Care Bill [HL]

Lord Ribeiro Excerpts

Wednesday 7th May 2014 Lords Chamber

[Lord Owen (Ind SD)]

My Lords, I speak to my Amendment 45E. A recent comment article in the Lancet starts off with the words:

“Trust in the protection of confidential patient data in England seems to be at an all-time low given recent breaches in releases of patient data and the finding that hospital data have been sold to companies with insufficient oversight”.

There is no question or doubt that the research base in this country—particularly the base in pharmaceuticals and medical bioscience—is now at a very high level. Of course, it is because of this that there is a very strong debate over whether AstraZeneca should be taken over by the very large American pharmaceutical company Pfizer.

However, we also have to recognise in this debate that without confidence and the free exchange of information in this world of science data, research will be very badly damaged. Already we know that very serious members of the medical profession want to institute not the present opt-out system but an opt-in system. Most of us know that that will make great inroads into the effectiveness of our data. There are also some GPs who, because of their concerns, now actively encourage patients to use their right to opt out. This is therefore very urgent, and I welcome that the Government, in recognition of the crisis of confidence, have instituted a six-month pause. I understand that the pause has now been extended and that there is no artificial deadline.

In that context, there is another root cause for concern. We have been making data available to the pharmaceutical industry and other areas of commercial science for some time. Perhaps I should declare an interest. For 16 years—I am now off the board—I was on the board of Abbott Laboratories in Chicago, one of the very big American healthcare companies. However, well before that I was a neuroscientist at St Thomas’s Hospital and worked in the early 1960s with ICI, using its remarkable pharmaceutical research product, beta-blocker drugs—one of the great discoveries which led to James Black winning a Nobel Prize. I therefore have no need to assure noble Lords of my belief that a thriving commercial sector in pharmaceutical and other research is an important addition to the research that goes on in universities and hospitals up and down the country.

However, it is a fact that when you embark on a new extension of data being available to commercial operations outside the public sector, people demand and expect much higher safeguards. Before moving my own amendment and shoring it up, I looked very carefully at whether it was possible to get agreement on a mechanism to keep data in the public sector unless commercial organisations have expressed consent. That was seen by many people as blocking commercial activity, and it was not possible to reach agreement on it. That makes it even more important that we should have a statutory form of oversight.

The amendment I placed on the Order Paper proposes a new clause that would place on a statutory footing the current non-statutory Independent Information Governance Oversight Panel, which was set up by the Secretary of State. The present chairman, Fiona Caldicott, has the support of many people in this area, both in this House and outside. However, its present non-statutory terms of reference need to be given the authority of a statutory imposition. The new clause would also require persons and bodies across the health and social care system to have regard to its advice. It defines the relevant information; I strongly agree with the two previous amendments tabled by the noble Lords, Lord Turnberg and Lord Hunt. It is absolutely necessary to make it crystal clear what “promotion” means. It has different meanings in many different contexts—some perfectly acceptable and some borderline objectionable. There are other detailed aspects of the amendment, but it is pretty clear in its intent.

The medical profession is not the only body that ought to be considered in this. The Royal Statistical Society has made it clear that oversight and public trust in enforcement could improve the situation. It says that a new statutory body is likely to be needed to fulfil this role. Statisticians are as worried about the loss of confidence that is developing over medical data as anyone in the medical profession—they are the actual people who handle this.

I am pleased, indeed proud, that the amendment is supported by the Wellcome Trust. There is no better trust in the world than the Wellcome Trust. It is also supported by the charities that are associated with medical research, which also know the importance of the Wellcome Trust’s money and expertise. I have talked to the Minister about this and I will leave my comments for when I formally press the amendment, as I do not want to traduce what he is going to say to the House. He explained his position with his usual courtesy, but I remain of the view that, if we are to hold, restore and, in the future, enlarge public confidence—because I believe a greater exchange of information has huge potential—we have to listen to these concerns.

Whether we like it or not, people expect answerability, not just from NHS England, which is a quango, but also from the Secretary of State. Parliament has a role in this, and the issue is every bit as sensitive as some of the others that we brought under statutory oversight, such as embryology, the whole question of DNA and research into all these areas. We thought that they were so sensitive that Parliament should have a say, at least, and should know whether Ministers are taking actions that have qualifications, or even objections, from a statutory body so that we can make a determination. It is in that spirit that I will later seek to press the amendment.

[Lord Ribeiro (Con)]

My Lords, when many members of the public, and patients in particular, feel that their data may be mis-sold to insurance companies or other bodies that may use them either to increase premiums or for their own personal benefit, then we have a problem. Earlier this afternoon we had assurances from the Minister that that would not be the case. This must be information that is used for non-commercial purposes, which has been made very clear. It is important, too, to remember that patients can opt out. I have heard these expressions about the difficulties that they may have with GPs who might prevent their doing so, but they have a choice. They may well opt out. I believe that if we go ahead with care.data and provide the information as needed, many patients, in time, will see the benefits of this and will choose to opt back in.

We have also talked about the need, again, to have anonymised data and to prevent it going anywhere other than the non-commercial areas. Patients also have a right to decide what to do with their data; it is enshrined in the NHS constitution that they have rights on the disclosure of their personal data. I personally feel that all patients should have their own information—they should have their own notes. They should have a memory stick with their records and have ownership of their records. They can then determine, in the circumstances, where that information goes.

Many people are horrified by the idea of patients having their own records. I had experience of this in 1973, when I was a surgeon working in Ghana. Patients would come with their own notes, moth-eaten and dog-eared. The reason was very simple: if their notes were in the hospital, a certain bribe had to be paid before those notes could be released. Patients have always been suspicious about what happens to their notes. Give them to them—that is what I would say.

The proposal from the noble Lord, Lord Owen, for yet another layer of scrutiny above what is being proposed, is something that we should consider very carefully. He referred to the fact that it would be for the Secretary of State and NHS England to make those decisions. However, noble Lords will recall that when we debated this matter not that long ago, the noble Lord, Lord Willis, and others put forward a proposal for the Health Research Authority. If this Bill goes through, the Health Research Authority will have the authority to decide how information is disclosed. Therefore, I speak very strongly in support of the care.data programme. It is important for patients to be reassured and that point has been well made from all sides of the House. They clearly have to have that reassurance. However, I see no need for an extra layer or an oversight panel. That would provide just one more barrier for researchers to climb.