NHS Patient Data

Jane Ellison Excerpts

Thursday 27th February 2014 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Amess. I congratulate my hon. Friend the Member for Mid Norfolk (George Freeman), as has everyone else, on securing the debate, as well as all the Members who have contributed to this thoughtful debate. I must start with an apology for not being the Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), who is otherwise engaged on important business, but I will do my best to stand in for him in this area of his portfolio. If there is anything to which I am unable to respond during the debate, I undertake to do so afterwards.

I add to the voices that have welcomed the work of my hon. Friend the Member for Mid Norfolk on developing the Patients4Data website and other work, and have praised its co-founder, Graham Silk, and all its supporters. I particularly thank my hon. Friend for bringing such a calm, rational and well-informed voice, which is ever more needed in our public discourse. He has become a respected voice throughout the House in this area of expertise for that reason, and has amply demonstrated it again.

The Government support the sentiments outlined in the private Member’s Bill that my hon. Friend introduced. They are in line with the Government’s information strategy for health and care in England, “The power of information: Putting all of us in control of the health and care information we need”, which was published in 2012. His proposed Bill would provide for ownership of, and access to, patient records and health data to empower patients in everyday health care and research. He has outlined the principles in more detail today. The Bill would create a new statutory duty of care on NHS professionals to use and update information and ensure that the next professional on the patient’s care pathway is using properly maintained patient records.

I want briefly to deal with those two areas in turn, and, as Members would expect, I will then touch on some of the aspects of care. Data that have been explored during the debate. The Government feel that there is no need for legislation to provide ownership and access to patient records—the shadow Minister touched on that. Patients already have the legal right to access information in their own health and care records, but it has not been easy get it because it means requesting paper copies, and people might be charged. Easily accessing records online does not require changes to the law, but it is a big challenge to the culture and practices of many health and care organisations and professionals.

The NHS Future Forum emphasised the required cultural shift and the importance of health and social care operating

“as if it is the patient’s or service user’s data”.

The shadow Minister made a good point about the fact that integrating data naturally follows integrating care. The Government’s information strategy stresses the need for a change in culture and mindset, in which health and care professionals, organisations and systems recognise that information in our care records is fundamentally about us. It can therefore become normal for us to access our records easily.

The information strategy also makes it clear that patients will be able to access their own health and care records online; review those records, including test results; refer back to them during the course of care; and benefit by sharing, if they choose, that information with a range of other people who they want to help them with the care and support they need, when they need it. However, to alter legal ownership of patient records is a difficult way forward. Information is not property in the sense in which physical objects are, but is subject to intellectual property rights, common law confidentiality rights and obligations, and rights and obligations under the Data Protection Act 1998. Ownership implies a level of control over a record that is unrealistic and impractical for NHS medical records.

Let me outline why that is the case. Patients cannot, and should not, control what a clinician writes in a record, nor should they be able to delete items from a complete record. However, it is right that patients should be empowered to use the information in their records, for example by scrutinising their records for potential errors, or accessing them to help to manage their care. Colleagues might find it interesting to know that NHS England has committed to ensuring that people will be able to access their GP record online by March 2015. That is a real commitment and is in the NHS mandate. Ministers will, of course, hold it to account on that.

The law already provides individuals with considerable control over medical records should they choose to exert their rights, but it also provides a balance that protects the interests of those who provide care, and enables them to respond to complaints or litigation, monitor the quality of care they are providing, and learn lessons to improve the care of others. My hon. Friend the Member for Mid Norfolk gave a personal example of where that would have been helpful to him, and I have similar personal experience of where someone being able to give such easy access to their data would have been enormously useful. That is also ever more relevant to a sandwich generation of the age of some of us in the Chamber who are caring for the generation below and the generation above. My hon. Friend brought that relevant point very much to life.

On the duty on professionals to share data, sharing information is pivotal to improving the quality, safety and effectiveness of our care, as well as our own experiences of care. It is also critical to modernising care through raising quality, improving outcomes and reducing inequalities—now a legal duty—as well as improving productivity and efficiency. My hon. Friend the Member for Salisbury (John Glen) mentioned the Caldicott review, which outlined the many benefits of sharing data, as well as the cultural change required to create a rebalancing of sharing and protecting information that is in patients’ and service users’ interests.

[Sir Peter Bottomley]

My hon. Friend has prompted me to remember half a sentence I meant to say when I was talking about the baby P case. If all the medical contacts with baby P had been brought together in one place, any clinician would have known that there was a major problem.

