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Patient Medical Records

Volume 576: debated on Tuesday 4 March 2014

It is always a great pleasure to serve under your chairmanship, Mr Weir, and I welcome the opportunity to make a contribution to today’s debate on how our health service can use patient data to improve health care.

Using data collected by the NHS to improve patient care sounds like a wonderful idea and it should be something that we can all support. However, almost nobody in the country, apart from NHS England, the Department of Health and companies with a commercial interest in the area, support what has been proposed. The scheme, which had the chance to bring about huge benefits for patients, has suffered from a complete failure to listen to either patients or doctors. The bottom line is that people simply do not want their medical data to be sold to the private sector or used for profit-making activities, and no amount of awareness raising or leafleting will change that.

I want to ensure that we have a consent-based model for using patient data that patients are happy with and have confidence in. Patients’ opinions should be used to inform the way in which works and not trampled over in the hurry to extract data. Patients matter, but we have heard no apology to all those who were not properly informed about and whose confidential data would have been extracted without their knowledge if there had not been this hastily arranged delay. Why, I ask, have we had no apology to the in-patients who did not receive the leaflet, those with learning difficulties or visual impairments who could not read or understand it, and those whose first language is not English, or to the elderly, sick and infirm, who could not get to their GPs to discuss the scheme?

I fully support the principles behind, but I think we need balance here. Does the hon. Gentleman accept that no patients were informed at all about the fact that their hospital episode statistics data were being released under the previous Administration, and they had no opportunity either to opt in or opt out?

I certainly accept that, and I know that the hon. Lady has already raised that with the Government. I think the Government gave an answer, then had to apologise for the answer they gave and had to correct it.

Well, there is not a Labour Minister responding at this time; there is a Minister from the Department of Health, which is peopled by members of the coalition Government.

Let me make it clear: this is not an argument between people who are in favour of research and those who are against it. Of course, we all want to facilitate life-saving medical research, but I want to do so without damaging patient confidentiality or public confidence in the NHS. We now have another chance to get this right, and we have six months in which to do that.

I congratulate my hon. Friend on securing a timely debate on a very important subject. Does he agree with me that a scheme that is already lacking in public confidence is not helped when Atos has been awarded the contract to extract the data from GP records? Does he agree that that should never have happened?

I entirely agree with my hon. Friend and indeed, I will come to that point later. As I said, we have an opportunity in the next six months to try to get the scheme right. If the Government now address the many concerns raised about privacy, consent and the creeping commercialisation of our health service, they have the opportunity to create a scheme that offers enormous benefit to health care and research. However, if they fail to do that and continue to steamroll ahead, ignoring public concern, in six months’ time they will find themselves in precisely the same place as they are now, faced by massive public opposition to a scheme that has the potential to do so much good and to save lives.

I wonder whether my hon. Friend has noticed an issue that has emerged. NHS England uploaded a vast amount of hospital patient data—188 million records—to Google servers. That was done—we have already heard mention of the firm, Atos—by PA Consulting Group, which lost a Home Office contract a few years ago because of data loss. Does he agree that it appears that NHS England has now lost control of the IT side of the project, and that before we go forward, we need full disclosure of all the uses to date of patient data?

My hon. Friend makes a very good point. I hope that the Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) has taken note of what she said and that the Department will be forthcoming in identifying exactly how much confidential NHS data have been released to private profit-making companies. He might also point out how much income the Government have received from that.

There are a huge number of problems with the existing scheme. I could mention the information leaflets that look more like junk mail and have no opt-out return slip on them, or the fact that data extraction was planned to start before the code of practice on who will be allowed to access the data was completed, or the lack of a clear figure on cost. However, perhaps the most damaging flaw in the whole plan has been the refusal to listen to or to address those concerns when they were raised by doctors and patients. We simply cannot and should not bring in a scheme that lacks the consent and approval of the vast majority of people whose confidential health data will be used.

I thank the hon. Gentleman for bringing the matter to the Chamber for consideration; it is the second time in three weeks that we have had the chance to debate the issue. Data collection is important, because of the benefits that could come from it, but confidentiality and people’s confidence in the system have been undermined. Does he agree that the fact that the NHS data collection is specific to England, and that the Northern Ireland Assembly Minister responsible has indicated that he would have some concerns over a similar proposal, indicates that there is not unanimous support for it across the whole United Kingdom of Great Britain and Northern Ireland?

