Oral evidence: Handling of NHS Patient Data, HC 1105Tuesday 8 April 2014

Oral evidence, 8 April 2014.

Witnesses

Kingsley Manning, Chair, Health and Social Care Information Centre and Max Jones, Director of Information Services, Health and Social Care Information Centre gave evidence.

Chair

Good afternoon, gentlemen. I should say that we are expecting a vote on the Floor of the House at 3.30 pm, so when the bells jangle, we shall disappear and then return. Will you introduce yourselves briefly?

Kingsley Manning

I am Kingsley Manning, chair of the Health and Social Care Information Centre.

Max Jones

I’m Max Jones, director of information analytics at the Health and Social Care Information Centre.

Chair

We had a session with you, Mr Jones, and with representatives of NHS England three or four weeks ago, and it was very unclear to the Committee then how the HSC information centre relates to the NHS information centre, the forerunner organisation, with a surprisingly similar sounding name and function. May I ask you to begin by explaining the extent to which HSC information centre has inherited the structures, people and decisions from the NHS information centre, and the extent to which its scope is different from, or the same as, its predecessor organisation?

Kingsley Manning

Certainly. As you know, we were formed on 1 April 2013 under the Health and Social Care Act. I suppose that we have three major and significant components. There was the old NHS information centre, which I will come back to in a second. We also took on board Connecting for Health, which at that point was part of the Department of Health, and we subsequently took on NHS Choices and the implementation teams around the local service providers—this is about the end of the national programme—from the strategic health authorities. To give you a sense of numbers, the NHS information centre employed about 500 people, Connecting for Health employed about 1,350 people, the Local Service Provider (LSP) from strategic health authorities had about 200 people, and NHS Choices was about 150 people. In July of last year with about 2,200 people, of whom 500 were from the NHS information centre. Our broad activities under the Act are to provide information systems, including the physical information systems such as N3, which is the national network—the spine—which is a very key component in running the system for the collection, storage, analysis, dissemination and publication of information across the system as a whole. So we have inherited the duties and responsibilities of the information centre and its 500 people, although they have been rewritten in the Act, but that is one part of what is now an organisation of 2,200 people.

Chair

But have all the functions of the old NHS information centre been carried forward to the HSC information centre?

Kingsley Manning

Yes, although there is an important shift and change, which is that we have an explicit requirement under the 2012 Act to act in the interest of the health and social care system, whereas the health information centre collected information, and disseminated and published it, in pursuit of its function, so we have a much tighter and much more specific remit with respect to the basis of our actions. By the way, it is worth saying that the primary role of the information centre is around, for example, providing national statistics. We publish 400-odd reports a year on health, as well as publishing data sets, including those that we are going to talk about today, so it is a broad range of activities.

Chair

Leaving aside Connecting for Health and the other activities, what we are clearly interested in today is the availability and manipulation of information, and the controls on that manipulation and on access to information. That was previously a function of the NHS information centre and is now a function of the HSC information centre.

Kingsley Manning

It is.

Chair

And there are other activities in your organisation that were not in the NHS information centre. For the purposes of this inquiry into manipulation and controls on access to data, that was a function of the old information centre and it is a function of the new information centre.

Kingsley Manning

Yes.

Chair

So the next question is: what changes have been made in the governance between the old information centre and the new one, or are they, although under different statutes, for practical purposes very similar?

Kingsley Manning

I think, in practical circumstances, they are very similar, but the functional definition of what we are required to take note of has changed.

Chair

You said that the new law required you to focus on the system, but it was not clear to me what the old law was.

Max Jones

Perhaps I can quote from the original 2005 health and social care information centre directions. The document lists some generalised functions for the old IC, but it specifically states that it may exercise functions to do anything whatsoever “which is calculated to facilitate, or is conducive or incidental to, the discharge” of the centre’s functions. That is in contrast to the equivalent clause under the 2012 Act, which forces us to take account of being in the interests of the English health and adult social care system. It shifts the focus to the purpose being for the benefit of the system as opposed to being for the benefit of the organisation.

Chair

All right, but beyond that, there was no substantial change in the legislative formula for the information centre.

Max Jones

There was a significant expansion of many of the features that were outlined in relatively little detail in the 2005 Act, but were expressly stated in many of the clauses under the 2012 Act.

Chair

In terms of governance, there are 500 people in the new organisation who were inherited, by and large, from the old organisation, presumably.

Kingsley Manning

Just for completeness, the NHS information centre was a special health authority. We are clearly an arm’s length body of the Department of Health, so there was a governance structure.

Chair

But what patients or the policy community look to the information centre to deliver is access to information, perhaps subject to proper safeguards. The old information centre made, and the new one makes, decisions about that. The formulations have changed, but the basic approach has not.

Kingsley Manning

We would argue that, because of a series of contextual factors, if you like, the overall approach has changed. We have changed it by taking a different, more robust approach. When I became chairman last June, it was clear that the approaches that had been adopted by the information centre were no longer entirely appropriate, given both the degree of data we were able to collect and a change in public expectations. It was also clear that some of the processes that the previous information centre had been operating were not as transparent or as consumer-friendly, if you like.

Chair

Well, now we are getting somewhere. What irritated some of us in the previous hearing was that, on more than one occasion, the answer offered to the question, “What are the controls around access to information?” was, “That was a decision taken by the previous organisation.” But actually, from the beginning of the old information centre, which I think was in 2005, it seems that, if we are going to develop broad confidence in the security around the handling of information, the narrative—to use that over-used word—that you were just suggesting, Mr Manning, was, “What used to be was not right, and we have taken a series of steps to tighten it up.” That is different from saying, “It has nothing to do with us, guv.”

Kingsley Manning

I agree entirely. As you know, we are undertaking a review to look all the releases by the IC. Our initial trawl suggests that it was acting in a completely proper process, but it was in the context of the time and of the rules as they were then. I simply felt—I think our colleagues on the board feel—that times have moved on. The security threat and the volume of data are much greater, and the public’s confidence in public bodies to handle data—not just us, but across the whole public sector—has significantly changed. The processes that were run by the IC were proper in their time, but trying to define the difference between the Data Access Advisory Group (DAGG), Independent Advisory Group (IAG), Confidentiality Advisory Group (CAG) and Independent Information Governance Oversight Panel (IIGOP)—I will come back to all those acronyms later—is very difficult indeed. We did not have processes that were, as I said, consumer or citizen-friendly, and that was what our intent was from the start.

Valerie Vaz

Can I ask you quickly about the licences under the old system? Have they ended?

Kingsley Manning

You mean the agreements on data sharing?

Valerie Vaz

Yes.

Kingsley Manning

This will be confirmed in Nick Partridge’s review, which we will publish at the end of May, so the figures may slightly change, but I will give you what we know about it at the moment. We think that, as of April 2013, there were 249 agreements issued by the NHS Information Centre. Just to remind you—I am terribly sorry; this is overwhelmingly complicated—those data-sharing agreements applied to where we are issuing pseudonymised or identifiable data. This is where there is a theoretical risk of identification, so that is where we have data-sharing or data-reuse agreements in place. There were 249 in April that had been issued by the NHS IC of which, in April this year, there remain 112, so they are running off as we go forward.