[Jane Ellison]

My hon. Friend gives a perfect illustration of the point. We have all, particularly as MPs, encountered people who say, “Oh no—data protection!” and obfuscate in some way, but what they say is almost always absolute nonsense. There are lots of existing legal requirements to share data where needed to protect and look after people. We recognise the valuable role that my hon. Friend has played in making and championing that point.

The Secretary of State has challenged the NHS to go digital by 2018. That will help the sharing of patient records across the whole medial pathway. I echo and welcome the general point made by my hon. Friend the Member for Mid Norfolk on technology and its empowering possibilities. As public health Minister, that is very close to my heart. Of all the demographic surveys and insights into people’s situations that I see, the factor that defies the usual arc of deprivation is the ownership of a mobile phone. That is a great democratising piece of technology and I am keen to see that we use it more and give it more potential to put power into the hands of the previously powerless in this sphere of our lives.

On Government support for the concept of data sharing and the unique identifier, my hon. Friend has been working closely with officials from my Department. We have welcomed that working relationship. Officials have been exploring possible avenues for legislation to ensure that the sentiments outlined in my hon. Friend’s private Member’s Bill and his speech can be taken forward. We are all hoping for a successful outcome in the private Member’s ballot so that we can make progress.

Data-sharing options and the provision of clear guidance that underlines the need for sharing and clarifies what the law already allows are being considered. We are considering placing a duty to share on commissioners and providers. That would force such organisations to ensure that contracts include such a duty to help to change the culture and mindset so that we share data when we need to.

In addition, we are considering introducing a measure to ensure the consistent use of the unique patient identifier—the NHS number—across the whole health and care system. The intervention made by my hon. Friend the Member for Worthing West (Sir Peter Bottomley) illustrated why it is so important that, when we know critical things about a patient, we join them up. The easiest way to do that is by consistently using their unique identifier. The use of the NHS number will unify and standardise the recording and use of information for the benefit of both patients and clinicians. We have heard examples, and I am sure we can think of others. The Government are working on ways in which to ensure that measures are introduced on the duty to share and the use of NHS numbers.

Sharing information for medical research has demonstrated the many benefits that it can bring to us all in society, and that has been extremely well articulated today. I will shortly address the concerns expressed by the hon. Member for Leeds East (Mr Mudie). Members have touched on issues—including cancer, heart disease and diabetes, to name just a few—that have benefited greatly from the sharing of data, and treatments have been found for seriously ill patients.

For reasons I will explain, I want to turn relatively briefly to the care.data programme. It has been much discussed in the House, sometimes heatedly but sometimes calmly, as it has been today. Members have made various points about the programme. My view, which I think is shared in principle by everyone in the Chamber, is that overall the care.data programme is, or has the potential to be, a good thing, for all the reasons outlined by my hon. Friend the Member for Mid Norfolk and others. It offers a great deal to help us to bring benefits to patients. We have heard examples about detecting the problems at Mid Staffs, about autism and the disproven link with MMR, and about thalidomide.

I want to add an example that falls within my portfolio. In health care discussions, there is sometimes a tendency to think that we are moving forward only from the base we already have—that we bank all the existing benefits, progress and discoveries and move forward from that point. However, an area of great concern to people in this country and around the world is the development of anti-microbial resistance and the work required on that. The number of drug resistant conditions is growing, and that is frightening.

We hope that the ability to scrutinise the data will allow us to understand the pattern of growth of drug resistance, because that threatens to take us several steps back from what we assume to be our basic level of health care: the things that we have in our armoury against disease. It is something we need to take very seriously, otherwise there will be a great economic and human cost.

It is clear that most people agree with care.data’s aims, but they have justifiable concerns about how they are being implemented. People want more information and details about how the programme will actually work. That has been well articulated by various colleagues during this debate. People want rights over how their health and care data, especially data that identify them, are used.

Before I became an MP, I worked for a large national retailer organising large national marketing campaigns, so I could probably entirely occupy another debate on the vagaries or otherwise of door drops and the mix of communications needed to reach most people. I say “most people”, because it is almost impossible to design a programme that reaches everyone in a way that they remember. We might reach everyone, but an awful lot of quite good factual detail has proven that there will always be some people who do not believe they have been reached. We have to reach a reasonable level of breakthrough and cut-through with the messaging. I think that is well understood after the last couple of weeks of debate.

