Data sharing fears could be catastrophic for the NHS – getting it right could save millions of lives

Dr Oliver Harrison, CEO Alpha Health, Telefonica Alpha

Oliver Harrison, CEO Alpha Health

Data is at the forefront of people’s minds at the moment. Among the regular reports of data breaches is the story surrounding Facebook, which has captured public attention and shines a spotlight on how data is collected, stored and used.

With public senses now on high alert in the wake of these recent data issues, I have a grave concern that there will be unintended consequences for our healthcare system. Consequences that could risk lives.

The ability to harvest data with technology has, in many cases, radically transformed industry, from travel to entertainment, banking to retail. Drawing similarities between those sectors and what has been achieved in healthcare, however, is like comparing night and day.

On the surface, this lack of progress can be attributed to legitimate concerns over confidentiality. For more than two thousand years, a pillar of healthcare has been the physician’s duty to uphold patient confidentiality. This is what gives us the comfort to tell our GP things we wouldn’t share with friends

Whilst this is a fundamental principle, healthcare’s single-minded focus on confidentiality has led to the oversight of data use as a way to improve the service on offer. Compared to many other sectors that support lives, healthcare is still largely stuck in the world of Hippocrates when it comes to reaping the benefits of data.

As a result, the healthcare sector has inadvertently created a gulf of missed opportunity, and has likely squandered millions of pounds through unnecessary inefficiency. Worse still, lives may have been unnecessarily put at risk from failing to detect complex problems earlier than might have been achieved through intelligent data analysis. In short, any further delay on progress is of national importance.

We must move to a world where clinical data is made available for intelligent, controlled access and analysis by professionals, to aid prevention and improve diagnostics. Whilst data for big research projects and disruptive innovation is an opportunity not be overlooked, first, the insights derived from data must be used to empower people to make healthier choices and thus reduce chronic illness. Access to data and insights lets the public take a stake in preventing their own illness, which is a powerful tool to saving lives.

NHS England took a small and little-noticed step in this direction last month. Regional health communities were invited to bid for funding to build shared healthcare data programmes. The result will be five new Local Health and Care Record Exemplars (LHCREs) with the aim of improving direct patient care through better record sharing and data analytics.

To understand the potential in this initiative we can look to Abu Dhabi, where I spent some time helping to build the health service. In 2006 – the year I joined the Health Authority – analysis showed that the United Arab Emirates had one of the highest rates of Type II diabetes of anywhere in the world, and growing[1]. In response, the Health Authority introduced a simple central system that held all medical data in the Emirate.

This data system allowed the Authority to take many important steps to better screen for adult diabetes (a programme called ‘Weqaya’). With this simple system in place, it was able to establish a benchmark for diabetic risk for every adult Emirati, provide people with tailored recommendations, monitor their adoption and measure the impact of their behaviour change.

The system worked because it recognised that the most influential factor in personal wellbeing is making healthy choices, and informing those choices was only possible through the intelligent analysis and use of centralised data.

Clearly, Abu Dhabi’s healthcare system is a small operation compared to the NHS, but this example represents what is possible. It proves that healthcare services can reach the height of efficiency, by alerting patients to risk and helping them avoid it before they even need treatment.

Before we get there in the UK, there are a two big challenges to overcome:

Firstly, the technology. It’s essential to build systems that are independent of any specific supplier or solution. These must be scalable, so that new sets of records can be added and provide complete patient data privacy. Most importantly, the technology must be simple enough to empower staff on the ground to make decisions about patient health. Getting this right could go some way to repairing the poor view of NHS IT.

Secondly – and currently most important – is public trust. You only get one shot at this and, in the current political and news climate, overly-ambitious data analysis risks being completely rejected by the public. It’s therefore crucial to make the benefits clear and ensure there is a rock solid governance model. Get this right and people may be more open to how their data could be used to benefit their health, opening up huge possibilities, and saving millions of lives.

We have already started this journey. In 2013, Dame Fiona Caldicott amended the UK health data guidelines, adding a seventh principle[2]: “The duty to share information can be as important as the duty to protect patient confidentiality.” Last year, Sir John Bell published his Life Sciences Industrial Strategy[3], recommending the creation of Digital Innovation Hubs so researchers can work with meaningful datasets of three to five million people.

Today, the establishment of LHCREs is the first practical step taken to implement what could be the biggest shift in healthcare thinking since the days of Hippocrates. Progress can’t come quickly enough and long may it continue.

[1] http://www.diabetesatlas.org/

[2] https://www.gov.uk/government/publications/the-information-governance-review

[3] https://www.gov.uk/government/publications/life-sciences-industrial-strategy


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