Valerie Vaz

So there is an end date. Can you publish who has them?

Kingsley Manning

We will be doing so at the end of May. By the way, so that you can be clear about this, of the 112 that still have data-sharing agreements with us, none of them received any data during this year. What those data-sharing agreements will do is to cover the data that they were issued with during the period of the NHS IC, and we will ensure that they are still bound by the same requirements that were issued by the information centre at that point.

Barbara Keeley

I will ask a more detailed question about those shortly, but can we just go back to this NHS IC and the HSCIC, because there has been some confusion, which I have commented on in the Chamber? At the end of the previous session, Max Jones was asked by a Member who is not here about staff and decision makers transferring across. She specifically asked if some of the people who had been decision makers in the NHS IC were now decision makers in the HSCIC. You said: “the very senior management in the HSCIC is not the same as the very senior management that was in the IC.” That does not seem to me to be true, because I then had an answer from the Minister that three of the non-executive directors and two of the executive directors were previously members of the NHS information centre, including Dr Mark Davies, who had been in both organisations and who last year, and until recently, was chair of the DAAG. How did you come to make that comment? You have since written to us about it, and I have to say that I am not happy with your letter.

Max Jones

I did write to the Committee. In that previous discussion, we were talking about the senior management who had responsibility for decisions and accountability for decisions on data sharing. At the time of the Committee, the executives with responsibility for that were myself for data and information services and Rob Shaw—

Barbara Keeley

No, can I take you back to what you said? You said: “the very senior management in the HSCIC is not the same as the very senior management that was in the IC.” That does not seem to me to be true. Dr Mark Davies was a very senior manager, wasn’t he?

Max Jones

What I was attempting to say at that time was that if you looked at the very senior management of the old IC and the very senior management of the HSCIC, they are not the same. Specifically, in the area of data access and control, myself and Rob Shaw were the two executives with the responsibility and accountability for data and information sharing and Senior Information Risk Officer (SIRO) responsibility. At the time of the previous hearing, Mark Davies had attended his last DAAG meeting and was not the chair of DAAG for the meeting that took place two days later.

Barbara Keeley

The Member was not asking you about that day of the hearing; she was actually referring back to the releases to insurance companies—that was what we had been talking about. We had been following a track of questions about who had been responsible for data releases in the past. For many months, since he transferred across from the NHS information centre, Dr Mark Davies was chair of the DAAG and in that senior position.

Max Jones

Exactly, yes.

Barbara Keeley

In terms of data sharing, I understand that he went on the trip to the United States with the Secretary of State and was there when they signed the memorandum of understanding. He was clearly a very senior manager in that organisation.

Max Jones

But not at the time of the hearing when I made my statement.

Barbara Keeley

He was. It was 25 March.

Max Jones

He was not the chair of DAAG and he was not the senior information risk owner, who is the accountable member of the board with responsibility for signing off data-sharing contracts.

Barbara Keeley

I am afraid that is not satisfactory. The Member was trying to get a broad understanding of the people who were decision makers in both, because what was happening in that meeting was that a lot of wriggling was going on—

Rosie Cooper

There still is!

Barbara Keeley

There was a lot of saying, “It’s nothing to do with us, guv; this all happened in the past.” You answered the question in that way when this person was a very senior manager, to the extent that he accompanied the Secretary of State on a trip to the United States to sign a data-sharing memorandum of understanding, and, to me, it is astonishing that you should say that the person who had been the chair of the DAAG did not have that responsibility and that you are still wriggling to try to get out of that now. I am not happy with that answer, Chair; I just do not think that is acceptable.

Kingsley Manning

I am sorry. We are trying to be as transparent as possible.

Barbara Keeley

I don’t think so. I really don’t think so.

Kingsley Manning

May I just talk you through the history of this so that you can get a sense of it? When I was appointed on 3 June last year, I was the only director who was not an interim appointment. All the senior management and all the directors were interim directors. We therefore had a major transformation to undertake. Part of that was reorganisation of the management team and we took the view early on that the current management of the data-sharing arrangements and Information Governance (IG) functions needed to be changed. That is why we made Rob Shaw, who had worked for Connecting for Health previously, not the IC, the Senior Information Risk Officer (SIRO)—senior information responsible officer—and we made Max responsible for the data functions. So we changed dramatically, and that was undertaken in September. At that point, we knew that Dr Davies was redundant. He had been made redundant on the abolition of the information centre, and we put in place a plan to deal with that. He was in post. We were not in a position—

Barbara Keeley

Sorry—you had a plan to make him redundant last year?

Kingsley Manning

No, no. He was made redundant by virtue of the abolition of the NHS IC. It was not our decision.

Barbara Keeley

So you kept him on for eight or nine months?

Kingsley Manning

We kept him on because we needed to have cover on clinical governance and on clinical advice.

Barbara Keeley

In fact, he was a very senior manager, and he did accompany the Secretary of State on the visit when they shared the memorandum of understanding. And—

Kingsley Manning

He did. I was there also.

Barbara Keeley

Let me say a bit more. This is the person that you were making redundant, but you let him chair the DAAG, and he made a number of controversial decisions, including the decision out of committee to release the sensitive medical records of individual teenagers—

Kingsley Manning

I am sorry; that is not true, I am afraid.

Barbara Keeley

It was reported to be true—

Kingsley Manning

I think you are referring to the fact that he was asked to give advice by the Cabinet Office. He had actually worked for the Cabinet Office on the matter. He gave advice on the consent model that they were going to use. We never released any data and we have not been asked for any data by the Cabinet Office on this matter.

Barbara Keeley

This was reported last summer by The Guardian newspaper that the sensitive medical records of teenagers on the National Citizen Service were released. That was apparently “an out-of-committee decision” by the chair. Dr Mark Davies was allowed to make decisions out of committee as the chair, and that decision was apparently taken last summer.

Max Jones

I can clarify that Mark Davies did provide advice, as is one of DAAG’s functions, on the consent model, which was being considered by the Cabinet Office, but we have not received a request for that data, nor have we provided any data. The discussion that Mark had was referenced and recorded in the January—I think it was January; I’ll check in a minute—DAAG minutes.

Barbara Keeley

At least six months after the discussions took place.

Max Jones

That may be the case.

Barbara Keeley

So this is the person that you are going to make redundant—

Max Jones

No data was requested nor shared. Advice was requested on the consent model, which was given.

Barbara Keeley

What was requested was linkage of data, wasn’t it? It was linkage to medical data.

Kingsley Manning

No, he was asked by the Cabinet Office to give professional advice on the consent model they were considering. He gave that advice, which was a perfectly sensible thing for him to do. That was the end of the matter.

Max Jones

And that was recorded in the minutes of DAAG held—

Barbara Keeley

Yes, I have a copy of that in front of me. You talked earlier, and it is quite important, about transparency. To have recorded this six months after it happened and to then be trying to change something—I am not aware that The Guardian was challenged on the fact that data had been released. It seems there is a very hurried after-the-event style of things happening here, and that is not good for transparency. This is being talked about quite a bit. People’s confidence in what you do has been really undermined by this and the fact that there could have been any suggestion of linkage to medical records for those people taking part in the National Citizen Service. For heaven’s sake, there are all kinds of undertakings made to them as they sign up to that service, and quite rightly. They even have an opt-in for their personal data, so to even consider that, and not to have documented what was happening until six months after the event, just makes you look shady.

