Medical Records (Confidentiality)

David Davis Excerpts

Tuesday 11th February 2014 Westminster Hall

[Mr David Davis (Haltemprice and Howden) (Con)]

Importantly, the fear is not only of professional hacking, but of amateur hacking, which can break into major databases. The problem about the medical database is that someone’s medical data are almost as strong as a fingerprint. If people were looking for me, for example, I have five broken noses on my medical record, which probably reduces the numbers that they are looking at from 60 million to about 100; they could also probably work out my age, if that is removed, from when I had my diphtheria jab and various other early jabs. It is still possible to reverse engineer from so-called anonymised data. In the States, that was done with an anonymised data system—the record of the Governor of Massachusetts was picked out by an academic, to demonstrate how weak such systems are.

[Mr Mudie]

I read with interest about the right hon. Gentleman’s unfortunate nose. He makes an important point.

My point is that there will eventually be a breach of security. It is inevitable, given the size of the database and the information stored in it. The human cost to the patient whose identity and medical history are made public is potentially disastrous. Careers could be ended, jobs lost, insurance refused and relationships destroyed if sensitive medical facts are made public or used by private firms, other people or, indeed, the media.

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[George Freeman (Mid Norfolk) (Con)]

I congratulate the hon. Member for Leeds East (Mr Mudie) on raising this issue for a debate that I think merits a bigger attendance. I hope that the subject will be debated subsequently on the Floor of the House.

This is an important issue. We have seen in recent months and years in the House that data sit at the heart of so much of the transparency revolution that is taking place in health care, not least in the Francis report, which was indeed in part driven by a revolution in transparency, with outcomes data revealing differences in outcomes across the UK. That has highlighted that, within our precious and beloved NHS, there is huge variability in standards and outputs. The genie is out of the bottle, in terms of the public interest in the power of those data to drive both transparency on outcomes and patient empowerment—a theme that the hon. Gentleman rightly touched on.

I declare an interest in that I come to this matter after a 15-year career in biomedical science and research, in the last seven years of which I helped to create partnerships in the national health service between NHS clinician scientists, research charities, industry and university scientists to try to accelerate the process by which modern medicines are discovered and developed. My experience is that, over the past 10 years, this country has quietly come to lead in the appliance and use of anonymised cohort datasets and, indeed, specific patient datasets in particular disease areas to drive and accelerate the development of modern medicines, with extraordinary benefits for patients in the NHS.

The truth is that the traditional model of medicines development, on which we and the NHS have relied for nearly 50 years, in which the pharmaceutical industry goes away and spends hundreds of millions—or increasingly, billions—of pounds and comes back to us with a perfect drug that suits everybody, is a model that it cannot afford, and we cannot either. The more we learn about genetics and genomics, and patients and disease, the more we know that your disease, Mr Hollobone, will be different from mine: our susceptibility to it will be different, as will be our response to drugs. The revolution in research data offers an extraordinary opportunity for the NHS to be the place in the world where we develop and design 21st century medicines targeted at the patients who need them and generate extraordinary opportunities for our NHS patients and clinicians.

I want to mention an example that brings this matter to life. The last project that I worked on was here in London, at King’s college, with Professor Simon Lovestone, the head of research at King’s academic health science centre and professor of psychiatry. The project was funded by the National Institute for Health Research, an NHS body, and looked at the catchment population for the South London and Maudsley NHS mental health trust—250,000 patients suffering from a range of mental health ailments. As Members will be aware, in mental health, there is no magic bullet drug; there is a huge cocktail of some very difficult drugs, with hugely traumatic experiences for patients, who often have to change dosage. It is an unsatisfactory area of modern health care, in which we are really failing a large number of patients. The system that was put in place, funded by the NIHR, created an anonymised dataset of the 250,000 patients, which allows researchers to look across that cohort at relationships between medicines and outcomes, disease and MRI scans, and really shines a light on which drugs are working for which patients. That gives extraordinary opportunities to us here in London and in Britain to lead in the field of developing treatments for a whole range of mental health ailments, from Alzheimer’s to a range of other indicators.

