NHS Patient Data

Andrew Gwynne Excerpts

Thursday 27th February 2014 Westminster Hall

[Andrew Gwynne (Denton and Reddish) (Lab)]

It is a pleasure, as ever, to serve under your chairmanship, Mr Amess. I congratulate the hon. Member for Mid Norfolk (George Freeman) on securing this timely and important debate and on his extremely thoughtful and powerful opening contribution. I congratulate other hon. Members on their contributions, too.

I know how strongly the hon. Member for Mid Norfolk feels about this issue, and he is right. He has been instrumental in establishing the Patients4Data group. I commend also the work of the co-founder, Graham Silk, and of Patients4Data in campaigning for the opening up of data in the national health service. That group has been very good at bringing the issue of patient data to the forefront of debate on health policy across England. I was pleased to share a platform with the hon. Gentleman earlier today at the summit that he hosted in Parliament.

It goes without saying that a growing population, an ageing population, the rise of co-morbidities and the necessary drive to improve the quality of care and treatments available to patients mean that, in future, the success of the NHS will increasingly rely on the data to which it has access. Indeed, if we take as a starting point the fact that the health and social care worlds, through both desirability and financial factors, are heading towards proper and full integration, it goes without saying that in breaking down the structural silos between the NHS and social care and, within the NHS, between community services, acute services, primary care services and mental health services, we also need to break down the information silo mentality in the NHS.

Genuine “whole person” care will require “whole person” information. Let me put the current controversy over care.data to one side for the time being. The fundamental principle is to create a system designed to link together medical records from general practice with data from hospital activity and eventually extend that to cover all care settings inside and outside hospital. As even my hon. Friend the Member for Leeds East (Mr Mudie) said, no one wants to wreck that. It is a really good thing for the future of health and social care in this country.

The improvement of health care in England depends on the removal of the barriers between primary and secondary care—between the GP, the surgery and the district general hospital, and between social care providers and traditional health care providers. Integration is the key to meeting the needs of patients, and the availability of integrated data is central to shaping the services that will meet those needs. It is in that context that the need for data sharing should be seen.

Let me make it clear to the House that Labour supports the principle behind the proposal. Whole-person care must have at its heart a whole-person approach to information. It is important that key statistics drawn from that data set can be used to further clinical research or even future service planning. Let us not forget that if it were not for medical data sharing, the link between thalidomide and deformities at birth would never have been identified, and it would have taken decades longer to establish clearly and definitively the link between smoking and lung cancer, which the hon. Member for Worthing West (Sir Peter Bottomley) mentioned. Good medicine is determined by access to good data.

If we are to improve the lives of our children and reduce health inequalities, we must ensure that data are readily available to researchers. Making data at the local GP practice level available for the first time will give us an unprecedented insight into local health outcomes. Which GPs are over-prescribing antibiotics or antidepressants? What factors are causing delays to early diagnosis of cancer? If we are truly to tackle health inequalities, which are a huge issue in a constituency such as mine, we need a joined-up approach. That is simply not possible without ready access to data.

Most people readily recognise the clear benefits of a data-sharing scheme, but there is rightful concern about how the care.data initiative has been implemented so far. Mistrust of care.data is not surprising given the nature of the data involved and the typically haphazard communication about the scheme, particularly the opt-out programme for patients who do not wish to take part. Many people did not even know that the scheme was happening in the first place, at least until the recent media reports. To be fair, if the only information that someone has about care.data is what they have read in the newspapers, they will probably get on the phone to their GP to make an appointment to opt out straight away.

I do not know whether it is the result of incompetence, a reflection on how we live our lives today or a combination of both, but the conventional methods of public information campaigns simply have not worked. Every home in England should have received the leaflet entitled “Better information means better care”, which my hon. Friend the Member for Leeds East happily brought with him.