Kingsley Manning

I agree, but we did not have a data request. I absolutely agree, by the way, with your essential point, which is the sensitivity of linking these data in any way with receipt of data—benefits and all the rest of it. One of the things I noted in our press release last week was that we welcome the proposition under the Care Bill amendment that will bring Confidentiality Advisory Group (CAG)—the confidential advisory group—into this. One of the areas that we think they should look at is indeed the extent to which we share or should share data with other Government bodies. This is an area where there is a lack of clarity and a great deal of sensitivity. We know from our research, by the way, that one area where we have absolute sensitivity is in this. People are very, very worried about the use of their medical records in any way that might have an impact on their tax returns, their benefits payments, their housing, or any of these things. This is where we would very much welcome the advice of Parliament and CAG—the extent to which this is possible. At the moment, as you know, we have not released any data to DWP or any such body but we absolutely recognise that it is a key issue.

Rosie Cooper

Commercially, people have got that information. There are DVDs out there with all that information on, yes?

Kingsley Manning

Sorry, what information?

Rosie Cooper

You provided DVDs to external customers. I am sorry, but somebody else will ask you about that. There is information out there. We had an evidence session; well, I don’t suppose you would describe it as an evidence session, it was more a tutorial. I asked one of the people present whether he could locate my medical records. He said it would be illegal for him to do so but that if we got permission he would do it immediately. He was not making it up. He said he could identify all of us. I asked whether he could identify the Prime Minister’s and he said he could do so within five minutes.

Kingsley Manning

It is difficult to comment on this. First of all, we have gone through in great detail the process of releasing the data that we have been responsible for and we will follow that up with the data that are released under sensitive data. As you are aware, we release as part of the open data agenda a very large amount of anonymised data where it would be impossible to do that. The use of, or any attempt to use, any of the data we issue which is pseudo-anonymised data for the purpose you suggest would be clearly in breach of the law and would potentially be liable for a £500,000 fine.

Rosie Cooper

And if I am a big pharmaceutical company that’s going to worry me, is it?

Kingsley Manning

Yes, I think it absolutely would.

Rosie Cooper

Oh, rubbish! Where we need to get to you backing this up by saying, “If you’re a chief executive and anybody in your organisation misuses the information, then you should be liable for a prison sentence.” Until you do that, saying “We are going to fine you” is a load of old rubbish. If I were you, I would be ashamed to be chair of an organisation that even potentially allowed that to happen.

Kingsley Manning

The power to put people in prison is way beyond my pay grade—

Rosie Cooper

Absolutely. But while you sit there comfortably thinking that everyone is going to be good because we are going to fine them threepence—rubbish.

Kingsley Manning

We are absolutely servants of Parliament on this. If Parliament wants to change the regulations with regard to the release of data, we will clearly be happy to do so. We have put in place the safeguards and the processes that fulfil and meet our obligations. We have no record and we would be very happy to meet anybody who has evidence of people who have identified individuals using pseudo-anonymised data.

Rosie Cooper

My colleagues are here. I can categorically assure you that, providing we could give indemnity, there was a person who came here who said they could do it in minutes. Is that not right? Is it true or not?

Chair

It was what he said, Rosie. The Committee is also used to people saying things and expressing opinions as well as facts.

Rosie Cooper

Well why don’t we demonstrate it? How do I get permission to identify—

Chair

I think that is a question for the Clerk rather than the witnesses.

Valerie Vaz

You have obviously gathered from the number of sessions, Mr Manning—you were not here at the first session when we had Mr Kelsey, who does not appear to be here today. I don’t think he was invited. But you wrote to us, Mr Jones, with Mr Kelsey. Following on from my colleagues, we are not quite sure that the answers are very helpful. Could you turn to the letter and I will ask you for some information? This is very concerning and I hope this will be published on someone’s website—either yours or certainly the Health Committee’s website—so that people can see some of these answers and follow them up. The first is on the copyright on data used in the Institute and Faculty of Actuaries report. It is sad in some ways that it is going to be public but it looks like you don’t know what you are doing. A logo has been used and you didn’t know it was going to be used. Do you want to look at the answer?

Max Jones

Yes, I am just trying to locate that. I am aware of the answer that we gave. The organisation used our logo without coming to us to seek our permission to do so. They were entitled to have access to that data under the agreement which they had which was granted by our predecessor organisation. Under the terms of that agreement they were required to show a copyright statement in their publications.

Valerie Vaz

This is the difficulty, isn’t it? You say you didn’t know, but if there were proper procedures in place, they would know that they had to ask you, wouldn’t they?

Kingsley Manning

Under the data-sharing agreement, they should have done.

Valerie Vaz

Right, okay. Where is it? Is it in there? Is it in the data-sharing agreement that they should ask your permission?

Kingsley Manning

We are happy to share the data-sharing agreement with you.

Valerie Vaz

Is it in it, or not?

Max Jones

I don’t know. I am not particularly—

Valerie Vaz

I think this is what we are trying to say. [Interruption.] Hang on a second. You come before us. We have been elected by the public and are here to hold you to account. When things go wrong, as they appear to have done, we are entitled to ask you questions. I am absolutely appalled. I think the majority of us are, which is why you are back here again to try to work out why you don’t know what is going on in your organisation. This is a simple thing. It is either in the agreement, or it is not. They either have to ask your permission, or not; they cannot just use it. You have made it clear here that you don’t know. Is that right or wrong?

Max Jones

Well, they have to include a copyright statement.

Valerie Vaz

But you don’t know, because you said it in your answer.

Kingsley Manning

They are required to do so and they—

Valerie Vaz

And they didn’t. So, what have you said to them?

Kingsley Manning

They are required to use a copyright statement, and they clearly used the current logo when they should have used the previous one.

Valerie Vaz

Right, so people are going round doing things as they wish, without checking with you.

Max Jones

I don’t think you can equate which particular image and logo an organisation uses with the risk—

Valerie Vaz

Well, it is a stamp of approval. That is the key thing, isn’t it? It is your stamp of approval. You are taking people’s data, and they are being used in a certain way. That is the stamp of approval. What the public and we all expect is that there are proper procedures to ensure that the release of data is adequate and has proper protection. That is the point, isn’t it?

Max Jones

I think the public have a right to expect to see us do things that will encourage their confidence and help transparency. I can see that, in this case, this discussion does not enhance confidence in this area.

Valerie Vaz

Right, and this is what our job is, to do that.

Max Jones

Nor are we saying that, in this particular case, any data have been released in an untoward or illegal fashion, or that patient confidentiality has been threatened.

Rosie Cooper

Have you got a clue?

Valerie Vaz

On the Institute and Faculty of Actuaries, you mentioned that you are an arm’s length body, but how do you allow a Minister to go into the Chamber to make a statement that is wrong, and then she has to—[Interruption.] Oh, you don’t know. You are actually mentioned in her statement and her letter. Do you not know about what the Public Health Minister wrote to the Chair of the Committee on 3 March?

