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Closing the information gap

Little was known about a new virus called “SARS-CoV-2” as it began to spread across the globe at the end of 2019. Clinicians didn’t even have a clinical code to record cases. NHS Digital was part of the effort to build and share the information that is crucial to fighting the virus.

Three clinicians dressed in PPE talking in a busy hospital ward.

In late January 2020, the terminology team at NHS Digital realised that they had to move to an emergency footing.

They’re a tight-knit group who’ve got used to people not quite understanding what they do, but the situation in January laid bare not only how vital their work is to the NHS – but how clinicians have come to rely on digital information sharing.


SNOMED CT (Systematised Nomenclature of Medicine Clinical Terms) is the world’s most precise clinical health terminology. It allows clinical IT systems to record diagnoses, treatments and other details in a consistent way.

It can seem tedious and be taken for granted – but what happens when there is no code?

It would be like trying to run a modern supermarket without barcodes.

Dr Jeremy Rogers, Consultant Terminology Specialist and part of the team at NHS Digital that coordinates the UK’s contribution to SNOMED CT, says: “Because this was a completely new disease, there were no designated SNOMED CT codes anywhere in the world at that time and, without codes for consistently recording information about the pandemic or our response to it as both evolved, we would only dimly know what was happening around us, what to do about it or whether what we had done was working. It would be like trying to run a modern supermarket without barcodes.

“Our first emergency release of 7 codes for clinicians was on 5 February, and then over the remainder of 2020, we made 7 further releases. In a normal year, we release twice,” Rogers says.


83 million SNOMED codes for COVID-19 recorded in patient records since the beginning of the pandemic

245 new codes related to the pandemic were created by the NHS Digital team, including COVID-19 testing, shielding, risk factors, symptoms, diagnosis, treatments, vaccines and vaccinations.


Dr Arjun Dhillon, a practicing GP, Associate Clinical Director and Caldicott Guardian at NHS Digital, explains what the new codes meant in a GP surgery.

“At the beginning of 2020, there was a lot of anxiety. What were we supposed to do with people? Was there a clinical definition for this thing? We didn't even have a way to record it in our systems as something that was different from a cold or any other upper respiratory tract infection.

“Just being able to write in our records that we had a suspected case of coronavirus or that we had indeed made the clinical diagnosis – it was a simple but vital clinical tool.”


Sharing information

With hundreds and then thousands of clinicians diagnosing COVID-19 cases, the situation began to change so rapidly that what was known about COVID-19 one week, was superseded the next. Frontline staff needed information – and they needed help handling the public demand for it.

“What was required was a definitive source that was up to date, which people could go to and know was right,” says Professor Jonathan Benger, NHS Digital’s Chief Medical Officer and a consultant in Emergency Medicine and pre-hospital care. “That was also true for clinicians. At some points, it wouldn’t help to ring your GP to ask if you were at risk or needed to quarantine. They wouldn’t necessarily know, because the guidance may have changed in the past 10 minutes.”

The NHS 111 telephone and NHS 111 online services, which both rely on NHS Digital’s NHS Pathways clinical decision support system, and the NHS.UK website were crucial to addressing the information deficit, both among the public and clinicians. “It helped to ensure that primary care wasn’t being overwhelmed. Anybody ringing a GP would get a recorded message saying that if you think you might have coronavirus, call NHS 111 or go online instead,” says Benger.

We were in effect delivering a service to the health advisors and clinicians as much as the patients.

As the pandemic hit, a key task was to ensure the system was up-to-date and drawing on the very latest advice and guidance, says NHS Pathways programme head Mandy Williams.

“We were first alerted in late January to an issue out in China. At that time our guidance was based on where people might have travelled and any potential symptoms they might have had.”

From that moment, the crisis changed by the day. “Certain cities were affected, then whole countries, then cruise ships and hotels. Then Public Health England came out with a set of symptoms and a case definition. We had to update all of our pathways within the system in line with that guidance.”

The usual 8 weekly update of pathways within the system accelerated immediately.

“Things were moving so rapidly, we changed content 3 times in one day. We were working all day and night just keeping that content revised and ensuring the health advisors’ information and training was up-to-date,” Williams says.

“We were in effect delivering a service to the health advisors and clinicians as much as the patients,” says Benger. “This ensured that the information about coronavirus that everybody was using was as accurate and up-to-date as possible.”

Without these projects, GPs and doctors would have had to make a lot of blind decisions.

Connecting clinicians

Just as vital was the need to start meshing different services and systems together, so that data and information on patients, diagnoses and outcomes could be shared, particularly between GP practices. This need became even more acute as COVID-19 outbreaks forced some practices to close.

A project called GP Connect, commissioned by NHSX, would be part of the solution. A long-standing NHS Digital programme, GP Connect’s original aim was to allow clinical staff across different GP practices to share and view patient data quickly and efficiently. It would also permit appointments to be booked across different organisations and geographic areas. It was the ideal solution for GP practices during a pandemic lockdown.