The truth is that these data are utterly key to the quiet revolution in 21st century health care and medicine that we are beginning to see for three reasons. The first is research, as we have discussed. The second is accountability, as we saw in the Francis report most traumatically, but across the board. My constituents want to understand and to see that their patient journey from care is properly tracked. I have power of attorney for my mother, and last summer I wanted to be able to log on quickly to see what she had been prescribed and what her diagnosis was when she was unable to do that for herself. The younger generation particularly want and are beginning to expect to be able to use data to drive accountability.

The third and most important reason is empowerment, which the hon. Member for Leeds East touched on. We are moving from an age when health care and medicine was something that was done to us by the Government to something that we want modern 21st century citizens to take more responsibility for. Several concerns have been touched on, some of which are valid and important to discuss.

[Mr David Davis]

My hon. Friend is making a fabulously compelling case and I think that I agree with everything that he says except for one presumption: this is being advanced with one, all-singing, all-dancing database, instead of a set of tailored, directed ones.

[George Freeman]

My right hon. Friend makes an excellent point, as ever, and I was just coming to it.

The hon. Member for Leeds East raised several important points that I want to touch on. We should be clear that the data will be anonymised, and it might be worth looking at a framework to ensure that only anonymised data are released. No one is even beginning to think or talk about insurance or anything to do with insurance companies. That has not been mentioned, and it is important to say that here. That is not what the issue is about. We should all remember that it is illegal for pharma companies to contact any patient even if they have got hold of data.

On opting in and opting out, the evidence suggests that patients want their data to be used in research. The opt-in rate to the biobank project is 98%, and when patients are told that the data are not being used for research, they want to know what on earth is being done with them.

An additional point worth making concerns doctor-patient confidentiality. There are layers of data, and my right hon. Friend’s broken nose would sit quite high. More discreet information such as notes by a GP may not be appropriate for release, and we should acknowledge that we are talking about layers of data.

I will wrap up by saying that there is a huge danger in the Government’s laudable initiative to link their datasets together to drive the revolution: a clear statement of patient rights is needed. Patient data are involved, and patients should have a framework and the architecture to access them for themselves. We should encourage them to take responsibility for their outcomes, their health and their data. If we did that, I think that we would find much more public support for this important initiative, which I welcome.

Congenital Cardiac Services for Children

David Davis Excerpts

Thursday 23rd June 2011 Commons Chamber

[The Minister of State, Department of Health (Mr Simon Burns)]

I congratulate my hon. Friend the Member for Pudsey (Stuart Andrew) on securing this debate on the review of children’s heart surgery services. He has a strong record of campaigning on this issue and of bringing the concerns of his constituents to the attention of the House. I also congratulate him and the other hon. Members on the motion they tabled. The Government and I wholeheartedly support its contents, and I urge other hon. Members to do so as well.

I should also like to take this opportunity to pay tribute to the dedicated NHS staff who work in children’s heart services in my hon. Friend’s constituency and across the country. They do a tremendous job, for which we are all incredibly grateful, more often than not in complex and difficult circumstances.

I should like to confirm that the review is totally independent of the Government, and that it is clinically led. It is not driven by me, by other Ministers or by the Department of Health. It is therefore not appropriate for me to comment on the specific hospitals consulted during process. I do not wish to act, or to be seen to act, in a way that could influence or prejudice the process that is going on. As many hon. Members have said, this is a highly emotive issue, particularly for those whose children’s lives have been saved by the services under review. It is worth reminding ourselves why the review was conceived and planned and is now being carried out.

This is not a new issue. The provision of children’s heart surgery has been a cause for concern since the Bristol Royal infirmary inquiry in the late 1990s. Understandably, there has been considerable pressure from national parents groups and professionals to ensure that children receive the best treatment, and the sole purpose of the Safe and Sustainable review is to ensure that children with congenital heart problems receive the best possible care now and long into the future. To do that, we must be certain that the centres in which surgery takes place are as good as they can be.

[Mr David Davis (Haltemprice and Howden) (Con)]

The Minister will not be surprised to hear that my constituents, like all the others in Yorkshire, are in favour of Leeds, but I do not want to draw him on that. I would like him to help us in our argument by telling us what the clinical outcomes for Leeds are and how they compare with other centres. In particular, will he confirm that they are all safe?