As usual, the hon. Gentleman makes an excellent point, which just goes to show that the Northern Ireland Assembly view the matter with more concern than the Department of Health seems to at the moment.

I say again that simply spending the next six months dropping more leaflets through letterboxes or building a website will not be anywhere near good enough. The Government must now come up with a coherent plan of how they will change to address the many concerns that have been raised, and NHS England must work out how it will let people know about that.

Basically, the Government have two choices, but first they should stop fighting with GPs and patients who are unhappy with the scheme. I can assure the Minister that the GPs and patients who have contacted me have plenty of ideas about how the scheme could operate with proper safeguards built in. Will the Minister commit, during the six-month period, to engaging with GPs and patient groups about their concerns? As I have said, the Government have two options. They can either ensure that all the patient data extracted are only shared with non profit-making bodies working in the NHS or with recognised medical charities, or, and this is the second option, allow identifiable data to be extracted and used by companies for profit, but only, surely, when patients have specifically opted in to permit that.

The one thing any new scheme must have is clarity. Which datasets and variables will be released? Who decides what information or combination counts as identifiable information? Who will be held accountable if data are wrongly released and confidentiality breaches occur? What will happen if a patient withdraws their consent after data have been extracted, because they change their mind?

The Government must engage with GPs and patients. They could do far worse than look at the survey carried out by Pulse, which showed that three quarters of GPs believe that NHS England should abandon the opt-out system and ensure that data are extracted only after patients have given consent.

Is there any reason to believe that the opt-in would end up covering more than about 13% of patients, as is the case in other countries? What use is that to future generations that want their conditions cured and their diseases ended by good medicine?

If the hon. Gentleman believes that only 13% would choose to opt in, does that not prove that 87% have considerable concerns about the entire basis of the scheme? People do not want their data to be taken outside of the confidentiality agreement that exists with their GP.

On a point of order, Mr Weir. I do not want to intervene again, but the hon. Gentleman asked a question, the answer to which is no, it does not. Inertia is the big problem.

As you well know, Sir Peter, that is not a point of order. It is up to the hon. Gentleman to decide whether to take interventions.

Thank you very much, Mr Weir.

The Pulse survey found that as many as one in 12 GPs are considering opting out all of their patients from the scheme, and 33% said that they were undecided. Unless public awareness and GP confidence improves massively in the next six months, we will see huge opt-outs. What would the consequences of that be for the health service? I asked the Minister what would happen if a GP refused to upload patient data. His rather disconcerting reply was that

“NHS England would need to consider whether to take remedial action for breach of contract.”—[Official Report, 25 February 2014; Vol. 576, c. 275W.]

Will the Minister tell us whether such remedial action would make it impossible for GPs to continue to practise? Can he guarantee that doctors will not lose their jobs for doing what they believe to be best for their patients by protecting the confidentiality of personal data?

NHS England has said that it is delaying the scheme for six months because it wants to ensure that the public better understands the proposals. That is a hugely arrogant argument. NHS England is basically saying, “Look, we know best. We tried to get this through by stealth but we got found out. We will therefore delay it by six months while we try to explain it better to you, the public. We know best—we understand and you do not.” As I just said in response to the hon. Member for Worthing West (Sir Peter Bottomley), 87% of the population have considerable concerns about the scheme and do not want their data to be taken outside of the confidentiality agreement that exists between a patient and their doctor.

No, I have given way on many occasions.

NHS England must start listening. GPs in Birmingham, where my constituency is, have said that they simply do not have time to have a proper conversation with patients about data sharing. GP surgeries are already stretched, and patients struggle to get an appointment within a reasonable time frame. Are we really suggesting that GPs should be talking to patients about the minutiae of a data-sharing scheme when ill people already cannot get an appointment? Would that really be the best use of doctors’ time?

My hon. Friend the Member for Easington (Grahame M. Morris) raised the issue of who is going to extract the information, and pointed out that Atos appears to have won the contract. At first, I thought that that was a joke, and I looked at the calendar to check that it was not 1 April. If it is seriously being suggested that Atos, probably the most loathed and inept company operating in the UK, is to be left to extract the data, all I can say is God help the patients of this country. The Department for Work and Pensions has found that 60% of Atos disability assessments have been overturned on appeal. The company is absolutely hopeless. How on earth can the Government award it a contract to extract patient data? I ask the Minister: will it be done in this country, or on the other side of the world? I have no confidence whatever that Atos will be able to retain the confidentiality that patients want.

