How data is at the heart of the healthcare revolution

It doesn’t take long for Glaswegians to give new landmarks a nickname – the Clyde Arc became the “Squinty Bridge”, the Clyde Auditorium was renamed “The Armadillo”, and the subway is still known simply as the “Clockwork Orange”.

Picture: Shutterstock

So, it was little surprise that the Queen Elizabeth University Hospital (QEUH) – built on the site of the old Southern General and burdened with an overly-long full name – was quickly dubbed the “Death Star” by those living in the surrounding areas.

In full: The Scotsman's 2019 data magazine - 'Doing Data Right' It’s no wonder that the hi-tech hospital conjures up images of the Empire’s pride and joy from the Star Wars films. Bristling with the latest gadgets and gizmos, the facility has everything from a helipad on the roof to robotic trolleys that carry equipment around the site.

While Darth Vader may have wanted to use his space weapon to conquer the galaxy, the clinicians at QEUH have more altruistic aims in mind. Chief among them is harnessing the power of data to save lives.

The QEUH is at the heart of a growing life sciences cluster, which includes the Stratified Medicine Scotland Innovation Centre and the Imaging Centre of Excellence. Both are part of the emerging field of personalised medicine, which aims to give the right treatment to the right patient at the right time.

Instead of a trial and error approach, personalised medicine involves scanning a patient using the latest imaging techniques and analysing their genetic makeup through their DNA. This means that the medicines given to a patient can be tailored to their exact genes or their exact tumour or other ailment.

Both imaging and genetic sequencing throw up huge amounts of data, which not only needs to be analysed but also stored securely. Tackling these challenges involves both the public and private sectors, with the innovation centre bringing together Aberdeen, Dundee, Edinburgh and Glasgow universities, the NHS,

global biotechnology company Thermo Fisher Scientific and biomedical informatics firm Aridhia.

“The big challenge of a personalised medicine approach will be the amount of data and its storage as well as the computing power to analyse this,” explains Dave Tudor, co-chair of the Life Sciences Scotland Industry Leadership Group.

“The NHS in Scotland has a well- described digital health and care strategy that has been published and is now moving forward. This will take time but is moving towards a more universal, cloud-based solution to NHS digital data. Data security and governance is vital. The NHS takes this very seriously.

“The model for this is that, in the main, researchers will undertake their work using NHS secure systems. If data has to be taken away from NHS systems, this is done with the correct authorisations and permissions and as anonymised data.”

David Goodbrand, a partner in the technology and commercial team at law firm Burness Paull, agrees. He points to one particular route of attack that could be opened up if

personal data isn’t stored securely.

“The data being handled is extremely sensitive,” says Goodbrand. “In particular, with the growth of data available, there is an increased vulnerability to linkage attacks. This is when hackers piece together pseudonymised data as a method of identifying individuals. DNA and imaging data could certainly be vulnerable to this.

“Big data analytics is one of the UK Government’s main areas of focus in relation to its life sciences industrial strategy. The NHS is actively collaborating with private industry to enhance its capability in this area.”

Liz Grant, professor of global health and development at the University of Edinburgh, points to the wide range of applications for big data, not just in the UK but around the world. She reels off a list of ways in which big data can help not just to ease illness but also to promote wellness, including predicting the spread of epidemics such as Ebola, determining who should be vaccinated and when to stop the spread of diseases, and in assessing the risk factors for mental health, such as antenatal depression.

“I think there’s a moral duty for those of us who have the computing technology to share it with countries that don’t,” she adds, highlighting the university’s work in Africa. “There’s also a security duty because diseases don’t recognise geographic

boundaries, so there’s no disease that is just one country’s problem, it’s

every country’s problem.”

Grant also points to the benefits that big data can bring to areas such as her own speciality in palliative care, saying: “Big data can help us to understand what people are dying from and whether they’re receiving the right care in their final days.

“It can help us to make sure patients are getting the right pain medication such as morphine to help ease their suffering, while also saving money for families and for health services by stopping them spending cash on medicines that don’t work for them.”

Data ethics, policy and security are all concerns for NHS

Personalised medicine is not the only source of vast amounts of data for the NHS. Simply shepherding the health records of millions receiving traditional treatments through the system is enough to make even a hardened data scientist’s head spin.

“One challenge in handling a large amount of data is ensuring it is current and up to date,” explains David Goodbrand, pictured, of law firm Burness Paull.

“NHS Scotland has produced an open data platform, which allows its organisations to publish open datasets in order to encourage data sharing and the advancements in health care services that can result from this.

“Ensuring that data is being handled properly by appropriately trained individuals is another challenge to the NHS. It has produced a data handling example policy to ensure its correct usage.”

One of the major factors in managing healthcare data is protecting it from on;ine criminality. In May 2017, the global WannaCry cyber attack cost the NHS an estimated

£92 million to fix, with 19,000 medical appointments cancelled.

“Given the sensitivity of data and the number of individuals involved, cyber-crime is an ever-present threat,” adds Goodbrand. “The WannaCry incident shows how widespread a cyber-attack on the NHS can be and how many people can be vulnerable in the case of a breach.

“A Data Security Centre has been introduced by the NHS. This

provides services such as training, monitoring and support in order to provide protection from cyber threats.”

With so much sensitive information at stake, ethical issues also arise for the health service on a daily basis.

A prominent ethical issue arising out of data handling is balancing patients’ right to privacy with the promotion of sharing patient data for the benefits of health outcomes,” says Goodbrand.

“In mid-July, the NHS published a ‘Code of conduct for data-driven health and care technology’ – a

ten-point document which ensures that electronic health records and artificial intelligence in the health and care sector are regulated appropriately.