Why the digital revolution is creating data challenges for the NHS

By Nik Stanbridge, VP Marketing, Arkivum.

The digital revolution has created fundamental and irreversible changes to our way of life in terms of how we use technology such as tablets, smartphones and wearables. This is particularly true in the healthcare sector, where digitally enabled services are vital to realise those all-important costs savings as it heads to 2020.

Indeed, with Government cuts being enforced onto an already stretched NHS, the healthcare sector needs to implement radical digital transformation strategies in order to reduce unnecessary spending. This includes the use of digital applications to reduce paper records, save space, facilitate data repurposing and so on. At the same time, all of this new technology is creating vast new data streams, all of which need to be securely and economically stored for later access and interrogation.

Making information and services available within a couple of taps of a screen does present some serious concerns for a large proportion of the public around data security and patient anonymity. Add to that the moral concerns that exist in relation to the commercialisation of patient data and you see the extent of the challenge that the NHS needs to overcome before it is able to realise substantial savings through the use of digital health technology.

The lifeblood of any digital initiative is data and the rapid expansion in the volume of patient data will lead to higher quality analysis if the data is stored and managed with an eye on its inherent (but as yet unknown) value. In fact, I think the NHS now views its data as a three tiered asset: essential to the treatment of patients; vital as a resource for research; and now it is becoming increasingly important as a potential source of commercial licensing revenue.

Most people regard their health data as extremely sensitive, not just because it is so personal, but also because its wide disclosure can potentially have far-reaching consequences. While we want a comprehensive health record to be instantly available when we require treatment, we are also concerned about how that information is being stored, accessed, interrogated and used. For example, we are concerned about it being made available for scrutiny by a prospective employer, or by a financial institution calculating our health and life insurance premiums.

The tension between data use and misuse was recently laid bare when the Health and Social Care Information Centre (HSCIC) attempted to introduce its care.data initiative. Designed to make NHS patient data available to certain approved (commercial) enterprises, it was subject to a poorly publicised patient opt-out regime and the promise of the removal of certain identifiers, which in theory should have made the data anonymous but in certain circumstances did not, further eroding public confidence in the programme before it has even been launched.

At Arkivum, we understand the importance and value of securing the integrity and authenticity of sensitive data. In fact, managing the security, provenance and authenticity of healthcare data is our top priority and the ability to do so has been designed into our long-term storage products. Take for example one of our customers, the Bristol Genetics Laboratory, which is based at Bristol Southmead NHS hospital. It delivers routine genetic testing services to the South West region, a population of approximately 5 million, as well as providing highly specialised services to the rest of the UK and internationally.

Faced with mounting volumes of data and the need to address the issue quickly and economically, the lab soon realised that an in-house NHS IT sourced solution was not going to be the answer – even though such a solution would deliver the necessary data security compliance the lab needed.

With the help of Arkivum, the lab implemented the cloud-based Arkivum/100 managed service. While facilitating the storage of gene-sequencing data and digital imaging from the 30,000 genetic investigations it conducts annually, the solution provides secure N3-compliant storage at a cost that is an order of magnitude lower than an internally-sourced system (not to mention the savings the lab realised from the use of a managed service that requires no local IT resources or expertise). This includes a wide range of sample types using a range of molecular and cytogenetic techniques.

Many of these investigations, including those conducted using its Illumina NextSeq and MiSeq next generation sequencing (NGS) platforms, are resulting in a massive increase in the size of data sets (exacerbated by the fact that as the testing gets cheaper, clinicians are requesting more tests and thus increasing diagnostic yield). Big data is becoming a very real challenge for all genetics laboratories though, not just Bristol. Over the next two years, this one lab will generate more than 30TB of data from NGS services alone. The true value of that data is not yet known so it must be stored for the very long-term to be able to access and interrogate it over time as new data analysis techniques are developed.

Digital health technology is certainly creating advances in the way that many health organisations are now operating, but at the same time it is creating huge volumes of data and vast new data streams that the NHS must find ways to oversee in the 'more for less' culture of cost saving that it is currently operating under.

To conclude, I believe there are four key factors that will be central to the success of the NHS's digital health strategy: fully informed consent of patients for the use of their data, the need for a global standard governing the anonymisation of that data, recognition of the fact that healthcare data must be owned by the patient, and the need for data to be 100% trustworthy and authentic.

However, these factors will all be ultimately underpinned by the way that patient data is stored for the long term, and how this is carried out has to be based on the principles of active data management, data security, and compliance. Without these, the value of the data can never be fully realised as its authenticity and trustworthiness will not be verifiable, and in the current economic climate, the ability to deliver all of these in a way that saves the NHS money and delivers more for less, will be critical.

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