enough. There are issues here. Once the initial data has been used, how will it then be used in the international market? What dividends will come back to the NHS from that? We are talking not just about getting the initial kick from the data back into the NHS but about how it and the IP can then be used more broadly. The issue is not just financial return. We must look at innovative ways in which the IP and spin-out can be applied and used free of charge back in the NHS. That is also important. Therefore, what thinking is there on commercialisation and application back to the NHS, so that it can benefit?

It is then a case of how we invest that. There is a good case to be made for a UK sovereign health fund, which could be used to reinvest in future technology and future use of data to meet the outcomes. Will the Minister and the Government look at the setting up and use of such a UK sovereign health fund?