That access to patient records was a game changer. 

The deployment schedule for GP Connect was brought forward to 24 April 2020 and, by June 2020, the system was up and running in 97% of GP practices in England. It gave GPs access to primary care records, regardless of where patients were registered, and the flexible appointment system meant GP surgeries could provide care that was safer and more effective.

“GP Connect helped general practices become more resilient,” says Dhillon. “We were better able to work across our primary care network and clinical commissioning group. In my practice, I could see the records of any patient who needed care and was able to assess them properly. That access to patient records was a game changer. It allowed a more patient-centred approach and the development of COVID-19 services.”


SCRa – a crucial tool

Alongside GP Connect, the Summary Care Record application (SCRa) was also a crucial tool.  At its core, the SCRa provides a convenient and secure way for authorised health professionals outside a GP practice to access important information about a patient held in their GP record. That could include the drugs they are on and any allergies to treatments they have.

In response to an instruction from the Secretary of State for Health and Social Care, additional information such as long-term conditions and immunisations held in the GP record was added to all Summary Care Records during the pandemic, unless a patient had opted out. That increased the portion of SCRs sharing the additional information from 5% to 92%.

Health professionals such as ambulance crews, hospital doctors and pharmacists can access the Summary Care Record application and see crucial details relating to COVID-19 status, including a pop-up informing them that a patient is on the Shielded Patient List, alerts when a patient has coronavirus history they need to read and detailed information about a patient’s COVID-19 vaccination history.


50% increase in views of Summary Care Records - 263,000 in November 2021 up from 175,000 in April 2020

In the past 6 months, average weekly views have increased 50% compared to the 6 months before the pandemic.


“It was this work, which NHS Digital did alongside NHSX, that changed the mechanism for uploading information, and suddenly we had populated the Summary Care Record to high levels,” says Dhillon. “The availability of that extra information has been very important for patient care.”

Benger agrees: “It gives clinicians a lot more information about patients than was previously possible. Summary Care Records had been limited, often to just who the patient was. But the emergency coronavirus legislation and support from GPs meant we were able to bring in extra data to inform and guide patient care.”


Working together

None of the work on widening access to data would have been possible without the support of clinicians themselves. “We had to work closely with them, identifying what they needed,” says Benger. “Many of our senior staff are clinicians and they are out there working on the frontline. That has helped to keep us grounded when it comes to thinking about the extent to which our services are practical and genuinely helpful.”

Dhillon says the collaborative effort between clinical and technical experts has been crucial. “If you work in isolation, you don't get the right answer. You need to work in tandem to understand how the health system works. That way, you can identify the opportunities.”

Across the range of NHS digital services, the opportunities have been many and varied, ranging from improved software, through enabling services that provide direct support for the home-monitoring of vulnerable COVID-19 patients.

The rollout of Microsoft Teams by NHS Digital to 1.3 million NHSmail accounts at the start of the first lockdown was a major asset throughout the crisis, helping frontline teams continue to work together despite the virus’s spread. In one week alone, for example, nearly 6 million secure messages were sent between NHS staff and more than 1.3 million meetings were held using the software.


Millions of work hours are being put to better use thanks to NHS staff using Microsoft Teams to communicate with colleagues, rather than picking up the phone or holding in-person meetings.


NHS Digital also provided crucial data to frontline planners. When hospitals were coming under a lot of pressure, we provided data to help them ensure that they had the beds, the staff, the oxygen, the ventilators they would need that week and next week, so they weren’t overwhelmed,” says Benger.

Other workstreams have helped deal with the burdens of COVID-19 care. For example, NHS Digital data informed the supply of pulse oximetry devices direct to high-risk COVID-19 patients, allowing patients to monitor their own oxygen levels at home. The Emergency Department Digital Integrator was also introduced to allow NHS 111 online and NHS 111 telephone services to book patients into A&Es directly and provide the hospitals with clinical information before patients arrive. This helped to limit overcrowding in waiting rooms.


Mother and child sitting in waiting room of A&E.

The Emergency Department Digital Integrator helps to control the flow of patients into A&E.


The Child Protection-Information Sharing service, which alerts NHS and social care teams when children with protection plans unexpectedly arrive in emergency departments, was also expanded to give school nurses and health visitors secure access at a time when the pressures of the pandemic increased the risk of vulnerable children falling out of view.

Digital systems are now so much a part of business-as-usual for the NHS that it is hard to get an overall perspective on their contribution to the pandemic response, but Dhillon asks what would have happened without them.

“Imagine if every time you saw a new patient it involved email or faxing around for their details,” he says. “Without these projects, GPs and doctors would have had to make a lot of blind decisions.”

Benger adds: “The pandemic caused a massive shift in the ways that the health and care system works together to care for patients. We wouldn’t have been able to respond as effectively as we did without these digital systems in place to help, support and inform.”   

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Last edited: 20 December 2021 9:16 am