[Mr Burns]

I am grateful to my right hon. Friend for that intervention. With regard to Leeds teaching hospital, he will know that this is a complex issue. There are 36 different surgical procedures listed on the central cardiac audit database, but the three most relevant ones in the context of his question are those that deal with atrioventricular septal defect, arterial switch and Fallot’s tetralogy. Over the past six years, 304 operations have taken place involving those three specialties. Sadly, the number of patients who died within 30 days was 12, and 18 died within one year. The results of surgery in all units are good, with no significant divergence. The issue, however, is the future. We need to prepare for units that can deal with these highly complex procedures and the intense technology needed, and provide the qualified doctors and nurses involved, in order to keep up with professional and public expectations of the high quality of care required. This is not so much about today’s figures as about how we meet the challenges of the future to provide the finest and safest possible care in this deeply complex area of medical treatment.

The consensus among professional associations is that there should be no fewer than four congenital surgeons in a centre, each performing between 100 and 125 procedures every year, for a centre to be optimally staffed. Over the past few years, the outcomes for the services have remained good, as the figures that I have just given to my right hon. Friend illustrate, but there have been several warning signs that the current arrangements are fragile. For many years, professionals and national children’s charities, including the Children’s Heart Federation and the British Heart Foundation, have urged the NHS to review services for children with congenital heart disease. They have consistently raised serious concerns about the risks posed by the unsustainable and sub-optimal nature of smaller surgical centres.

Many of the 150 types of operation undertaken by these dedicated teams are among the most complex, challenging and technically demanding areas of surgery. Success requires intricate surgery on hearts often no bigger than a walnut, coupled with finely balanced judgments drawn from a combination of advancing science, personal experience and compassion. It involves a range of highly trained individual team members—before, during and after the operation.

The risks posed by the complex nature of heart surgery include not just possible death after surgery, but lifelong complications such as brain damage and other disabilities. The judgments of any expert medical team caring for a particular child therefore have a direct and long-lasting impact not only the future of each vulnerable child, but on that of their families.

There is also the issue of recruitment. The fact is that smaller centres have problems with recruiting and retaining the very best surgeons. There is a risk that those working in smaller centres will find themselves working in isolation and in units that are not as up-to-date with techniques and clinical practice as the larger ones are.

Contaminated Blood and Blood Products

David Davis Excerpts

Thursday 14th October 2010 Commons Chamber

[Mr Clarke]

I am sorry, I do not have time.

My constituent also talked about the increased premium he faced in getting travel insurance. People are clearly being penalised again and again because they had the misfortune to find themselves with this condition of haemophilia and then found, as they approached the national health service, that their condition was made unacceptably worse.

I want to thank the organisations that have helped. With particular reference to Scotland, I want to thank Mr Philip Nolan, who spent several hours with my constituent and me, and who, it seems to me, has been in London almost every week for years, preaching to us the necessity to act.

My constituent referred yesterday to the position in Northern Ireland. I do not want to open up yet another party political debate, but the truth of the matter is that even with its economic difficulties, Ireland—if I said Northern Ireland yesterday, I should have said Ireland—has not abandoned its scheme.

[Mr David Davis (Haltemprice and Howden) (Con)]

rose—

[Mr Clarke]

I am sorry, but I do not have enough time to give way.

If the scheme means getting earlier acceptance on to the waiting list and getting problems recognised, and if our constituents should not be doubly penalised for something that is not their fault, I am with my constituent in saying that justice delayed is justice denied—and we have denied justice for far too long. Today provides us with an opportunity to put that right.

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[Jenny Willott]

The hon. Gentleman is correct. This debate on the Floor of the House is something for which many of those affected have called for a number of years. For them, it is important that that has been recognised and that Ministers are now listening to Members of all parties expressing their views.

[Mr David Davis]

Like the hon. Lady, I would have liked the debate to be less partisan than it has been so far. Her example highlights what a tragedy this has been and what an injustice has been committed. Although we are in the midst of a massive financial crisis, we should all recognise that tragedies and injustices like this deserve priority in spending terms over everything else.

[Jenny Willott]

I agree with the right hon. Gentleman. I am disappointed that, as was announced in the statement earlier today, not all the recommendations will be reviewed.