Why we need patient data sharing for medical advancement

All around the world scientists are collaborating to discover early diagnosis for diseases and new therapies which will enable us to live longer, healthier lives. To enable this researchers need to access as much patient data as possible to learn from.

George Freeman MP, founder of patients4data was today hailed Reformer of the week by the Reform think tank (and not for the first time) for his progressive stance on this.

But his plans for the launch of an NHS medical records database where all patients records are stored on a central database which researchers could access have been shelved for six months to enable further public consultation and address concerns about privacy and opt out. It’s important patients understand that their anonymity will not be compromised. Crucially, patients will have access to their own data too.

I would like to see pharma share their research too, I believe this would help produce new medicines more speedily, save billions of pounds, and, most importantly, save countless lives.

What is the point of patient data?: Patient data can help drive three revolutions: transparency, research and empowerment. Transparency, because it helps us compare the best-performing hospitals with the worst. Research, because leading clinician scientists can use large datasets to study which drugs work for different people and why. Empowerment, because patients can use data to access new treatments and demand a better standard of care.

Freeman makes a compelling case in this article for the Daily Telegraph which earned him the latest accolade from Reform. Here is an extract, the full article can be read here:

It is not only that the new system is safe, but that the benefits for patients are too good to lose. Take medical research. Data collection allows researchers to look at large-scale patterns of disease and drug performance over 30 years. This enables them to change prescription patterns, to pick the right recruits for specific drug trials and to collect a lot more “lifestyle” information (on diet, exercise etc) which is invaluable in trying to understand patterns of cause and effect.

I saw this for myself when I was involved in a project with King’s College London. MRI brain scans and medical histories from 250,000 patients in the South London Mental Health Trust were put into one database, which academic researchers are now able to study – in anonymised form – to find new treatments for hard-to-treat diseases such as schizophrenia and depression.

Better data can lead to new drugs, better treatments and more lives saved. It can also transform research, and help to shed a light on poorly performing hospitals, making sure scandals such as Mid Staffordshire can never happen again. And it can empower patients. No one today would be content to be denied access to their banking records. Nor should they put up with being kept in the dark on their health: we need to move health from being something done to you by government to something citizens take responsibility for themselves.

In fact, while is a good start, we need to go much further. Ten years ago, the first human genome was sequenced at the Sanger Centre, a mile to the south of Cambridge. It took £100 million and more than 10 years of focused scientific effort. Today, breakthroughs in genetics and computing make it possible to sequence a human genome for £1,000 in 24 hours.

Clinics are appearing around the world offering personalised cancer therapy, with drugs tailored to your specific condition. This is vital, because the more we discover about medicine, the more we realise that our current pharmaceutical model is broken. It turns out that different patients respond to different diseases and drugs in different ways – so plying everyone with the same cure no longer works. The result is that we are wasting billions giving the wrong drugs to the wrong patients. Personalised and genetically tailored medicines would fix that.

From the invention of the railways to the launch of the internet, the future has always seemed a threat to the present. But the simple question remains: who wants to live better for longer? With the proper precautions in place, this data revolution is a force for good. We should embrace it.

Update 24 February

This compelling letter is published in today’s Times and explains why data sharing is so very important for our healthcare –

If data linkage in the UK had not been undertaken in the past we would know less about the causes of disease and be ignorant of inequities in access to care

Sir, In the debate about the plans to link people’s health care data (report, Feb 19), scant attention has been paid to the benefits not only in improving individual’s clinical care but also of protecting and enhancing the health of the public. If data linkage in the UK had not been undertaken in the past we would know less about the causes of disease (eg, pregnant women living near landfill sites have an increased risk of giving birth to babies with congenital anomalies), be unaware of the dangers of some treatments (eg, some drugs for asthma were associated with a 50-fold increased risk of death; metal-on-metal hip implants are best avoided in most patients) and be ignorant of inequities in access to care (eg, women are less likely to receive intensive care for some conditions). None of these discoveries, and the remedial action taken, would have occurred without our ability to link patients’ data from different publicly funded databases. Current plans to widen the linkage of hospital and primary care data will lead to further improvements both in the prevention of disease and in the effectiveness and safety of healthcare for the public.

Signed by:
Professor Nick Black, London School of Hygiene & Tropical Medicine
Professor Lord Ara Darzi, Imperial College
Professor Terence Stephenson, Chair, Academy of Medical Royal Colleges
Professor Sir Cyril Chantler, Chairman, UCLPartners
Lord Nigel Crisp, Past Chief Executive, NHS
Professor Dame Nicky Cullum, School of Nursing, University of Manchester
Professor Martin McKee, London School of Hygiene & Tropical Medicine
Lord Bernie Ribeiro, Past President, Royal College of Surgeons
Professor Patrick Maxwell, Regius Professor of Physic, University of Cambridge
Professor Norman Williams, President, Royal College of Surgeons of England
Professor David Haslam, Chair, National Institute for Health and Care Excellence
Dr Jennifer Dixon, Chief Executive, The Health Foundation
Dr Hilary Cass, President, Royal College of Paediatrics & Child Health
Professor Sir Robert Lechler, Executive Director, King’s Health Partners
Professor Sir Simon Wessely, President-elect, Royal College of Psychiatrists
Professor Sir Andrew Haines, London School of Hygiene & Tropical Midicine
Professor Karen Luker, Head, School of Nursing, University of Manchester
Dr David Richmond, President, Royal College of Obstetricians and Gynaecologists
Dr J-P van Besouw, President, Royal College of Anaesthetists
Dr Peter Carter, Chief Executive, Royal College of Nursing
Professor Iain Cameron, Dean, Faculty of Medicine, University of Southampton
Professor Andy McKeon, Chief Executive, Nuffield Trust
Professor David Adams, Dean, College of Medical and Dental Sciences, University

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