Max Jones

I don’t think I am sighted on that.

Valerie Vaz

You are. She said: “I was made aware on Friday 28 February that the information I had on hand during the debate did not include the latest clarification received from the Health and Social Care Information Centre”. That’s you, isn’t it: HSCIC?

Max Jones

It is.

Valerie Vaz

Right. She continues: “I therefore wrote to you on Friday to inform you of this and to seek your steer on how best to correct the statement that I made in the debate.” You don’t know any of this?

Max Jones

This isn’t ringing any bells.

Valerie Vaz

This is about your organisation. The Minister has gone into the Chamber. The Minister says: “The correct position was that the Faculty requested pseudonymised information…said they would publish this only as anonymous information, with all identifiers stripped out.” I could go on: “In handling this request, the NHS Information Centre”—the predecessor organisation—“did not treat this as a request for sensitive information.” I think you should have a look at this.

Max Jones

We are happy to do that and come back with a note to the Committee.

Valerie Vaz

Just to help me with the governance relationship and the accountability between yourselves and the Department of Health and the Minister, you don’t know that a debate is going on about care.data and information that discusses you. When there are questions coming in, do you answer them? Does the Minister ask you for information?

Kingsley Manning

We get regular requests from the Department of Health. We are not privy to ministerial statements before they occur.

Valerie Vaz

I am not talking about ministerial statements; I am talking information and facts.

Kingsley Manning

We will respond clearly to anybody who asks us for that information, including the Department of Health.

Valerie Vaz

Right. So you sit in your organisation and kind of have your own governance, but you don’t have any link to the Department of Health or the Secretary of State.

Kingsley Manning

We meet through a process of accountability through the sponsor Department. We do that periodically and, on a number of things, we work closely with them, but we are an Executive agency and an arm’s length body, and we do not have a day-to-day presence from the Department of Health in our offices. There is no necessity for it to have discussed this with us before it published it.

Valerie Vaz

Well, there is, because normally in the civil service, when there is a debate about something, civil servants will prepare a report, and find out the information and give it to the Minister, so that the Minister tells Parliament the correct position. That is not happening here, is it? A Minister can go into the Chamber and say something that is totally wrong and it does not really matter, does it—to you?

Kingsley Manning

I think it matters enormously.

Valerie Vaz

So what are you doing? I am staggered that you don’t know that this has happened. You do not know that a Minister has made an incorrect statement in the Chamber and has had to write to the Chair of the Committee.

Kingsley Manning

I am sorry. I was aware that it had been corrected by the Department. As far as I was concerned, we were not aware of the original statement and we were not asked to prepare it. We are not asked to prepare ministerial statements.

Valerie Vaz

So this is where I say that the governance and the accountability are falling down. You can stand behind being an arm’s length body, but you are operating separately with no accountability.

Kingsley Manning

We are accountable—

Valerie Vaz

You keep frowning, but I am trying to paint the picture for you. I know you have come from an organisation outside the civil service and you do not understand the public interest. I know you don’t—you can’t possibly from years and years of people being in the civil service. You are there as an arm’s length body to do what it is you like and forget about what happens to Ministers and the general public.

Kingsley Manning

I understand that you may not appreciate the current structure of the accountable bodies. We have an accountable officer in the chief executive, who is ultimately accountable to the PAC. We have an accountable relationship with our sponsor branch within the Department of Health, which results in us having a formal monthly meeting. I meet the permanent secretary on a monthly basis. That is the nature of an arm’s length body. We are accountable, then, through our attempt to be as transparent as possible to the public and Parliament.

Valerie Vaz

Our concerns are that you have got people’s public data—people’s absolutely important information about every single aspect of their lives. You have that, and you are an arm’s length body, and that is what concerns everyone. There is no accountability.

Kingsley Manning

Hang on a second. We are accountable, as I said, to the Department and to Parliament. We are here being held accountable. We are also governed—

Valerie Vaz

I don’t think you are here being held accountable. We have asked you to come back because we were unhappy about some of the answers you gave—about the shambles of the organisation.

Kingsley Manning

It is not a shambles of an organisation.

Valerie Vaz

It is. I haven’t finished; I can go on.

Kingsley Manning

May I just say that we are delighted to be here? As the Chair will tell you, I visited him in January asking to come and talk to you about the work of our organisation and to discuss with you our activities with the release of data.

Valerie Vaz

With the greatest respect, we do not want to talk to you or discuss; we want to ask you questions and we expect answers. If you had been here at the previous hearing, you would know that to every question we asked—basic questions asking for basic information about how an organisation is run—the answers were not available, hence this letter, and if you read this letter, it does not even say yes or no—it does not even answer the questions properly.

Barbara Keeley

There is some detail on this that I think is quite important. Part of the difficulty in media and the social media is that there is a real difference from your pronouncements of what you say is the situation with data and what the people out there—commercial organisations that have Hospital Episode Statistics (HES) data and already have large databases—are saying. If we go back to the insurance actuaries—the Staple Inn Actuarial Society—these comments are from the report that it produced on the use of 188 million records taken from HES. It talked about the data as being “highly detailed”. We get an answer back saying that the data are in aggregated and anonymised form. Don’t forget that the HES database started off as an admin database for handling payments and information about patients. It was never set up to feed into the insurance industry, was it? After it had run all the things that it wanted for commercial reasons against hospital data, it said that HESID “does allow all periods of care for” a patient “to be identified and linked”. It lays out all the specific details there are in individual records: clinical information; demographic information, such as age and gender; dates of admission and discharge from hospital; location of treatment; and the area where the patient lives. In fact, it says that the data contained 47.5 million “unique HESIDs…compared to the English population” of 49 million. That is a very close echo of one for one in the records. It is not the only one that says that sort of thing about this. Harvey Walsh has been running a database and says that it provides NHS data to the pharmaceutical industry. There was the issue a few weeks ago with the tool by the firm OmegaSolver, and there has been the issue about PA Consulting putting up all that massive 13 years of hospital episode data on to Google servers on the cloud and real worries about security there. All these people do not say that they have aggregated anonymised data; they say they have very detailed information. It comes back to the point that my colleague was making. What specialists are saying to us again and again is that it is possible to re-identify people. In fact, Dr Mark Davies said a couple of months ago, I think, that there is a small risk that if you have enough data, you can re-identify patients. We have examples given to us in the House. An MP has had his nose broken five times and thinks that, in terms of his hospital records, it makes him a person who stands out. There are individuals in public life who have had well-publicised operations, incidents and accidents, about whom there will be a lot of data. What I read out to you that the Staple Inn Actuarial Society said is very detailed information. Yet you have given answers to Ministers that they have used—and which my colleague was talking about a few minutes ago—which make it seem as though this is not data of that type. The users are saying that the data is highly detailed: “We can build up an individual’s medical history across all episodes and we can link all their diseases”. That is what the data users are saying. So for a couple of thousand pounds you—or rather your predecessor—have put out 188 million records. This is being reported and commented on, and it is making people feel undermined. You and Ministers are saying one thing, but the information out there is totally different from that. It looks very detailed. I have seen screen grabs from the patient analyser tool showing that very detailed picture. It almost feels possible to identify a person: when they were admitted to hospital, where they live, their age band and gender. It is very detailed information. Why this difference between a pretence that this is all aggregated and analysed—

Kingsley Manning

I am sorry, but we do not pretend that these are aggregated data.

