NHS Patient Data

Hugh Bayley Excerpts

Thursday 27th February 2014 Westminster Hall

[Mr George Mudie (Leeds East) (Lab)]

It is a pleasure to serve under your distinguished chairmanship, Mr Bayley. I must compliment the hon. Member for Mid Norfolk (George Freeman). I have always regarded him as a talented man, but when a man can speak, take a telephone call, say who has rung him and switch the phone off without breaking a sentence, that is real ability.

I should almost apologise for daring to speak after the hon. Gentleman. I am at pains to say that I am not putting the opposite view to his. I had a debate last week. I only had half an hour to share with the Minister, but I gave up five of my valuable minutes to allow the hon. Gentleman to speak.

I do not see the debate as having two opposite sides; I see it as two different responsibilities or objectives that should be rolled into one objective. The hon. Gentleman spoke today for more than three quarters of an hour, and all but five minutes were on the medical side.

I said this last week—I will say it again—but I do not challenge the medical benefits of the exercise. I concede that medical improvements will flow from it. Those benefits are accepted and encouraged, but the other side is personal privacy in the important field of individuals’ medical records. There were indications, but I am not sure that the common ground was in the five points he made. We must search for common ground, but I will show the hon. Gentleman and the House why it is difficult to find.

This is not a dialogue; NHS England and the body with the long set of initials that was set up are not listening. They do not intend to listen or allow the public a real choice in the matter—that is the problem. If those bodies did as the hon. Gentleman said and saw the matter as, “If we are going to do this, we must gain the trust of the public”, we would all be in a better position. However, I do not see that as their objective, which has always been to get through the formal parliamentary Committee and medical-world structure. The less we know, the less interference from us and the fewer decisions we are allowed to take, the better, because the world will be better. Well, the world will be better medically, but the dangers that we are spelling out, in terms of putting every person’s full medical records on a database, worry us.

The dangers worry us in two ways. The first is the bringing together of the databases into one huge database, where all the information about an individual patient is stored. That is an important technological computer problem—a difficult problem that has to be argued out. The second worry, which I think is the greater, is also difficult. The exercise so far would not lead an objective member of the public to trust the authorities. The worry is about the flow of information out of that database to people outside the national health service or social care.

I have in my hand the document that has caused the fuss. It was sent out as junk mail, delivered on a Monday morning with all the other junk mail; the post office has a standard way of delivering it. A person gets their pile and looks for an individual letter—no. They know it is Monday, so the pile goes into the bin. That was how the document was delivered. Some 65% of the people who were polled, “Did you read it? Did you receive it?” said no.

Mr Bayley, you are a long-established politician. You know the number of times we deliver manifestos and leaflets to houses in an election. When we then go round, people say to us, “We never hear or get anything from you.” The public’s memory of what goes through the door is pretty short, but when things come in with junk mail, that is understandable.

The real objection, however, is inside the document, and we have heard about it today. The front page is the front page. The inside pages contain the lot, including “Introduction”; “What are the benefits of sharing my information?”; “Information will also help us to:”; and “What will we do with the information?”. It is all favourable. It is all on the medical side. That is not disputed, if we get the data together and look at complaints and how they are handled. I am a lad who is into computers and databases in politics. Databases transform information in ways one could never do with pen and paper. That is conceded and encouraged, but what about the other side—the disbenefits?

I challenge anyone to find from this piece of paper the down sides or things that we have to worry about that the bodies would like to discuss with us. They are not there. The document has two pages saying that the system is great and that it will do wonderful things, and then it has a section called, “What choice do I have?” Anyone getting a piece of paper like that would read two pages, be switched off before that, and say, “When we have to opt in, why would I want to opt out? This is wonderful.” Having listened to the hon. Member for Mid Norfolk, it is wonderful, so why would anyone want to opt out?

Let me discuss some matters of trust, because that is what the issue is all about. I have been in the House for 20 years, and I do not trust Governments. I would not tell people to trust Governments, whether Labour, Liberal or Conservative. I would say to people, “Put your trust in God if you wish, but don’t trust Governments”, because the state and Governments have a life and interest of their own. The document is an example of where something has been decided that might ruin the life of anyone sitting in the Chamber, especially those sitting on our Benches. We all know, as politicians, what happened to data that were secure beyond any reason—our expenses. How secure was that database? What damage it did! It killed people and imprisoned people, and it brought us down to below journalists, estate agents and perhaps lawyers in the esteem of the public. That was a “secure” database.