The blunt truth, however, is that most people either have not received the leaflet or have not looked at it. Questioning of Ministers during the recent Committee stage of the Care Bill, in which approval for care.data sits, revealed that even Ministers do not know whether every house has received the leaflet, what the opt-out rate is or what the regional variations are.

Although I do not get to see much TV these days—such is the nature of the job we do—the first I saw of the advert for care.data was on BBC “Newsnight” last week. That is an important point for Governments of all political persuasions. As I said at the summit earlier, if we think back to the success of some of the big public health campaigns, such as the “AIDS: don’t die of ignorance” campaign nearly 30 years ago, we remember the hard-hitting TV adverts, the big posters with the tombstone on and the powerful leaflets. Today, as my hon. Friend the Member for Leeds East pointed out, we are bombarded with so much junk mail—pizza menus, UPVC window offers, supermarket offers and, dare I say it, even the odd political leaflet—

[Mr Tobias Ellwood (Bournemouth East) (Con)]

It is a two-horse race.

[Andrew Gwynne]

It certainly is a two-horse race in my constituency; do not let the Liberals tell you otherwise. The point is that it is very easy for someone to miss the leaflet about care.data even if they received it. I received it and I read it, but I think that is probably the neurosis of politicians; when a leaflet comes through the door, we automatically think that our opponents have started the general election 16 months early.

Many of my neighbours, who I assume must have received the leaflet, claim that they did not. Likewise, we can easily skip the adverts on TV. In my home, we have Sky Plus, that wonderful technology that allows us to press fast forward as soon as the advert break starts and skip all the adverts. Conventional methods now fail to penetrate with the vast majority of the general public. We probably need to implement a more personalised approach to make the public aware of the scheme, of the benefits, of the implications and of their individual rights.

Incredibly, we have heard stories of people who want to opt out of the system and have had to make an appointment with their already overburdened GPs to do so. I do not think that that is necessarily the right approach. GPs are already struggling to use their time to deliver good quality general practice and primary care services, and perhaps an easier way to allow people to opt out using a variety of methods should be explored. As the Minister will be aware, the chief executives of Mencap, Sense, the Royal National Institute of Blind People, the National Autistic Society and Action on Hearing Loss have written to the Secretary of State expressing concerns that information about care.data is not being communicated in an accessible way to disabled people, who are consequently being deprived of the opportunity to make an informed choice about the future of their medical records.

We want care.data to work, and it is in everyone’s interests that it does, but—this is where the pause is welcome—the Government need to get a grip before the aims of the project are lost on a suspicious public anxious about what care.data is for and how their personal data will be used. That risks compromising a project that I think we all recognise to be vital. The proposal by the hon. Member for Mid Norfolk for the Government to establish a working group of campaigners and opponents—their inclusion is important—to try to resolve the differences is a sensible way forward. Consensus is the key here.

The Government must understand that the data do not belong to them or to the NHS, but to each of us individually. That should be the starting premise. The combined data that the NHS holds about me are mine and no one else’s, and that should be enshrined. Only then will the Government be able to make the case that inappropriate use of the data could never be sanctioned.

Let us be honest—if the data are mine and they are recognised to be so, that is empowering for me as an individual and a patient. “No decision about me, without me” has been the mantra of Ministers of all political parties in the Department for some years, but how about “no information about me, without me” as the next guiding principle? Our most intimate details are wrapped up in this system. The Government will be able to shore up public and institutional support only when they have convinced the public that the data will not and cannot be abused, and when they have been honest about the potential risks.

The data are owned by the patient, and all parts of the NHS must be their legal custodian. Rights and proper responsibilities must go together—the legal responsibility to use data for necessary purposes, and only for necessary purposes, with proper safeguards in place and, to agree with my hon. Friend the Member for Leeds East, tougher sanctions to underpin them. We need to convey to the public the laudable intention behind the proposals, because even professional trust in the programme is so low that a poll for the Medical Protection Society found that 80% of family doctors believed that the system could undermine public confidence in the principle of medical confidentiality.