Barbara Keeley

We were told in a seminar—and people outside here are saying—that it is possible to re-identify individuals on this data. We will come on to pseudonymisation—

Kingsley Manning

I am sorry, but you are talking about pseudonymised data, I am afraid.

Barbara Keeley

We need to know what is out there now. There is a very strong feeling—I subscribe to it—that this data is not protected enough and has been let go. It is out there. You mentioned that there were 249 commercial reuse licences, of which 112 are left, but some of the ones I mentioned are also selling it on to other people. We have had lots of examples.

Kingsley Manning

If they have a data reuse agreement, it is perfectly legal for them to do so.

Barbara Keeley

Okay. It may be that you have totally lost control of the data that has already gone. It is out there; it is in the cloud and it is being used on different forms of computer.

Kingsley Manning

Thank you for your explanation of that. We are required under the Health and Social Care Act to publish certain data and we are required to disseminate data—that is actually one of our functions. We do so in a manner that is in accordance with the regulations in the law, and overseen by the Information Commissioner.

Rosie Cooper

I have just written to him.

Kingsley Manning

We cannot make up the law as we go along. We act within the regulations and the law as it is. We accept—we are entirely straight about this—that there is a theoretical risk of re-identifying a small amount of pseudonymised data that we put out, but it would be illegal to do so. We have no examples of where it has been done, but I would be delighted to meet the individual who says they can do it. It is a theoretical possibility.

Barbara Keeley

But in fact—

Kingsley Manning

The detail of the data is, if I may—

Barbara Keeley

Can you just stop at that point, because you should almost say “yet”? The feeling we got in our seminar was that you have no instances of that happening “yet”.

Kingsley Manning

Oh, we are very concerned about that.

Barbara Keeley

It would be fair at this point, given what I have just said and the picture I have drawn, for you to admit that you have lost control of the data that has already gone out of the NHS—it is gone! You have had these 249 commercial reuse licences. Some of these people not just have the data for themselves, but are supplying it to others in the industry that they serve.

Kingsley Manning

And if they have a reuse agreement, it is legal for them to do so.

Barbara Keeley

Whether or not it should have been, some people—I know you are looking into this—have then loaded that very large amount of data that belongs to every patient in this country, or should do, on to Google servers. You can form your own opinion of how secure that is. This data has gone. You are not controlling that data at all.

Kingsley Manning

We control the process of release. In the register we published this week, we gave details of the legal basis for doing so. We have done so in accordance with the regulations and the law as it stands at the moment. We have put in place a series of data-sharing agreements and reuse agreements that are overseen by the Information Commissioner’s Office (ICO) and the regulations that make it illegal to re-identify anybody, even if the theoretical possibility exists, and require the use of the data to be clearly stated—there has to be a proper purpose for that—and for it to be destroyed once it is used. There is no question but that this data is immensely rich and allows you to look in great detail across the health and social care systems. That is one of its great asset values for the health and care system as a totality.

Barbara Keeley

But stop on the proper purpose because it is quite easy to see, and since you released the register the other day there are a number of examples given of companies. A lot of these are market-based ideas; they are not really driven by health benefits to the patient. One of the companies said that its usage was to examine the UK uterine fibroid market—the word was “market”. I quoted an example to the Minister in a recent debate I had of a company that was comparing prices and performance between consultants in a kind of GoCompare-type comparator of pricing per consultant. The DAAG released consultant data—sensitive data—to that last year. When you say “proper”, are you just including market uses? Is it any market use?

Kingsley Manning

The regulations as they stand at the moment do not allow us to make that type of judgment—[Laughter.] I am terribly sorry; you may find that amusing. The amendments to the Care Bill will enable us to ask CAG. I have already said in public that we would welcome the advice of CAG on these types of releases.

Barbara Keeley

But you have already made them.

Kingsley Manning

I appreciate that. We operate according to the Act as it has been passed. We make decisions on the basis of the current regulations. It is not our job to make a judgment on whether we agree or disagree with the nature of a commercial organisation. That is not a criterion on which we act.

Barbara Keeley

So you are prepared to release even sensitive data out to organisations that just want to do a price comparison website on different pay procedures between different hospital consultants. That was what you did.

Kingsley Manning

I am terribly sorry, but we are bound by the law and the regulations. Under the current regulations that is perfectly legal and legitimate. Indeed, it is arguable that it is a benefit to the health and social care system as a totality. That is an argument that you, Parliament and the public will have to consider. Whether there are real advantages in having efficient and effective suppliers such as Baxter or any of these other companies, and whether you want pharmaceutical companies to use the data to develop new drugs or services, are decisions that you have to make.

Barbara Keeley

But entirely commercial uses such as the insurance use and the price comparison use are two things. The third area of concern I have is that you don’t control who the end user is. All those companies that advertise their services just to an industry like Harvey Walsh and some of the others are just selling on—

Kingsley Manning

They have to have a specific agreement to be able to do that, and that requires them to take appropriate steps to safeguard the data.

Barbara Keeley

So have you got the information because I have asked for it twice, but not been given it? For all those 249 organisations with a commercial reuse licence, can we know who all the end users of our data are?

Kingsley Manning

No, because they are using it and putting it into additional services. So, for example, a company such as McKinsey or KPMG would have used it to support Monitor or the NHS TDA in advising on the transformation of health care services.

Barbara Keeley

All commercial clients.

Kingsley Manning

Commercial clients, but it is worth making the point that they were a significant minority. The majority of the people we released data to were part of the NHS and the public sector.

Barbara Keeley

What we are talking about is audit. Can you audit? There are apparently going to be audits. Can you audit all the data releases? Can you say for all the HES data where it has gone, who is using it and for what?

Kingsley Manning

No. And, indeed, in terms of the anonymised data, which we make freely available on our website—

Barbara Keeley

I am not talking about anonymised data; I am talking about HES.

Kingsley Manning

We are being specific. Pseudonymised data, in terms of the Data Protection Act, is treated as being anonymised; it cannot be identified.

Rosie Cooper

But it is not the same—that is playing with words. When you issue pseudonymised data, I am not as protected as when you issue anonymised data. A drug company wrote to ask me to get involved in a trial because I have got a dodgy knee—how does that work? They know who I am, but does that qualify as anonymised? I have asked the data commissioner to look at that. This is sad, because huge health benefits could be derived from this. You talk about having permission for this or that, but, from the performance of the last team and what we are hearing today, the big message out there is that you have not got my permission or that of the Great British public. Not all of them actually received your letter. You have not got their permission to give their information out freely. The message is: if you want to protect yourselves from a bunch of clowns, you need to ensure that you opt out tomorrow—how sad is that? You are behaving like a group of people who have not got a clue. You can argue and pirouette on the head of a pin, but you have not really answered Barbara’s questions satisfactorily. Can I ask you a question? When did you know that your logo was being misused?

Max Jones

I will have to come back to you with the exact date.