In conclusion, some people say that the choice is between protecting patient confidentiality and saving lives, but that is a false choice. As I said right at the start of my speech, people such as me who are concerned about the scheme are not against medical research or the provision of information to allow research to go ahead. I am opposed, along with the vast majority of people in this country, to private information about patients being sold off to private companies for private gain. That cannot be right. I urge the Government to look at the issue again and listen to what doctors and patients are saying.

Order. Sir Peter is seeking to make a speech, but given the time, I can let him do so only if both the Minister and the hon. Member for Birmingham, Hall Green (Mr Godsiff) agree to it. I do not know whether the hon. Gentleman has received any notice that Sir Peter wishes to speak.

A number of Members had asked me whether I would mind their interventions, Mr Weir, and I took many of them, including two from the hon. Member for Worthing West (Sir Peter Bottomley).

Well, one intervention and a point of order that was ruled not to be a point of order. Both were during the course of my 15 minutes. It is a matter for the Minister as to whether he wishes to give up some of his time for the hon. Member for Worthing West.

As I said in the previous debate on this issue, I am grateful that this debate has been held. Nevertheless, I hope that we will take the advice of Ben Goldacre, who said that patients should wait before they opt out and that NHS England should listen before it makes a final decision. I hope that we will find a way to satisfy people, and I strongly urge people to make their data available for the benefit of us all. That is what community is about.

It is a pleasure to serve under your chairmanship, Mr Weir, I believe for the first time. It is also a pleasure to respond to the debate and the points raised by the hon. Member for Birmingham, Hall Green (Mr Godsiff). I congratulate him on securing the debate, as well as on the keen interest he has shown in the correspondence we have conducted via written questions. We have talked through some of the issues and he has expressed concerns about the importance of patient confidentiality.

I hope today to be able to reassure Members that strong safeguards were put in place by the Health and Social Care Act 2012, and that the creation of the Health & Social Care Information Centre was not a sudden event. The process is evolutionary and was debated fully and thoroughly during scrutiny of the Health and Social Care Bill a few years ago. I was a member of the Health and Social Care Bill Committee, as was the hon. Member for Easington (Grahame M. Morris), and it sat for longer than almost any other Committee in the House for more than a decade. It is therefore not correct to say that the issues have not been debated and properly scrutinised in the past, because they absolutely have.

I am not going to give way because of the time. I have not said anything controversial; I am just reiterating the fact that a lot of the issues that have arisen today were discussed at great length during scrutiny of that Bill. The hon. Gentleman will recall that as he made many interventions and speeches in Committee.

We need to highlight the importance of this issue. We must ensure that we have the right data and the right processes in the NHS to inform good care. It is about ensuring that we have the data to improve research, to drive better integration and, in the wake of the Mid Staffs scandal and the Francis inquiry, to ensure transparency in protecting patient confidentiality and in the quality of care provided by health care providers so that we can ensure that high quality care is provided throughout the NHS and that its quality is properly scrutinised. We must learn from examples of good care, and where, by comparison and other standards, care is not good it should be transparently exposed.

There are important research benefits, too. We know that if we want to combat disease, address some of the challenges that we face in the health system and improve our knowledge of diseases from cancer to heart disease, we need to have the right information. We have to ensure that we collect data and information to improve patient care, which is the heart of everything we are talking about today. As long as we do that—I believe that we have the right safeguards in place through the 2012 Act and through the further clarifications and reassurances provided by the amendments to the Care Bill that have been tabled for next week—we are in the right place to deliver improved transparency and care quality while ensuring that we protect patient confidentiality, in which we all believe.

I am passionate about the principles of care, data, and I will not be opting out because of the benefits that the Minister and many others have outlined. He mentions the Francis report, and one of its fundamental principles was that people should be open and transparent about past errors and take account of genuine concerns. I am concerned that what we are hearing from the Health & Social Care Information Centre is very defensive. There is a complete refusal to be transparent about errors; it is blaming everything on a previous body. Many members of those two bodies are the same, so for us to proceed with confidence those legitimate concerns must be addressed.

My hon. Friend makes an important point. It is also important to highlight that sections 263 to 265 of the 2012 Act put much stronger safeguards in place. Those sections state that processes must be in place in the Health & Social Care Information Centre to ensure confidentiality and to ensure that data are always handled in the right way. The body is responsible for ensuring that those processes are kept up to date and that there are accountability frameworks for those processes. That important step forward was not in place for the previous body.

