by George Freeman

George Freeman MP has introduced a ten minute rule motion looking at electronic patient records and patient data opt-ins.

A few years ago a cancer patient called Graham Hampson-Silk came to see me. Ten years before his visit he was given six months to live.

His life had been saved by a team of clinicians at Birmingham Royal Infirmary and Institute of Translational Medicine who found a drug that was still in development in the USA. They decided to try it.

The Birmingham team pushed the boundaries of innovation. They were exceptional.

But such stories should not – and need not – be exceptional. Innovation and personalised medicine should be at the heart of every treatment, and central to every consultation between patient, doctor and nurse.

We have the ability, here in the UK, to turn the NHS into a bubbling cauldron of research and innovation in which every willing patient is, as David Cameron has said, a ‘research patient’.

If you think about it it’s obvious. Millions of patients are treated every year in clinics and hospitals up and down the land.

Each interaction generates information – data – that if collected could be used to inform researchers about how drugs work on different people in different circumstances, or how a different approach to a standard cancer op has helped a given set of patients recover faster than another set who had a slightly different treatment.

From there, this data could be used to inspire researchers, test ideas, and to sub-divide groups of patients with combinations of diseases to develop personalized treatments for small groups of patients – specially those with less common diseases.

And all this with a few strokes of a computer keyboard.

Even better – data from one set of patients, say with dementia who have had brain scans but who are each receiving different groups of drugs, can be given to clinicians or pharmacologists to see en masse which groups respond best to what.

The possibilities are endless. We are all living longer, and we are all more likely to experience multiple diseases – diabetes, cancer, Alzheimer’s – each with no cure in sight.

We need to capture the data available to advance new cures and treatments. But we don’t do it – because we can’t.

Today, medical records are in a mess. Some are digitalised. Some are bundled up in manila envelopes. Some clinicians capture the data assiduously. Others are neglectful.

Try to access your records and see what happens. You might be lucky. But the chances are it will take weeks – if you get them at all – and there is no guarantee they will make any sense. They are not standardised.

This has two effects.

First, if patients could see their records and plug in their data – drugs dosages, vital statistics, genetic history – to new software and apps now available on the open market, patients could make better informed choices as to how to protect themselves from potential disease latent in their genetic make-up, or manage chronic illness better.

And, if the NHS could collect and share – anonymously – patient data ,the UK would once again become the hotbed of medical advance and personalised medicine.

This is why I have introduced a ten minute rule Bill into the House that makes two provisions:

• A new right of Patient Ownership of Patient Data, and a simple mechanism for patients to opt-in (or out) of research and clinical trials.

• A new Duty of Care on all Healthcare Professionals to ensure patients’ Electronic Patient Records must be used, updated and passed between NHS professionals in a patient’s Care Plan.

As the Human Genome Project builds momentum here in the UK, and as we map more and more of our genes, think how rich the results would be if we could combine patient data including response to new drugs - at scale - with new genetic research?

The potential is huge.

Access to our medical histories – and the ability to use them to our personal advantage, for the good of our communities and to empower the UK to become a leader in medical development - is at stake.

Finally, think of it like this: we all have access to our bank accounts, online. It is a right. It is our information. We use it to manage our lives. And our health is surely more precious than our wealth – yet we cannot access our own data.

That must end.

There is a groundswell of support for innovation now building in the UK. Health Secretary Jeremy Hunt has made a statement supporting Lord Saatchi’s Medical Innovation Bill – which will offer legal protection to clinicians who wish to innovate.
Innovation is to the fore.

That is why I am launching a campaign, the Patients’ Alliance, to drive innovation in the NHS, to cure disease and to ensure that the UK becomes a world leader in medical research.

And so that every family can tell a story like Graham Hampson-Silk - who survived, who beat the odds, thanks to the new, innovative NHS.

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