Is there such a thing as a secure database? That is one of the arguments, but I am still talking about trusting the Government. Do not trust the Government. Let me take the five things the hon. Member for Mid Norfolk said about what we should do. Four of them are about the Government and public bodies.

I serve on the Treasury Committee. We have gone through the banking world. Theoretically, everyone who matters to the financial world reports to the Treasury Committee. They appear for an hour—two, if pushed—before the Committee once a year, and they have been accountable to Parliament. I remember the lad who ran the Financial Services Authority coming before us. We were discussing, I think, the withdrawal of cheques. I said to him—I was in the Chair, I think—that the public were outraged by the proposal, especially the elderly. I said, “The Committee is outraged by it. We would like you to go away and withdraw the threat to cheques. Will you do that?” “No”, he said. “I am the regulator. I do not answer to Parliament. I have statutory powers. You will have to convince me.” Those were his exact words.

Reporting to Parliament is a form of pompousness on our part. What on earth do they report to Parliament about? How do they do that? When do we see them? When do we question them?

We can look at the Annunciator monitors in the Chamber. I commend the ability of the hon. Member for Mid Norfolk to speak for nearly an hour; his speech on the subject was important enough. However, if you, Mr Bayley, were speaking in the debate that was on the Floor of the House while the hon. Gentleman was speaking, you would be talking about an important subject—the treatment of welfare beneficiaries—and you would have had six minutes. Six minutes—that is accountability to Parliament. That is the ability of the majority of parliamentarians to raise an issue. This debate is a rare event.

The hon. Gentleman talked about duty of care and a bill of rights for patients. Well, we have a duty of care in the health service. It was good, was it not? We have had it since ’48. But what happened at Mid Staffordshire? The duty of care was there. A document such as the one I was talking about matters little; the issue is about how the service is run and what happens on the ground in reality. All those patients were protected by the duty of care. All the people who died had that duty of care. It was supposed to be wonderful and supposed to protect them—but we would want a bit better protection now.

“We will make the data release body a statutory body” sounds fine, but who appoints to that statutory body? The Government appoint, one way or another. Who appoints to the committee or body that released the leaflet I was talking about? The Government. “Yes Minister” has not disappeared from our memories, so would we expect someone from York who works on the railways, for example, to be on that body or on any body appointed by this building? No. Would we expect to see a permanent secretary or an ex-permanent secretary on this great committee? “Yes Minister” would say we would.

Public sector pensions are not what they were, and we cannot have a permanent secretary retiring without having a side job given to him—and he will behave himself, or he will never get another one. Surprise, surprise, on the committee I am talking about, there are two: one from the Ministry of Defence and the other, the interim chief executive who is just leaving, from the Department of Health. Trust Government! An inquiry, a review, a statutory body or a quango—what is the first criterion for people being appointed? They behave themselves—that they are a safe pair of hands. That is the reality.

The only one of the five points made by the hon. Member for Mid Norfolk with which I totally agree is the last one, and I would push it a bit further. Misbehaviour on data of such sensitivity should not involve a fine. When the pharmaceutical or insurance industries are involved, or even the media, the penalty should be jail. The information in the file of people with a sensitive medical history could lose them their career, job, marriage, relationship or even life. That is what is in those files. That is why when we go and unburden ourselves to the doctor, we should be secure in the knowledge that what is said in the doctor’s surgery stays in the doctor’s surgery. I am not opposing records coming out, but what about the basis on which people outside this building or the national health service will have access to and be able to identify those records? Trust—we are going to trust them.

What about the prevarication over opting out? How do we opt out? I have found out about this issue in greater detail over the past two months, but how do I opt out? I have not opted out yet, because there is more than one form to fill in when doing so. On Tuesday, the Secretary of State was asked whether opting out could be done online or by telephone. Apparently, we can do it on the telephone if we are able to get through to the doctors and get a person answering, rather than an answering machine, and we can go online if the doctor is online.

Yesterday, I met a nice gentleman sent from the organisation involved—it was a pleasure, and interesting, to meet him. I asked him about opting out. He said, “Opting out is a matter for the GP.” I had asked why there was not a full-page advert in the paper explaining the arguments in favour and the worries, saying to people, “Make a balance. It is your decision. It will affect you” and including some opt-out forms. “We cannot do that”, he answered. “The GP is the holder of the data, so GPs should do it.”

