It is high time for the NHS to modernise and deliver for our most desperate patients
In 2001, at the age of 41, I was diagnosed with chronic myeloid leukaemia (CML) following a scan to investigate what I thought was a minor knee injury. I was told that I only had three years to live, which, given that my wife and I had three young children, was obviously a devastating verdict.
Despite that frightening prognosis, I have turned out to be one of the lucky ones. I was referred to Professor Charlie Craddock at the Queen Elizabeth Hospital in Birmingham, who was able to secure me one of only forty places on a clinical trial for the very first example of personalised medicine in history. It was for what was then a promising drug developed in the US called ST1571. This proved to be a lifeline in the very truest sense of the word and, fifteen years after I was diagnosed, I remain in molecular remission and my wife and I have been lucky enough to see our children grow up.
The success of this trial was largely thanks to medical research facilitated by the patient data of the leukaemia community. My life was saved, as many others have been, as a result of data being collected, scrutinised and analysed by academics and doctors. This begs the question, why am I one of the lucky ones? Surely in the 21st century NHS it should be routine to collect and utilise patient data in order to improve treatments for life threatening diseases such as leukaemia, motor neurone disease and others?
There has recently been some controversy in the media surrounding Google DeepMind, an artificial intelligence company run by the internet and technology giant, and their use of patient data from the Royal Free NHS Trust. DeepMind are in the process of building an app for doctors to help them identify AKI conditions earlier in patients, but need large amounts of patient data to do so.
The fact that patients’ data was being shared with third parties, despite the benevolent intentions of doing so, was heavily criticised by a number of civil rights groups and commentators. I believe we must always ensure that data is used responsibly and those who misuse data should face prosecution. However, partnerships such as the one between DeepMind and the Royal Free NHS Trust have the potential to significantly improve treatments for patients with the realistic potential of saving around 10,000 lives annually and therefore it's a no-brainer that this use of patient data should be encouraged, not vilified. We are at risk of putting the cart before the horse in the health data debate – the first question we should be asking ourselves is how can our data be used in order to improve treatments for those suffering from motor neurone disease, Alzheimer’s and other diseases?
I have been exceptionally lucky with my own treatment, but there are far too many patients across the country who are being given ineffective treatments, or who have been left with unanswered questions, due to a lack of sufficient data on their condition. We need to start taking luck out of the equation, and that’s why Empower: Data4Health is so important.
At the launch of the campaign earlier this year, the speakers included Amanda Walburn-Green, who told the story of her daughter Georgia. When Georgia was born doctors told Amanda and her husband that there might be a problem, yet despite a series of tests they were unable to tell her exactly what this problem was, and Amanda, Georgia and her entire family suffered years of uncertainty. But now through the genome mapping project – only possible because of patient data – they have a diagnosis and can move forward from this limbo.
This story illustrates perfectly the rationale behind Empower: Data4Health. The campaign is calling on the government to rollout electronic health records nationally and bring together the data for use in potentially life-saving medical research. For parents and patients, such as Amanda and Georgia, this could offer better and much earlier diagnoses and treatments, with doctors able to examine the records of other patients across the country with similar symptoms.
There is also a convincing economic case for the creation of a national database of health data. The Science and Technology Select Committee has reported that such a database could contribute £14.4bn to the British economy by 2017, with more efficient use of drugs, equipment and medical treatments. This money could then be re-invested back into the NHS for even better patient outcomes.
As you may be aware, the government has tried to introduce such a database before. The Health and Social Care Act 2012 made provisions for the introduction of ‘care.data’ – the term given to the project – but plans for the database fell through following dreadful communication of the proposals to the public and widespread concerns about misuse of patient data by the private sector.
These concerns were quite understandable and the Empower: Data4Health campaign believes that patients’ autonomy over their own data should be front and centre of any future attempts to re-introduce care.data. However, as a country we cannot let fears about data collection hold back the significant benefits from research that could save thousands of lives every year. The future success of care.data (or whatever you want to term it) will depend on a fine balance being struck between data protection and patient autonomy on the one hand, and access to patient data for academics and the pharmaceutical industry on the other. We want to ensure that the government gets this balance right.
The good news for the campaign is that the Life Sciences Minister George Freeman is fully behind the idea of a national patient database. Speaking after Amanda at the launch in Parliament, Mr Freeman said that “The biggest obstacle we face is data. You will put me under pressure, and I look forward to being hounded by Data4Health.”
This is certainly something that we intend to do and I know that politicians, academics and patients alike look forward to making the case for the better collation and ultimately use of patient data over the coming months.
Graham Silk is a business investor and co-founder of Empower: Data4Health