Motion for leave to bring in a Bill (Standing Order No. 23)
I beg to move,
That leave be given to bring in a Bill to allow patients access to and ownership of their own electronic patient records; to require medical professionals to maintain and share electronic patient records as part of individual care plans; and for connected purposes.
Mr Speaker, do you know your NHS health number? How many colleagues in the House know theirs? I ask because it is an important little number, for reasons I want to expand on, a number that opens a door on to a whole new world. It is the world of personalised medicine and patient empowerment.
As you are aware, Mr Speaker, from your support for medical research charities, medicine and health care are being transformed by an explosion of new technologies around the world. We are living through a biomedical revolution every bit as profound as the agricultural and industrial revolutions that came before us. Health care is moving from being something done to us by Government to something we do for ourselves. It is a revolution that is transforming the traditional world of drug discovery, in which I worked before coming to the House.
The UK is pioneering a new model of patient-centred biomedical research. Across the world, the life sciences industry is radically reconstituting itself around what everybody is coming to recognise as the most important asset of all—the ability to work with patients and their clinicians, and with biopsies, patient records and data, to design a new generation of targeted and personalised medicines.
This model of targeted medicine unlocks the biggest prize of all—a new model of reimbursement where, instead of sitting in smoke-filled rooms every five years to negotiate prices for one-size-fits-all blockbuster drugs which neither we nor the industry can afford, we get to be the country getting drugs at reduced prices, reflecting the value we have delivered through our NHS infrastructure. That is why the Prime Minister’s leadership in grasping this opportunity through the life sciences strategy matters so much, as do the vision and the measures contained within it—the £1 billion a year investment in the National Institute for Health Research, the catalyst fund, the patent box, the NHS open data initiatives, and now the £100 million Genomics England project. Ultimately, linking clinical and genomic data and using the power of modern computing provides the opportunity to turn the NHS from a major driver of the structural deficit into a major driver of growth in life sciences and a catalyst for public sector innovation, reform, and patient and citizen empowerment. This really matters.
But there is a problem—in fact, a series of problems. The data are not yet integrated. Connecting for Health was a disaster. The landscape is getting better, but it is still very patchy. The best GPs are streets ahead of the worst. Hospital records are very fragmented. There is almost no proper integration of patient records with the care system. Electronic patient records are not yet mainstream in our health or care sectors for patients nor clinicians. This matters, not just because it is holding back our ability to lead in research, but here today for patients too. We need only look at Mid Staffs and Winterbourne View to see that our inability properly to monitor patient treatment and care is having a profound impact on patients.
The Bill has two simple provisions. Clause 1 would provide for ownership of and access to our patient records and health data to empower patients in everyday health care and in research. Clause 2 would create a new statutory duty of care on NHS professionals to use and update the information and to ensure that the next professional on the patient’s care pathway is using properly maintained patient records.
The Bill is intended to have a number of key effects. First, it would reassure patients by establishing in law that ultimate control lies with us, the patients—that these are our data and we are clear that they belong to and are controlled by us, not the Government or the European Union, whose latest data protection laws risk holding back this revolution in medicine. We need to raise awareness of the power of patients to access our own data. We need to change the culture inside the NHS so that patients who request data are not sneered at or resented as troublesome but treated as enlightened health care citizens taking an interest in and responsibility for our own or our loved ones’ life prospects.
The Bill would allow us to log on and check our medical histories, including prescriptions, dates of when we saw who, and key medical information—or to check for a loved one using their NHS number—and to check and submit any changes or additional information, any side effects or symptoms, and our compliance. This is crucial information lying at the heart of modern medicine. We could use our EPR—electronic patient record—to plug into the exploding world of online health apps, which are transforming health care with devices such as in-house diagnostics and watchstrap heart and blood pressure monitors that can automatically upload data to our electronic health record and transmit it to our clinician. We could use the EPR to give permission for our data to be used in any NHS medical research and/or to enter clinical trials. Ninety-nine per cent. of patients say, when asked, that they would not only be happy for their data to be used in trials but are amazed that they are not already.
On the health care side, the Bill would mean that every health care professional would have a duty to use the EPR system and keep our records up to date, and to record treatment and ensure that the records are passed on to the next person on the care pathway. Thus the EPR becomes not a boring chore but the central tool for ensuring continuity of care. If a person or their loved one, or a constituent, passes from GP to hospital to community care sector and back again, as do an increasing number of elderly patients, in particular, it would be easy for them, their loved ones and their doctors and carers instantly to track and monitor their status, condition, diagnosis and treatment, and whose care they are in.
In a few years’ time it will be unimaginable to think of health records and patient monitoring as it is today, with paper records, cardboard boxes, partial digitisation, fragmentation across hospitals, and community care a black hole. It will be as unimaginable as the world of banking before electronic and telephone banking empowered millions of banking consumers to take more responsibility for their finances. The same revolution is happening in health care. Of course, there are a number of issues, challenges and things to get right as regards the sharing of data. I am aware of those and I am working on them with opinion leaders as we draft the Bill to make sure that we get this right.
Without the measures in this Bill there is a clear and present risk of the UK—far from leading in this world of personalised medicine; far from winning in the global race for investment; and far from the NHS pioneering new models of health care and productivity and patient empowerment—becoming a backwater and talking the talk but not walking the walk.
In the past two weeks since I made public the Bill’s aims, it has already secured extraordinary support from a wide range of key opinion leaders in the field, including more than 50 medical research charities, leading professor clinicians at the front line of UK research medicine, the NHS data commissioner and the Ethical Medicines Industry Group, which is not big pharma, but small, emerging companies pioneering the new treatments and diagnostics that are all too often locked out by our current system of NHS innovation rationing.
Most important of all is the support of patients, whose data, NHS and health care we are discussing. Patients have had to be patient for too long. They include Graham Hampson Silk, who has told me that this revolution in research-based medicine saved his life. Ten years ago, he was given six months to live—yes, Members heard me correctly. His life has been saved by the team of clinicians and NHS staff at Birmingham royal infirmary and the Institute of Translational Medicine, led by the inspiring Professor Charlie Craddock, who is here today. He found a drug in development in the USA, raised money through local fundraising to fund a trial for Graham and is now pioneering personalised cancer treatment here in the NHS with NHS patients and their data, so that every patient becomes a research patient, helping prevent the next generation from suffering unnecessarily.
I commend this Bill to the House.
Question put and agreed to
That George Freeman, Charlotte Leslie, Dr Phillip Lee, Mr Dominic Raab, Jesse Norman, Geoffrey Clifton-Brown, Damian Hinds, Dr Sarah Wollaston, Nick de Bois, John Glen, Dr Julian Huppert, Rosie Cooper and Natascha Engel present the Bill.
George Freeman accordingly presented the Bill.
Bill read the First time; to be read a Second time on Friday 17 January 2014, and to be printed (Bill 134).