What is the situation on opt-out? It is the biggest argument and the biggest concern. If we listen carefully to the reasons for concern, the medical side do not want us to opt out. The more people who find out what could happen to their records, the more who will opt out. If the authorities were straightforward, such is the way of things that the number of people who opted out would be a small proportion of the population. Rather than trust to that, they have taken the decision to minimise opt-out in a most dreadful way.

We are told to phone and make an appointment with our doctor to discuss opting out, but we have little chance of doing that even if we have lung cancer. We do not have a chance. With a medical complaint, when we try to see our doctor, the surgery says, “Ah, well, we might be able to see you next week. Can you take a day off work?” What person will take a day off work to discuss opting out? That is absolutely nonsensical and not of the real world. They want us to say, “Forget about the opting out.”

Furthermore, before leaving that subject, if people opt out, they should not think that their details will not be in the database. They will be going into the database. The point of opting out is that any information going from the database to someone else, will have the personal information taken out—date of birth, postcode, gender and all sorts of things that can identify someone. We might opt out, but our records are still in the database.

Why should we trust the authorities? I am not as articulate as the hon. Member for Mid Norfolk, but I do not have to persuade people. As Nye Bevan said,

“Why look into the crystal ball when you can read the book?”

All the patient records of everyone in the Chamber who has had hospital treatment in the past 10 years were sold to a firm of actuaries, who passed the information on to insurance companies. As a result, the insurance companies have 47 million records.

Of course we can trust Government—Government are great! We can trust the word of an individual who stands up to say, “The security is great.” Yes, we can, but that same institution then allowed all our hospital records to be passed—in fact, sold—to a firm of actuaries. Thanks to The Daily Telegraph, we know that that happened and that the information was analysed and put into a form that insurance companies could use to put up premiums for individuals and certain groups. As a result, we are paying higher premiums. That was our hospital records—“They are safe with us.” I might be getting a bit bitty, but I can pass the article to the Minister, if she wishes.

Another article was bigger—a whole front page—but I have not brought the one that I was going to speak about with me. I think it was yesterday, or the day before, in The Daily Telegraph, or The Guardian. It reported that a private firm had been in discussion with the body that is holding our records and building up the database, because it wants to buy the records, and it wants to buy them quickly. We have to ask about that individual company having discussions before the matter is even agreed, but the interesting point was at the end of the article. Not only was the company set up to deal with pharmaceutical firms—that is already straightforward—but the owner set up another company and stated that among the clients would be pharmaceutical companies. That is the word, “among”. We have to ask who the other customers are—the ones that have not been named. If the pharmaceutical companies are in there, the insurance companies will not be far behind.

In terms of trust, however, the worst thing is that spokesperson for the body in question has said that that company has been told that there will not now be any prior discussions and it must make an application in the normal way, with others, at a later date. What does that spell out—that “not now”? Two days after the balloon goes up, we go into the second period of re-examining the scheme and the matter is in all the papers, the spokesperson suddenly says, “We are not now going to have prior discussions with the firm.” I am sure the Minister will say what in fact the Secretary of State said on Tuesday in the House, namely that that sort of thing went on before, but things have been toughened up. Well, the Secretary of State has toughened things up so much that private discussions are going on with an organisation that we would all wonder about.

A further issue about trust is this: the records were going to be uploaded to the big database last autumn, but the process was stopped because some information about it came into the public arena, and the organisation took fright and said, “We will look at the situation for six months.” Those six months, which run out on 1 March —that is, this Saturday—were used to produce the leaflet I referred to. For all that the hon. Member for Mid Norfolk says about improved efforts, that was the response. It was told that it would have to tell the public about the programme and get the public onside, and the leaflet is what it produced.

This Saturday the records would have started to be uploaded—indeed, there is a suggestion in some minutes from the HSCIC that maternity and children’s care records are already being uploaded. I will have to look at the exact wording of the board minutes, but that is worrying. In three months’ time, all the records would have been in the database and the job would be done, but that was stopped because of the fuss, including in this place. However, the trust is gone. The process was stopped because the public had to be told more, but who in this room feels we have been told more?