Mr Sharma

You must have some idea—whether it was a year ago, two years ago or two months ago. You cannot just say that you will come back to us.

Max Jones

It was not long before our previous Health Committee appearance. I will need to come back you with the date, but it—

Rosie Cooper

And what did you do—

Mr Sharma

I am sorry but, just to follow up, the misuse of that logo was an important incident, but you do not have an idea of when it happened.

Max Jones

I cannot here today give you the exact date—

Mr Sharma

We are not asking whether it was 7 April or 8 April, but you must know about which period you found out.

Max Jones

I would say it was within a week of our last appearance at the last Health Committee, so that would be around the middle of February 2014.

Rosie Cooper

Okay. So what did you do immediately after you found out?

Max Jones

I asked the team to investigate and come back to me with further details.

Kingsley Manning

And we are in the process of doing that.

Max Jones

And, in fact, we are doing exactly the same thing—

Rosie Cooper

You say “we are in the process of doing that”, but the misuse of the logo happened in February. Did you tell them to take it off their website immediately and say, “You don’t have our permission”? Forgive me—I can only be rude—but you are behaving like this is all happening outwith you: that these things are happening, you are doing your best and it is all okay; but it is not. And then you are telling me that you are safe to use the medical records. You have already messed up and misused the hospital records, and now you want GP records. This is nonsense. If you can’t get a grip, you can’t ask the public to trust you any further. It is absolute rubbish.

Chair

Would you like to respond to that?

Kingsley Manning

Are we going to have a question?

Rosie Cooper

Yes: why should we trust you when you haven’t got a clue?

Kingsley Manning

Well, you can trust us because, I think, first we have a world-class record in keeping data securely. There has been only one major breach with loss of HES data since 2009 and that was, in fact, in north-west London. We have a world-class record on providing data to support research. We have—

Mr Sharma

Sorry to interrupt, but you said about 15 minutes ago that you had no clue who was using your database.

Rosie Cooper

Where is the data going and who has got it?

Mr Sharma

You said earlier on, in response to one of my colleagues, that you had no idea who is using it.

Kingsley Manning

I was making a distinction. On our widespread publication of anonymised data, for example, last week we published on our website the prescribing data for December at GP level. That is freely available to anybody who wants to use it. We make no constraint on that; as part of our open data agenda, we are committed to make that available to whoever wants to use it. The same applies to about 400 other data sets—

Barbara Keeley

I stopped you earlier, though, because we are not concerned with the generalised data; we are talking about—

Kingsley Manning

Yes, but may I answer the point? That is overwhelmingly the amount of data that is made available.

Barbara Keeley

That was not what I was asking about.

Kingsley Manning

I realise that, and may I come back to that? That is why, specifically with regard to the sets of data that are covered by data-sharing agreements, I took the view that the process that we inherited was no longer robust. We have therefore been in the process of changing the management and the processes, and we have voluntarily adopted a process of being much more transparent about the process and about the data releases we have made.

Barbara Keeley

But what I was trying to get to was the concern. We are just looking for transparency and honesty here. On all the data that was previously released through these commercial reuse licences where there are end users—the question that the Committee wanted to put to you—you are unable to say what are the uses to which the data release under those licences may be put, what controls are in place and what information is provided—you don’t know. With the whole 13 years of the HES database and however many million records have gone out to one of these providers that then provides on to others—in the United States, this has involved putting up the data on Google cloud, and we are not sure of the security of that—you can’t say. You should admit it now. If you can’t tell us where all that data is and what all its uses are, it seems you can’t. You have already admitted that entirely commercial market uses—

Kingsley Manning

The control is through both the overriding regulations established within the Data Protection Act and the data-sharing agreements that we enter into with people, which specifically allow the reuse of data with safeguards with regard to anonymity.

Barbara Keeley

So you have no idea who the end user is. You have no idea if they are using it properly because there is no audit.

Kingsley Manning

And that is in accordance with the law and the regulations as they stand today.

Barbara Keeley

So, just to be clear, audit is not going to be possible for all the uses and all the end users. The data is out there. You have licensed people to use it and other people to buy it, and there is no control over that—it is just out there.

Kingsley Manning

I don’t accept there is no control. There is control established in accordance with law and the regulations as they are today.

Barbara Keeley

But you are not able to say who is using it and for what reason. You are not able to say that. There are end users out there.

Kingsley Manning

No, because we have a large range of organisations that we have been encouraging. Government policy has for a long time been to encourage the use of this data to advance both the health and social care system in this country and the economy. If, for example, we supply pseudonymised data to a drug company to help it to develop a new drug, we do not know the end users beyond that organisation, but that is perceived as being a task and a function that we have. It is done in such a manner that the data is safe and secure, and is not identifiable back to an individual. You may wish to change the base upon which we act. We absolutely welcome the suggestion that we should submit these to the confidentiality advisory group. We have identified a number of cases where we think its guidance would be very helpful, including in this area. We would absolutely welcome that, but I am afraid we cannot make up the rules that we act by.

Chair

On that note, we need to go and vote. We shall be back in a quarter of an hour. Sitting suspended for a Division in the House. On resuming—

Chair

Let’s restart. I would like to put a different framework around the discussion. The introduction of care.data has been delayed by six months. The discussion that we have had so far this afternoon does not give me huge confidence that we are not going to be back having a discussion in September similar to the one we had six weeks ago. What are you doing to use the time between now and September to ensure that we do not simply have a rerun of the discussion we had six weeks ago, that we can be confident that the proper safeguards will exist and be applied, and that the public can be confident about those safeguards, when we come to the end of the delay period?

Kingsley Manning

With regard to care.data, it is perhaps worth pointing out that this is an NHS England programme, of which we are a supporter. The senior responsible officer is Tim Kelsey. I am happy to talk about what our role and function in that is, but I am not in a position to answer all your questions about the care.data programme; you need to address those to NHS England. However, I am happy to tell you what our role is.

Chair

Go on then.

Kingsley Manning

We have essentially four roles in this. The first is to provide the technology framework to do it for the extraction and collection of the data. We have already implemented that, and we have run it recently to collect data for Quality and Outcome Framework (QOF) payments. We have a second interest in providing the IG framework for that. Once the data are collected and passed to us, we will be the data controller, so we will be responsible for ensuring its security and further use. As you know, the data to be collected are four months’ data from GPs—that is, when it is finally rolled out. The release of that, as it has been agreed with IAG, is very limited indeed. We have agreed to allow the data to be used only by NHS England and no one else, and our current arrangement is that it will have access to it only on our premises, so the data will not go any further than that at this stage. We have a third interest, which is ensuring data security. We are concerned about the transmission mechanisms and making sure that they are secure between the GP suppliers, the intermediary software system and ourselves. Our final interest is ensuring that the data collected are robust and fit for purpose. We are interested in their statistical resilience and whether they are of value in demonstrating that they can inform commissioning, research and other bodies. Those are the four roles we are undertaking. In terms of supporting NHS England, as I said, we are reinforcing our view in terms of IG security, particularly in terms of the ability of GPs to feel secure in terms of the process to us. We are reinforcing our data controller role in terms of their further, onward transmission.