I understand but do not entirely share the cynicism of the hon. Member for Leeds East with regard to big Government and large institutions. I lean slightly more towards my hon. Friend the Member for Salisbury—perhaps for the same reasons, because we both came into the House in 2010—and his slightly more optimistic view on life. I meet people in the health system all the time—every day, every week—who have dedicated a lifetime to patient care and to trying to understand how we can make the human condition better. I also meet people wanting to achieve great things, and perhaps we all sometimes forget that we have to take people with us on the journey, and we need to explain.

The hon. Member for Leeds East also touched on a point that has been well made recently, which is to be honest about the benefits versus the risks. I agree, but I think he overdid the risks; he focused almost exclusively on them. However, he is right to say that we have to have a balance between the two, and we have to articulate that. Ironically, people will trust us more if we tell them about the risks as well as the benefits. I really believe that transparency drives greater trust, and I think that point has been made elsewhere. I read the article by Ben Goldacre, and my hon. Friend the Member for Totnes (Dr Wollaston) has articulated it as well. The more transparent we can be about the balance, the better it is.

On the way people view data and balance risk in everyday life, we see the world rapidly changing all the time. The information that people put out about themselves in the public domain in exchange for ease of access, convenience, speed or economy is quite surprising, so perhaps attitudes are changing around where the balance lies. Nevertheless, we need to explain it. Picking up the shadow Minister’s point, we particularly need to explain it and be open about it with those who perhaps are least able to understand the risk versus benefit balance. That is a good point, and I will take it away with me.

We have a period for reflection. The delay in the extraction of the first data means the data collection from GPs’ surgeries will now begin in the autumn, rather than in April this year. It will allow for more time to build up our understanding on the benefits of using the information, the safeguards in place, and how people can opt out. NHS England informs us that it does know how to make it easier for people to opt out if they wish to and that that can be done by phone. That is one of the points picked up in the debate.

We need to highlight the interdependency of trust and the levels of opt-out, because we do not want people to opt out for the wrong reasons. If they want to opt out for the right reasons, because they have made a balanced assessment, that is absolutely fine; it is their right. I share and echo the sentiments of those who are concerned, but I would advise them to wait a bit, see what happens during this time of reflection and make an assessment of where we get to before doing something that might be based on what is going on in the media at the moment.

I want to reassure the Chamber that the Secretary of State for Health, my ministerial colleagues and I are listening to all the concerns. I am not in a position to respond to some of the specifics. We recognise the points made by Opposition Front Benchers—articulated again today—and we are looking carefully at the issues. If need be, safeguards will be put in place over and above what NHS England does as part of its own engagement, and that will help to build public confidence. I cannot go into detail today, but considerable thought is being given to the issues, and when we can comment and add clarity, we certainly will.

Today’s debate has been a timely opportunity. It goes without saying that I will report back to ministerial colleagues who lead on this to draw their attention to the points that have been made, particularly the points about transparency, security and information for the public. Both aspects of the private Member’s Bill championed by my hon. Friend the Member for Mid Norfolk are being worked on. They featured as the main thrust of his speech today. The Government are keen to ensure that the measures are taken forward. We believe that sharing information for medical research has demonstrated the many benefits it can bring to us all in society.

Before I close, I should mention—I think it is useful for colleagues—the Institute and Faculty of Actuaries and the data it used. I think the shadow Minister also alluded to it. I want to put on the record that the data it used was publicly available, non-identifiable and in aggregate form. They were used not to analyse individual insurance premiums, but general variances in critical illness. The information was used to ensure premiums were fair, not to calculate individual premiums.

The moneys paid to the Health and Social Care Information Centre were for administration costs to compile the data, and of course the Health and Social Care Act 2012 has set stronger legislative safeguards. That does not mean that the information was wrongly given; it does not mean that that organisation has said that greater scrutiny should not be applied. However, for the sake of being straight with the public about the balance of risk, it is important to put what happened in that particular instance on the record.

To conclude, the Government are actively looking at what we can do to promote the sharing of data in a safe and secure way, using the NHS number to help connect medical records across the whole health and care system as we move between services. That, as well as professionals being able to access relevant records online simply, securely and all in one place—for example, via clinical portals—will enable more joined-up care. Together with the points I have made about care.data and the potential that that has, which others have articulated, I think we know there is an enormous prize in our grasp, but we know we will win that prize only if we are very careful and thoughtful about how we proceed, taking the public with us. This afternoon’s debate has greatly added to our thinking around that.