Now, the process has been stopped again, and what has the body responsible said publicly? It has not done what the hon. Member for Mid Norfolk did in his speech, in which he gave us some information and set out some starting points for discussion and dialogue to help improve things and to bring people together—I am grateful to him for that. Instead, it has said consistently in all the press releases that it is delaying the scheme so that it can persuade the public how good it is. Perhaps it will send out the hon. Gentleman’s speech. That would do the job, because it was wonderful—I could not fault it, as he told us all the conditions that could be improved.

Members who are not present could put this case better than me. There are genuine worries. We represent people whose records are going into the database without them being aware of what is happening. Questions have been raised by both Government and Opposition Members, and what does the organisation responsible do? It cancels the process for another six months in order to improve a leaflet.

There was a little light earlier this week, with an article in The Times—it was only a short one, but every little bit of light is welcome—saying that the bodies responsible have broadened their approach: they are now aware that there are dangers in pulling all these data together and that the question of security has to be taken more seriously. If that has pushed producing another leaflet to one side, and they are working on that instead, I think the scheme is back on the table. Nobody wants to kill it. I have not met anyone who wants to kill it, or anyone who does not agree that the basis for the scheme is first class. All we want is for our voices to be heard. I represent 60,000-odd people, all of whom have medical records. How could I look one of those people in the eye and say, “I had the chance to stop your private details being attached to your medical records, but sold out?” We have to do something to ensure that security is as good as it can be. It is about trust.

On 15 January this year, my hon. Friend the Member for Newcastle upon Tyne Central (Chi Onwurah) asked a question in the House on this matter, just before the hon. Member for Mid Norfolk. The Minister here today is very good, but in a way I am sorry that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), is otherwise engaged—he is the Minister who gave me a bad time when I raised the same point last week—as he answered the question from my hon. Friend the Member for Newcastle upon Tyne Central. She asked him:

“Has a risk assessment been carried out for the extraction service”—

that is, the extraction of GP records—

“and, if so, will he commit to publishing it and any recommendations made?”

Now that is a perfect question—educated, specific and designed to ease the worries of the general public. What answer did she get? It is parliamentary scrutiny at its best. Asked a specific question, the Minister said:

“We have, of course, constantly assessed it.”

He went on to say:

“I hope the hon. Lady is not criticising the principle of improving and joining up care”.—[Official Report, 14 January 2014; Vol. 573, c. 702-703.]

And there was more of that. Will the Minister tell us—I will be happy if, even with all the resources behind her, she has to answer in writing—whether a risk assessment has been carried out on the extraction service and, if so, will the Secretary of State publish it?

I will say, mischievously, that it does not really matter, because The Daily Telegraph has published extracts of the risk assessment—probably, hysterical extracts—so there is one, and it raises many questions. I do not say that in a hostile way. Thank God somebody who is not a hysterical parliamentarian or a computer whizz but is regarded as sensible has examined the scheme and said that there is a risk. All we wanted was for that to be acknowledged. We simply want a wee bit of movement, to get the maximum possible medical improvement with the minimum of risk to the security of the personal medical records of the general public.

I have a further point about trust—I see you looking at the clock, Mr Bayley, but it is such a pleasure to be serving under your chairmanship that I want to milk every moment. Even this week the Secretary of State was asked a question by the hon. Member for Totnes (Dr Wollaston), who is such a bright and straightforward colleague of the Minister’s in the Conservative party. She asked about those 47 million medical records that were sold to insurance companies, and she was talking about trust—

[Hugh Bayley (in the Chair)]

Order. I am not asking the hon. Gentleman to terminate his speech, but perhaps he would sit down just for a moment. I must vacate the Chair now, and my colleague will take over. We have had plenty of time for two speeches from both sides of the Chamber and they have ranged widely, but two more Members want to catch the Chair’s eye. The wind-ups will start a little before 4 o’clock, so I hope that the three Members concerned will keep an eye on the clock to ensure that everyone has a reasonable opportunity to express their views.

[Mr Mudie]

I apologise, Mr Bayley, and I apologise to my colleagues. I understood that only one other Member was on the speaker’s list.

[Mr David Amess in the Chair]

The hon. Member for Totnes, a Conservative, said:

“Nothing will undermine this valuable project more than a belief that data will be sold to insurance companies, so will he”—

the Secretary of State—

“set out the way in which he will investigate how that sale was allowed to happen and categorically reassure the House that there will be no sale of care data to insurance companies?”

The Secretary of State’s reply was long, but I will give only the first sentence:

“My hon. Friend is absolutely right to raise that issue”.

