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Siloed data holding back coordinated health responses

Digital health experts discuss the role of data in coordinating the NHS’s pandemic response and how managing privacy and governance issues are key to further success

The NHS’ inability to gather and analyse the vast amount of data it captures all in one place is preventing the service from effectively responding to a variety of complex and shifting healthcare demands, according to digital health experts.

During Digital Health Rewired on 15 and 16 March 2022, an exhibition and conference event organised by Digital Health, the experts also claimed that ending the siloed and fragmented collection and use of data throughout the NHS is key to managing resource allocation, which in turn will help to reduce health inequalities.

They further added that this will be especially important as the NHS enters a period of recovery, but that privacy and governance concerns still need to be addressed to allow for more extensive data sharing.

Speaking about the use of data during the early months of the pandemic, NHS Improvement’s director of insight and data platform Ayub Bhayat said the disparate nature of data collection within the health service meant it was not able to respond as quickly as the situation demanded.

“Information was being held in spreadsheets by disparate organisations and was being duplicated and rapidly becoming outdated…[leading to] an incomplete understanding of the situation,” he said.

“We needed to create a real-time shared version of the truth, a common operating picture – our response to this was to establish a national NHS Covid-19 data store, which brings together multiple data sources from across the health and care system in England into a single secure, cloud-based location.”

He added that as a result of the datastore, which included dashboards and workflow tools to further analyse the data collected, decision-making capabilities in the NHS were greatly enhanced.

“This enabled us to understand how the virus is spreading and was spreading at the time; identify risks to particularly vulnerable populations; proactively increase health and care resources in emerging hotspots; ensure that critical equipment is supplied to the facility with the greatest need; and divert patients to facilities that are best able to care for them based on demand, resources and staffing capacity,” he said, adding that the NHS must build on what it has learnt using data and analytics during Covid to drive collective recovery and transformation.

“There’s no doubt that our NHS has had been under extreme pressure…dealing with the pandemic and its effects has inevitably had an impact on the amount planned care has been able to provide. This in turn means longer waits for many, many people.

“If we are to effectively manage the waiting lists, then Trusts need an accurate picture of who is waiting and how long, as well as the ability to better plan and manage the data capacity to optimise the use of available resources.”

Tim Ferris, director of transformation at NHS England, also stressed the impact the pandemic has had in showing healthcare professionals the power of using data to address health issues.  

Using the UK’s vaccine deployment as an example, Ferris added: “If you are collecting data about the delivery of a service in near real time, you can quickly spot areas where patients aren't being as well served as they need to be and pivot.”

Ferris also said that, given the advances: “In our ability to manipulate data and bring data from all over the world…data should be having a much greater impact on the delivery of healthcare.”

CEO of NHS Confederation Matthew Taylor added that the use of high quality, real-time population health data will help “to shift from a system that responds to demand to a system that genuinely responds to need”, and that the NHS’ implementation of Integrated Care Systems (ICS) has the potential to “help create that enabling environment” needed to leverage data effectively.

On ICS’ use of data, others said that strong local leadership will be needed to ensure the workforce has the necessary skills and capabilities to ensure healthcare is provided in a coordinated and effective way.

“I would sternly encourage digital and data leaders to look at the costings you are putting into those plans [for staff and skills] that will support the ambition,” said Ruth Holland, deputy chief information officer at Imperial College Healthcare NHS Trust. “ICS’ will stand and fall on their data capability in 10 years’ time.”

She added that training in data and analytics skills will also need to embedded throughout the wider NHS workforce, as without it the effectiveness of any new technologies or digital processes will be limited.

Governance and privacy issues

Bhayat said that, for ICS’ to truly succeed, local leaders need to be supplied with “good data to enable them to plan, commission and improve their services around the needs of their population…we need to build on what we have learned [during Covid] and use data analytics to reshape health and care, and save lives.”

However, getting to this level of data quality and sharing throughout the NHS as a whole means that governance and privacy issues around the data need to be sorted.

Speaking on a panel about building Trusted Research Environments (TREs) – which are supposed to provide researchers from trusted organisations with timely and secure access to health and care data – head of data and digital applications at the North of England Care System Support (NECS), I-Lin Hall, said that the major benefit of these TREs was giving all organisations “access to the same data, really driving this whole ‘single version of the truth’ concept”.

She added that by pooling resources between organisations to review the data and remove duplication, “resources can be redirected to more value added activities”.

Susheel Varma, chief technology officer at HDUK, added that while the technological foundations of TREs already exist, it’s the principles around how they operate that are the real challenge. “Governance is at the centre of every single TRE, not technology – technology is just an enabler, it will come and go,” added Varma.

On potential upcoming changes to the UK’s data protection rules – including serious violence reduction orders in the Police, Crime, Sentencing and Courts (PCSC) Bill and the removal of Article 22 protection against automated processing in the UK General Data Protection Regulation (GDPR) – and whether they will impact the effectiveness of TREs, Varma added it was common in the digital healthcare space for people to wait for politicians or regulators to provide guidance on data-related issues.

“I think this common theme comes along, ‘Oh, let’s wait for the ICO’. No, go and tell the ICO, ‘This is what we think we should do’,” he said.

Gary Leeming, director of the LCR Civic Data Cooperative at the University of Liverpool, added, however, that “any reduction in confidentiality around patient records would not be acceptable”.

The UK’s National Data Guardian, Nicola Byrne, who was appointed to the role in March 2021, shared similar concerns around maintaining public trust in the NHS use of data.

“I think the overriding point I want to make is that it is not simply about being legally compliant, it is not enough for any data initiative or organisation to say, ‘Well, we met our legal obligations.’ Meeting legal obligations is obviously necessary, but insufficient in condition to build public trust,” she said. “More needs to be done to establish what you are doing with data is actually trustworthy.”

In reference to controversy surrounding the General Practice Data for Planning and Research (GPDPR) programme – a primary care data collection service designed to give researchers access to pseudonymised patient information – Byrne added public trust is “context specific”, and that people will not “simply trust everything the government or health and care want to do with data”.

However, she also said that TREs and other secure data infrastructure being developed could “be a very different proposition to the public, and I think people will find it reassuring” to understand how their data is being accessed and how their privacy is being preserved.

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