Data in UK’s National Health Service

In March, at the dawn of the COVID-19’s assault on the US, the Department for Health and Human Services finalized two rules designed to give patients access to their electronic health records (EHR) and improve interoperability [1]. Getting the electronic health records system wrong is a costly affair both financially and in terms of human life; fragmentation of data is one of the main factors contributing to a $900B drain of resources in the US healthcare system, and a doctor’s inability to access test results, scans, or a medical history can mean the difference between life and death [2]. These new guidelines are a welcome step forward in this new age of medical pandaemonium.

It is not surprising that the fragmented nature of the US private healthcare system gives rise to problems with EHR. Individual healthcare providers are free to choose which EHR service, if any, they use for their records, making it difficult for them to share information easily. While the privatised nature of the US healthcare system is highly fragmented, the UK has a public and national healthcare system. That would imply that EHR interoperability should be an easier feat to accomplish in such a National Health Service, but surprisingly that is not the case.

The disaster of healthcare data interoperability in the US. All credits to Datavant.

The United Kingdom’s NHS is a state healthcare system, funded by general taxation. However, the organization of service is rarely on a ‘national’ level and is still business-centric. Primary care typically involves visiting your local General Practitioner (GP) at their surgery; it serves as the first port of call for medical care, forming an important part of the community care framework. GPs are independent contractors who often work with other GPs to form small practices. They are structured like a small business in that they organize their own finances and maintain the level of care. Furthermore, while they are regulated by the government and receive NHS funding, they are not directly employed by the NHS. Other sectors of the NHS, most notably hospitals, are organized into ‘trusts’. These are not trusts in the legal sense, but public sector corporations, each with their own board of directors who are responsible for finances and quality of care in their hospitals. 

EHR systems capture every single letter, scan, result, or note made on a patient, bundled together into an often simplistic way. GPs were early adopters of EHR systems; their community-based nature meant it needed to be easy for patients to switch doctors if they moved away. On the other hand, hospital trusts are lagging far behind. Only one in ten NHS trusts are fully digitised and only 37% of NHS trusts have over half of their records digitized [3]. Whilst the US is now focusing on making EHR user-friendly and interoperable, the NHS is yet to free records from the filing cabinet. If a patient were to request their medical records, they would more than likely be confronted with a thick wad of paper that would be more useful as a doorstop than a quick summary of their health. And even in cases where the records are digitized, they are not necessarily useful. They are conglomerates of data, which take new healthcare providers significant resources to sift through. In many ways, the state of records in the NHS is that they are pre-EHR.

Snapshot of Epic’s EHR system.

But it’s not like the NHS hasn’t tried to digitize their records. Under the Blair government, the National Programme for IT was formed in 2003 with the aim of improving the use of IT in our healthcare system. One of the programme’s goals was to create one single, centralized electronic healthcare record database, connecting all of the 300,000 GP practices and 300 hospitals [4]. At the time, it was considered an important step in bringing the NHS into the modern age. However, a decade and £12.4 billion later, the scheme was scrapped, dubbed one of the worst healthcare failures in the history of the health service. Trusts complained that funding for the programme was not allocated on the local scale but instead by region, leaving smaller trusts behind. Leadership of the project changed several times and there was a shortage of technical talent within the scheme. Once the 2008 recession hit, the pressure was on to drop the programme.

With such failure in the healthcare system, charities have used their own electronic health record systems for years. Marie Curie Cancer Care has an EHR system that works in their nine hospices and their nursing team, and can pass on patient information to NHS hospitals if required. In often time-sensitive situations, this prevents the “family from having to repeat information that is already stored by district nurses” and makes it easier to monitor those with serious conditions whilst placing less of a strain on the family at an already difficult time [5].

In the past few weeks, the NHS has made strides to modernise. NHSX, the health service’s technology unit, is currently testing a new contract tracing app that will use Bluetooth to alert members of the public when they have been in close proximity to someone who has tested positive to COVID-19 [6]. Whilst the government is creating this app themselves, NHS technology is rarely developed ‘in-house’. The majority of recent NHSX technologies have been in partnership with Apple, Google, Amazon, or top research universities. It is this connection with larger companies that worries the public; when only 13% of the British public trust tech companies with anonymous NHS data, Matt Hancock, the Health Secretary, was criticised for sharing NHS data with Amazon [7]. The British population are proud of the public nature of their health service, which has been serving the nation for 70 years. Any interaction with the private sector is seen as diluting, and potentially threatening, the NHS and is treated with distrust. 

Such innovative technology should be welcomed, whether through partnerships with large companies, universities, or through in-house startups. However, holding up such extraordinary examples does not patch up the inadequacies of current healthcare record systems. When there are more patient records in filing cabinets than digitised, let alone expressed in an efficient and user-friendly way, there is a wasted opportunity to use this information to improve the quality of care for patients as well as saving space and much-needed time. The trust system is essential for allocating funds and ensuring quality of care on the local level. But the NHS needs to make the most of what makes it unique -the fact that it is ‘national’. Starting with a centralized EHR system that is user-friendly, efficient, and detailed will allow the NHS to monitor health on a national scale much better, rather than relying on individual trusts to report their own statistics each quarter. The new goal is for every NHS trust to have fully digitized its records by 2023, but in this new age of pandemics, it couldn’t come any sooner.

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