What issue? She raised two.

He continued:

“I am happy to give that assurance.”— [Official Report, 25 February 2014; Vol. 576, c. 147.]

What assurance was he giving?

May I ask the Minister what the Secretary of State intends to do—I do not need an answer now because the matter is in his head—and whether it will be something disgraceful? The BBC totally ignored the fact that 47 million patient records were sold outside the national health service. The Secretary of State’s colleague, the hon. Member for Totnes, asked him to conduct an investigation and give a specific answer.

The Secretary of State said there would be no sale of care data to insurance companies. That reassurance means nothing because the data will not be sold. There will be an appropriate charge to meet administrative costs. NHS England wanted to give it away for nothing, but the HSCIC said it would charge £1 for each data record to cover its costs. Will care data be moved to insurance companies directly or indirectly? Will the Secretary of State tell us in writing how he will ensure that such data do not land in the hands of insurance companies? He has given one of those assurances, and we will find out which one.

The refusal to acknowledge the security risk is at the heart of the issue. One objection is that all the data will be brought together in databases, whatever the hon. Member for Mid Norfolk says. He will remember that I asked how there could be a guarantee that they will not be breached. What is the answer? I will give the answer. They will be breached.

You may remember, Mr Amess, that a Glasgow man in his 20s breached the Pentagon’s database from his bedroom out of curiosity. The US Government wanted to extradite him to America but we fought against that. I asked the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich, whether he was telling the House that the patient database is more secure than that of the Pentagon? I did not receive an answer, so perhaps the Minister will tell me now, because the Pentagon would like to know.

Will the patient database be more secure than Barclays database, from which the financial records of 27,000 customers were stolen? The computer world says that there is a constant fight to keep databases safe from eastern European countries and there are even cyber attacks in China. But we are being asked to accept that the NHS database will be so secure that it will never be breached.

How do the Government expect to obtain trust if they do not accept that there are limits to security, and that steps should be taken to protect such sensitive data? It is fine for the medical profession to have access to the actual records, because that is what it is interested in, but it is not fine to be able identify individuals. How many people live in one postcode? It could cover a whole street, or a couple of streets. If the age, gender and date of birth were available, it would not be difficult to identify an individual. That is what we are facing, and we want the Government to do something about it.

An extremely worrying suggestion from a good source is that GP databases will be put into a huge centralised database. I have been reliably informed that those databases are not in the GPs’ offices. They do not have separate databases. I have been told that data are sent to three private companies to be stored. I would like some reassurance that that is not so, but if it is the House should be told the basis on which those databases operate, what safeguards exist, and the criteria for the release of those data.

No one in the Chamber would trust the judgment of an organisation that entrusts so much sympathetic and sensitive data to Atos. It is probably deservedly one of the most despised public companies. The fact that it is French does not come into the picture. That does not matter. We laugh, but it is outrageous. It must have been mentioned in every sentence during the debate on welfare benefits. It received millions of pounds from the Government and, if I am charitable, over-extended its remit by putting people off disability benefit in enormous numbers and sometimes tragically. The Government have not sacked it; it decided to walk. However, the Government have now decided that it is such a good firm that the contract for uploading the patient database has been handed to Atos. It is unbelievable. If we are talking about trust, trust implies confidence and judgment—the people we trust must have that—so they have appointed Atos.

I simply say that trust is being lost daily. What we do in the next six months is important. As the hon. Member for Mid Norfolk did, I shall make some suggestions. There must be an urgent and transparent exercise to deal with concerns over security. There must be a streamlined, clear and convenient way to allow people to opt out and there must be massive steps to minimise identifiable data, or data being easily identified to an individual.

It is said that those conditions should be independently scrutinised—that is on the hon. Gentleman’s wish list—by some sort of board. To tie that in with what I said before, I would prefer somebody who has been writing these articles in Computerworld to be on that board. All the things that have happened—I accept that I have taken some time to spell them out—have happened, and trust has been lost. If we are saying that we will get a group of people together and try to bring together the two sides, one way to do it, as we normally do in politics and political life at a lower level, is to have some of the people who are criticising the thing on the board. That would give the public the greatest assurance that this is not a bunch of hand-picked people.

This matter is very important. I am sorry that I have taken so long, and that I am the man who has agreed to work for four days this week and all my colleagues are elsewhere, but there we are.