I hope the hon. Lady will forgive me, but I want to make progress on some of the points raised in this debate. I will have to be brief any way, and she had a good chance to question me when I appeared before the Select Committee on Health last week. If she feels that she did not have an opportunity to discuss all of the issues, I am sure she will have an opportunity next week when we discuss these matters in our consideration of the Care Bill. Amendments were tabled last night to support some of the issues that we are talking about today. Those amendments will be considered next week, and I am sure those Members who cannot contribute in greater detail today because of the time will be able to contribute much more fully to next week’s debate.

Finally, it is important to talk about driving and supporting integrated, joined-up health and social care across the system, in which we all believe. I know that those Members who are members of the Health Committee believe in that because I remember being a member of that Committee with the hon. Lady and the hon. Member for Easington. If we are to deliver better integrated care, we need to have the right data. One of the key challenges in the past is that we did not collect the data effectively to measure what good integrated care looks like. We know we need to improve the collection of those data, and we want people with long-term conditions such as diabetes, dementia and asthma to be better supported in their own homes and communities. Of course we need to have the data to do that. A lot of those data will come from primary care, and it is important that we put together those data and analyse them to understand what good care looks like. We have not been in the right place to deal with that in the past, but I am confident that we will be in the right place to do it while protecting patient confidentiality with the measures that we are seeking to implement.

The point that I wanted to make is in line with what the Minister is saying. Following the revelations about IT issues that I mentioned, and the apology that his colleague the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison) made yesterday to the Commons, will he now agree that it would be sensible for Ministers and NHS England to consider keeping one copy of the database and run staff queries against it, so that it is held in one place and not scattered about on various servers, causing consternation and the need for websites to be taken down, as they were yesterday, because NHS England does not know where the hospital data have gone? The only solution is the one that we discussed last week: keeping one copy and running staff queries against it.

It is absolutely right that the discussions that we have had in this debate and the issues raised about have been helpful in building on the safeguards in the 2012 Act to improve the processes of the Health & Social Care Information Centre, as a new body, to ensure that it has particular regard to putting strong confidentiality criteria in place. It is also right to keep those criteria under regular review. Obviously, there is regular communication between that body and the Information Commissioner about issues such as protecting confidentiality.

I am sure that we have a robust set of criteria in place under the 2012 Act. It may be helpful to hon. Members if I outline what they are. I reassure the hon. Member for Birmingham, Hall Green that the data are not released for profit. It is about cost recovery when they are. It is also important to say that data are not released in identifiable form without a strong public policy reason: for example, in a civil emergency or some such situation. Data must be used for the benefit of the health and care system. That is a strong set of criteria for use of the data, and strong safeguards are in place. My right hon. Friend the Secretary of State has already put in place an opt-out for patients who do not want to be involved in the process, which has not been the case in the past.

It is important in this context to highlight that we are not taking a sudden, big-bang approach or change to data; this is an evolutionary process. In 1989, in-patient data were collected for the first time; in 2003, out-patient data; in 2007 and 2008, accident and emergency data. That was about improving and driving transparency, developing better care pathways for patients with, for example, chronic obstructive pulmonary disease and ensuring that we better used data to benefit the health service and patients. Now, when it is so important to drive better integration, primary care data will also be collected. That is not a revolutionary change; it is an evolutionary change. What is important is that now, under the 2012 Act, we have much stronger safeguards in place better to protect patient confidentiality and much more rigorous processes under which the Health & Social Care Information Centre, as a new body, will operate, in order to ensure that it regularly reviews its processes and uses data in the right way.

It is also important to say that my right hon. Friend the Secretary of State fully supports and is committed to the principles of the programme, which will alert the NHS where standards drop, enable prompt action to be taken, help staff understand what happens to people, especially those with long-term conditions, and help us develop and improve care. However, in order to reassure hon. Members further and bring greater clarity to some of the issues and discussions, we have tabled some amendments to the Care Bill. We will have an opportunity to discuss them fully next week when we debate the Bill. I am sure that when hon. Members see them, in conjunction with the safeguards already in place under the 2012 Act that were not there before, they will be reassured.

The programme is a good one. It is doing the right thing, improving research, driving up care standards in our NHS and supporting the integration of the health and care system, which we all believe in. It is also protecting patient confidentiality. With those reassurances, I close my remarks. I hope that hon. Members will take the opportunity next week to debate fully any further issues or concerns that they may have. I will bring them the reassurances that they need.

Sitting suspended.