NHS Patient Data

John Glen Excerpts

Thursday 27th February 2014 Westminster Hall

[John Glen (Salisbury) (Con)]

I welcome the great opportunity to speak in this debate, Mr Amess—what a pleasure it is to serve under your chairmanship. I congratulate my hon. Friend the Member for Mid Norfolk (George Freeman) on his tireless campaigning, and on the full and sensible way in which he made his case.

Research is the most powerful weapon we have in the fight against disease. For decades, access to medical data has been integral to meaningful research—in the 1950s, it showed the link between smoking and lung cancer; in the 1960s, it proved that thalidomide was harmful to unborn children; and today, it helps our doctors identify the most effective treatments for cancer patients—but it is clearly time to move on from hastily scribbled GP records residing in dusty filing cabinets. Patient data are becoming increasingly critical to ensuring the delivery of better treatments, and they can radically improve how long-term conditions are managed and understood in the NHS and the world of medicine.

Aligned to that, we have personalised care, which is, frankly, the future of medicine. Just a few years ago, cancer was treated by giving all patients very similar, or the same, surgery and damaging radiotherapy. As an example, I understand that Cancer Research is now using some 11,000 patient records to see how their cancers respond to particular treatments. The stratified medicine programme, as it is known, goes to the genetic core of a cancer to detect the mutations that cause it and identifies the specific drugs that can stop it.

Researchers can take on those fragmented pieces of data and collate them. By identifying broad patterns, they can start to understand the most effective treatment for specific cancers at the molecular level. That has undoubtedly developed our understanding significantly. We now know that one drug is more effective than standard treatment for one branch of lung cancer and less effective for another. Unlike the trial-and-error approach of the past, the success of care in the future will depend on researchers analysing a sample and then cross-referencing it with a reliable database to identify genetic markers. A targeted treatment can then be tailored.

It is not just cancer that presents opportunities for better data use. Long-term conditions present one of the most significant challenges for the NHS, but research enables us to identify the most successful medications to manage them. The King’s Fund estimates that we spend £77 billion every year treating long-term conditions. NHS spending on diabetes, for instance, is set to rise from £9.8 billion to £16.9 billion over the next 25 years. We would be spending 17% of our current NHS budget just to manage that. If we replicated those sums of money in lots of other areas of expenditure, it would clearly be unsustainable. That highlights that we must use research to identify the most effective treatments, so we can target resources at them.

A recent Cardiff university study looked at just 10% of GP records in this country. It compared two different treatments used for type 2 diabetes over the course of 12 years and found that one of them has a mortality rate that is 58% higher than the other. Patients naturally seek reassurance that they are being given the best course of treatment. Colleagues would acknowledge that constituents who come into our surgeries are very anxious when they believe that the treatment or drugs they have received are not optimal for their use, and want to know why others are not available to them. Patients naturally seek reassurance, but the reality, if we are to reply honestly to our constituents, is that without expanding the evidence base, it will not be an easy task to maintain the narrative that most people get the best drug all the time. We have a duty to ensure that clinicians and scientists are given the right support from Government to make the ambition of personalised care a reality.

I will respond to the comments made by the hon. Member for Leeds East (Mr Mudie), who raised a number of concerns that my constituents have expressed in e-mails to me, in a few minutes.

The British Heart Foundation tells us that its researchers face considerable barriers due to a complex legal framework and the multitude of bodies involved. That is unacceptable, and it is right that we take steps to tackle unnecessary red tape and barriers to the sharing of information. However, we should also remember the implications. Just this week, we heard that researchers are exploring a test that can identify perfectly healthy patients who are at risk of fatal medical complications based on the proteins in their cells. I do not presume to understand all that, but I recognise the principle that as we have more information, we have the capability to do more, but we remain constrained by the finite budget of the NHS.

On ethics, the hon. Member for Leeds East referred to security of data and the lack of assurance. We have presented the use of data as leading to better outcomes and personalised solutions for patients. We must recognise that there are also enormous ethical implications in respect of the prioritisation of finite resources to treat new conditions and provide new therapies, which may well be just as expensive. So much more will be possible, but it is important that, in parallel with the discussion on access to data, we recognise the challenges of providing an ethical framework for prioritising those finite resources. We will never defeat human frailty altogether, but I want the medical community to reflect on the choices that need to be made to prioritise treatments. Research may find the cure for diabetes or lung cancer, but the second challenge will be to ensure that it is accessible to the population at a time of competition for resources.

Access to data must undoubtedly include safeguards, and obviously there is a lot of scepticism about the reliability of safeguards. My hon. Friend the Member for Mid Norfolk set out five actions that he feels would address some of those concerns. Legitimate questions must be asked on how we handle large amounts of data and ensure that they are used in the right way and for the right purposes. The six-month delay in the consultation is clearly the right time to explore those issues. However, it would be a great shame if we were to miss the opportunity to open up patient data for medical use.

Hon. Members should not rely on the argument, which has been in the headlines of some newspapers, that the data will be used for malign purposes. I instinctively take a positive view of the state. I think it acts in the interests of its citizens, although I am a relatively new Member of Parliament and my optimism may fray if I am still here in the years ahead. I find it deeply frustrating that, when we have the opportunity to relieve suffering and find ways of delivering personalised care for our constituents, we fall back on arguments about the loss of banking data. I listened carefully to what the hon. Member for Leeds East said, but the idea that somebody will know our individual medical histories is pretty unlikely. It would be a real shame if we did not move forward by allowing the data to be accessed more readily.

My hon. Friend the Member for Mid Norfolk is right that Parliament should be involved. It is essential that there are annual reports so we understand where things are moving and the positive outcomes. That would improve public understanding of progress. However, it is deeply wrong to prevent medical science from providing more options for health care. I acknowledge that there are security risks, but it is not beyond the wit of my former industry and the IT industry to work out the necessary protocols and safeguards.

I welcome the opportunity to contribute to the debate. It is right that we are having it, and it is right that we project the Government’s aspirations and hear concerns about them. I hope the Minister will set out in her response the safeguards that she feels are proportionate and necessary, and explain what the positive outcomes will be for our constituents, who are often frustrated by gaps in provision. The NHS is an incredibly complicated organism, and it is very difficult for a constituency MP to grasp where the problems lie. However, something positive can come from the proposal. I thank once again my hon. Friend the Member for Mid Norfolk for his deep knowledge, enthusiasm and inspiration on this subject.