[Sir Peter Bottomley]

I often try to look at the questions that people are asked. I am not absolutely certain that doctors were asked, “On balance, would you recommend that people stay in to contribute their information for the benefit of all?”

[Andrew Gwynne]

I entirely take the hon. Gentleman’s point, but if we are to reintroduce the element of public confidence, enshrining proper rights and responsibilities will start to build that sense of trust. As the hon. Member for Mid Norfolk suggested, it is consensus that will get us where we want and need to be.

One example of the problems that can arise lies in recent media reports, which we have heard about again in this debate, including those about the Institute and Faculty of Actuaries, which obtained at least 13 years of hospital data equating to 47 million patients. Often, media reports are not quite what they seem, but the damage is, sadly, done as a consequence. I would hate for the benefits of information sharing within the NHS, and of drawing out anonymised data sets from that system for beneficial medical research, to be jeopardised by incorrect assumptions made from media reports. There would be rightful public revulsion if identifiable or cross-identifiable information were to fall into the hands of insurers and other private interests that do not have the public good in mind, but such reports are potentially damaging to public confidence in care.data, which is already quite low.

That is why we welcome the Government’s decision to pause the scheme. I hope that they will use the opportunity wisely to reflect on how better to engage with the public about the real benefits that we have discussed in this debate, and to revolutionise patients’ rights: make the data theirs; make the NHS their custodian; put in real safeguards and, importantly, proper penalties; and have rights with responsibilities and whole-person information for the age of whole-person care. That would be genuinely transformational.

I reiterate to the Minister that we are happy to support the measures in the House, but as it stands, we fear that the security regime is woefully inadequate. There is still time to save it, and we on the Labour Front Bench have offered the Secretary of State for Health our full support if he can come up with an offer that satisfies everyone. On Tuesday, those points were put to the Health Secretary at Health questions by my right hon. Friend the Member for Leigh (Andy Burnham), the shadow Health Secretary. Maybe the desire for consensus and a way forward is sometimes lost in the theatre of the Chamber of the House of Commons, so I repeat those points to the Minister in this debate, which has been much more consensual and informative than it would ever be on the Floor of the House during Health questions. I sincerely hope that she will respond to them positively.

There are five key protections that Labour wants to introduce. First, we want tougher penalties for any misuse of data; my hon. Friend the Member for Leeds East made that point far more eloquently than I. We also want to keep the requirement for the Secretary of State to sign off on any new application to access the data, which the Government are seeking to remove in the Care Bill. Accountability to the Secretary of State, to Parliament and to us as Members of Parliament on behalf of our constituents is a fundamental requirement that would start to satisfy the need for oversight.

We want and need full transparency for all organisations granted access to the data, so there is full openness about who has access and what data they have. We need a proper targeted and personalised awareness campaign for people with a learning disability, autism or sensory impairments, so we think that GPs should be issued with clear guidance to ensure that all of their patients are informed. We want easier opt-out arrangements than those possible at present. If the Secretary of State is happy to ensure that the new provisions are in place, we are happy to lend our support to make it happen.

In closing, I should say that confidentiality has always had a tense relationship with scientific progress when it comes to clinical research, but it is only right that information is made available outside the NHS in a completely anonymised form. The hon. Member for Mid Norfolk is quite right about clinical data: their potential is enormous, they can revolutionise systems and processes and they can get to the heart of problems in certain areas far sooner. It is hugely empowering for future patients to get away not just from the silo mentalities of the structures of our health and social care system—all parties want to do that—but from the silo mentality about data that exists in parts of the health and social care system: whole-person care and whole-person information.

I commend the hon. Member for Mid Norfolk for his work on this hugely important issue and congratulate him on securing this important debate, on the summit in Parliament earlier today and on the work that he is doing alongside patients for data. Hopefully, we can get some movement on this from the Government, so that we end up with a scheme with the appropriate safeguards. I look forward to the Minister’s response.