Chair

The core of your answer around care.data is that the regime for controlling the use and access to the manipulation of data will, for data received from GPs, be fundamentally different from the regime that has been applied up until now to HES data.

Kingsley Manning

The release is much more restricted, because that was the agreement made with the independent advisory group. That is the basis on which it has been agreed. We are comfortable with that. We think that there is a great advantage in being able to demonstrate that the system works and is secure, and that the data that are brought out and are linked to HES data will have demonstrable value. We recognise that, for many people—this point has been made by many people—there is a real sense of ownership towards GP data, which is particularly important; it is very sensitive. Taking a step-by-step approach is therefore entirely appropriate.

Chair

But it is odd, isn’t it? We are talking about the same patients, but we have one regime for controlling data—the access to the data and conditions on which it can be used—if it is gathered by a GP, but once the patient is in hospital, there is a completely different regime of control around the data generated in the hospital.

Kingsley Manning

It is odd, although under the NHS constitution any individual has the right to ask the provider—the hospital—to suppress their data. That is a right set out in the NHS constitution.

Chair

With respect, we are talking about the control regime around the use of patient data in anonymised or pseudonymised form, and all the discussion so far has been about the extent to which those controls are effective. You have been seeking to demonstrate to us that you believe that the control regime you apply is effective for HES data, but now we are saying that for GP data, the control regime in future will be fundamentally different.

Kingsley Manning

At its launch it will be fundamentally different, because that was the basis on which the independent advisory group agreed to the extraction going forward. That was the basis, as I understand it, that NHS England negotiated with the RCGP and the BMA and other representatives. I think that is entirely appropriate.

Chair

May I interrupt you at that point? If the control regime for GP-sourced data is regime A, why is it appropriate for the treatment of that data, sourced from a GP, to be subject to regime A, whereas if it is sourced from a hospital it is subject to regime B? From the patient’s perspective, why is that appropriate?

Kingsley Manning

I agree—it is an interesting question. One of the witnesses from the previous session, a gentleman from the BMA, made the good point that there is a particular nature of GP data: it is longitudinal, it is often in much greater depth, and it deals with individuals in a very different way than is appropriate to health care data. He made a powerful argument for why GP data had a particular characteristic that meant it needed to be dealt with differently. That is a core reason for doing this.

Rosie Cooper

You said it would be treated differently “at its launch”. What changes do you anticipate? In other words, are we actually saying that we will pretend to give you additional security until we get that information from the public and the GPs, and after that we will subject it to different tests? In other words, this is a con job isn’t it? Dick Turpin with or without a mask is still Dick Turpin.

Kingsley Manning

I don’t think so at all. I am trying to give you the information. What we have done is agree to a certain set of conditions that I think are entirely appropriate. As you are probably aware, there is considerable pressure from medical charities and researchers on the limitations—

Rosie Cooper

And that overrides my privacy?

Kingsley Manning

No, it does not override your privacy, because, as you are aware, you will have a right to opt out. That is entirely appropriate.

Rosie Cooper

We don’t have a right—

Kingsley Manning

You do have a right to opt out.

Rosie Cooper

We don’t. There is actually no right to opt out in law. The Secretary of State has agreed that any objection will be dealt with, but we do not have a legal right.

Kingsley Manning

You are quite right.

Rosie Cooper

If you can’t even get that right, then we have no chance.

Barbara Keeley

While we are on GP data and the different ways that is treated, may I ask you about free text within GP data, and the mining of free text that is going on at the moment? There are applications—mainly academic, but that is how it starts—that are extracting data from the free text of GP notes. The Minister was very clear when we had the Care Bill debate in the House that there would be no extraction of free text, but in fact we have heard from GP witnesses that there is already extraction and mining of free text. We talked about rich data; clearly there is a lot of rich data just held in the notes in GP surgeries. That is apparently not being done with patient consent. Patient consent has not been asked for for those applications. There is concern now about that.

Max Jones

We have been very clear and the independent advisory group published its decisions on the website transparently that for the extracts, using the GP extraction service for care.data, we will not extract those free text notes from GP consultations and there would be a limited set.

Barbara Keeley

I understand that; you said that last time.

Max Jones

If others are approaching that in a different manner I don’t think that is for me to talk to. If other parts of the health system—

Barbara Keeley

Just to be clear then, you were talking to the Chair about different regimes existing around different types of data. So there is no regime around that—there is no control of that application. Researchers are mining GP notes for free text just to see if it is useful. That is happening and it is happening without patient consent. How is that legal?

Max Jones

The HSCIC is not. I cannot talk to whether other organisations are.

Barbara Keeley

We were talking about the governance and regimes around this. So just to be clear: that doesn’t fall within your remit at all and it won’t do? That is just separate and carries on being so.

Max Jones

We don’t have jurisdiction over the actions of other national bodies.

Barbara Keeley

That is CPRD, isn’t it? Is there any plan to bring CPRD under the HSCIC?

Kingsley Manning

There are no plans that I am aware of. Just for clarity we do handle data on behalf of CPRD to ensure the pseudonymisation process. We act as a contractor for Clinical Practice Resarch Datalink (CPRD), but CPRD is part of the MRHA and not part of us. It operates under a 251 agreement, which are the regulations that allow it to operate. It is covered, in fact, by the confidential advisory group. So it is acting entirely under an appropriate regime but it is not something that is our responsibility.

Valerie Vaz

I am going to stick to care.data. I just wanted to remind you, Mr Jones, in your letter to us you knew that the logo was used in 2013.

Max Jones

You asked me when I, personally, became aware and I think that was the answer.

Valerie Vaz

I am telling you that the logo was used in 2013, which fits with the picture that we are not confident that you can run this whole process. Let us go to care.data—

Kingsley Manning

I am terribly sorry, but we are being asked to—

Valerie Vaz

I want to move on to something else, with the greatest respect, Mr Manning. We have a very short time—

Kingsley Manning

And we are happy to be as helpful as possible but you are casting aspersions on us which—

Valerie Vaz

No one is casting any aspersions—

Kingsley Manning

And you are not giving us an opportunity to respond.

Chair

Valerie, can you let Mr Manning respond to that?

Valerie Vaz

Mr Manning does not know anything about it. It is not his letter; Mr Jones wrote the letter. I was just pointing out that they stole your logo in 2013—

Max Jones

My understanding was that they published their report in 2013, but I was not—

Valerie Vaz

But they used your logo without your permission.

Max Jones

Correct.

Valerie Vaz

And you said you only knew about it in 2014?

Max Jones

Correct.

Valerie Vaz

Ergo, to use a Michael Gove phrase, what happened between then? Where were you? Shall we move on?

Chair

No, you have asked a question.

Max Jones

I was not personally sighted on that fact that that report had been published and the incorrect logo had been used.

Rosie Cooper

We are talking about the organisation that has our data and you haven’t got a clue.

Valerie Vaz

I suppose that it why we have got to the stage we have with care.data and the pause, yet again. I just want to know what has happened between now and then. Is this six months fixed in stone? Or are you waiting for everything to—

Kingsley Manning

I am terribly sorry—

Valerie Vaz

Can I just finish the question? Are you waiting for everything to be put in place and then you will proceed with care.data?

Kingsley Manning

That is not our decision. I have explained to you what our role in this is. The decision on the nature of the programme, the pause and what will be done in terms of the communication package is one for NHS England and its SRO. It is not for us.

Valerie Vaz

Okay. But NHS England isn’t here.

Chair

Well, we didn’t invite it to come; we asked the information centre to come.

Valerie Vaz

Are you working with it or not?

Kingsley Manning

Yes, we are, very closely. I have explained to you the role we are adopting.

Valerie Vaz

From your knowledge and what you understand, why don’t you tell us what you think is happening with the six-month delay? Is it a fixed term, or is it open ended, so that all the problems can be sorted?

Kingsley Manning

I cannot answer that question. I do not have that responsibility. You have to address the question to NHS England.

Chair

Is it not fair to record that the introduction of care.data was delayed for six months substantively because there was public concern about the security arrangements around the handling of existing data by the information sector?

Kingsley Manning

Is that a question?

Chair

Yes, it is a question. Is that not the principal reason?

Kingsley Manning

I think there was a whole series of reasons about the communication process, and there may well have been concerns about security.

Chair

In your relationship with NHS England, have you been asked to address those concerns about security during the six-month delay?

Kingsley Manning

I am very happy to talk about that. Yes, we have—in fact, much more than that. We believe—we have had long discussions with the Department of Health on this—that there are very serious, broader concerns about security, not just about care.data, because of some of the issues I raised earlier. We will be coming forward in the coming weeks with a series of proposals to increase significantly the stringency and robustness of the process we have around a thing called the IG toolkit, and about a series of measures that we were putting in place with regard to security across the system as a whole, not just care.data. We are extremely concerned about the current threats to data security across the whole health and social care system. We will be carrying forward a series of actions, as I said, to significantly increase our surveillance and measures to attempt to get an enhanced level of assurance across the system as a whole.

Valerie Vaz

Okay, let’s try it this way: what is your time frame? What time frame have you been given by anyone—Department of Health or NHS England?

Kingsley Manning

As of today, pending any further announcements—

Valerie Vaz

No, as of the time of the pause. Or today—anything. Today and the pause.

Kingsley Manning

As of today, we understand that the intention is to proceed in October, at the end of the six-month pause. That may be subject to further announcements by NHS England and further changes.

Valerie Vaz

But you are doing some work on this, aren’t you, which you have just outlined?

Kingsley Manning

Yes, I explained to you what we are doing. We have the technology to enable us to do this, in terms of extracting it, up and running. We have demonstrated it in connection with QOF. We are taking measures—we will come back to you if you wish with regard to what we are going to do—to enhance security across the system as a whole. As far as I am concerned, until there are any further announcements, we are planning on the timetable as announced at the time of the pause.

Valerie Vaz

Sorry, I didn’t hear the last bit.

Kingsley Manning

We are planning on the basis of what has been the last announcement, which is that it will be, I think, in October.

Valerie Vaz

So what is the end date you are working to? When do you expect it all to be up and running—you having done your work, NHS England having done their work, the Department of Health having done its work and the Secretary of State having done his work? What end date are you working towards? Have you been talking about that at all?

Kingsley Manning

Yes, I’m sorry, but the intention is that in October we will take the first run. That is what was announced at the time of the pause.

Valerie Vaz

Is that 1 October?

Kingsley Manning

We haven’t decided if it is the 1st or the 2nd.

Valerie Vaz

So it is flexible. It is not quite six months fixed exactly?

Kingsley Manning

We are planning on the basis that it will be delayed for six months and therefore it will be at the beginning of October. I cannot give you the exact date and perhaps I could not even give you the exact time, but it will be at the beginning of October under the current plan. I have to say I am not the responsible officer for this. There may be further changes and further developments and you need to address that to NHS England. It would be wrong of me to foresee what they may or may not do.

Valerie Vaz

This is what is concerning me even more, because you are now saying that you are not in control of it all, yet you are dealing with it.

Kingsley Manning

I am not in control of it, because I am not running the programme.

Valerie Vaz

Who is?

Kingsley Manning

Mr Kelsey and NHS England.

Valerie Vaz

Right. You are completely out of it?

Kingsley Manning

No, but they are the senior responsible officers.

Valerie Vaz

Please help us and the public. We do not know the jargon. We do not know DAAG or any of those other things. The majority of people in the big wide world do not understand all that. You have your meetings behind closed doors. We are not party to it. We are elected by people to ask you the questions. That is why I am asking you the question. Please understand that, because last time both NHS England and HSCIC were here you were answering our questions. Maybe I should address this to Mr Jones? I want to know—sorry, do you want to check something?

Kingsley Manning

I am checking through the original documentation, just to reinforce the point.

Valerie Vaz

Mr Jones, in your discussions with NHS England, you are obviously party to all this, aren’t you? You are not completely washing your hands of all this?

Max Jones

No, we are a strong part of delivering the care.data programme.

Valerie Vaz

I ask because if there are concerns that people have, they know they have time. I want to know whether this six-month period is a fixed time or whether it is flexible. Are you going to make sure that all the system is under control, that everything—transparency and accountability—is in place and that people understand what has happened to their data, if they wish not to opt out, by a certain time? Is there a certain time that they have to opt out by?

Max Jones

As for the system, as Kingsley mentioned, we have a working date at the moment that will be around 1 October. We will take a first extraction, but that date is subject to the consultations, discussions, stakeholder engagement, the advisory groups and the significant engagement that is taking place, led by NHS England. We are the organisation providing the technology and infrastructure with which this will be collected, hosted and analysed. In that environment, we have a long history of holding significant numbers of records and processing them. As Kingsley mentioned, we have just successfully extracted the quality and outcomes frameworks for GPs using this GP extraction software, and we are going through a process of rigorously developing the technology—implementing, testing, and making best use of this period of time. But, as Kingsley said, the decisions about exactly how the communications will be run and how the decisions will be taken are subject to NHS England’s governance and senior responsible officer position, which makes it accountable for the management of the overall programme and the delivery of benefits that come from that investment on behalf of the taxpayer.

Valerie Vaz

Could you help us in terms of whether there are any contractual commitments in place that mean that you have to meet that date of 1 October?

Max Jones

I am not sighted on any.

Valerie Vaz

Should we be asking that of NHS England?

Kingsley Manning

You are perfectly free to do so. I do not see what commitments it would have, but I would be interested to know the answer.

Valerie Vaz

Clearly things must have been put in place before the pause, such as contracts. You said you were speeding on to data extraction.

Max Jones

For the data extraction, as we discussed at the last Select Committee, we already have an existing contract with Atos for the provision of that GP extraction software. That has been in place for some time. It went live successfully recently with the quality and outcome frameworks extractions. That provides a framework within which the care.data GP extracts, as per the independent assurance group specification, will be extracted.

Valerie Vaz

You mentioned Atos. Can I take you back to the letter that you sent us, just to clarify a couple of things? First, are you confident that it can run this kind of contract, given that it is pulling out of another Government contract?

Max Jones

We have a good record. I used to be part of the Connecting for Health regime. We had a good working relationship with Atos running the choose and book service. Its delivery and performance on this first extract with the GP extraction software over the last few weeks has been encouraging.