Improving NHS England’s system for collecting data on long-COVID patients and services

Long COVID is a major legacy issue for the NHS as a result of the COVID-19 pandemic with millions of people experiencing a range of symptoms and health problems that last beyond the initial acute infection. The long-term effects of COVID-19 are often referred to interchangeably as long COVID and post-COVID-19 syndrome. 

The National Institute for Health and Care Excellence (NICE) COVID-19 rapid guidelines define post-COVID-19 syndrome as “Signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post-COVID-19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed”. NICE considers that long COVID includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more). 

The NHS in England established 90 post-COVID services, providing access to specialist diagnosis, treatment and rehabilitation. NHS England established a national post-COVID data system for England, to collect information about people who have attended a specialist post-COVID service. This was intended to provide a better understanding of what works for which sorts of patients. 

This project contributed to the development of this comprehensive database for England by bringing learning from other countries and health conditions to bear on the development of England's data system for post-COVID services. 

The aim of the project was to contribute to NHS England's emerging post-COVID syndrome data system by learning from efforts to compile post-COVID treatment data in other countries and from the experience of other disease registers in the UK.

This was done by identifying: 

1. what person-level data other countries were compiling on post-COVID patients and the services they receive, and how they were using these data 

2. what insights could be gained from disease registers for other long-term health conditions in the UK that may provide learning related to the set up and use of a future post-COVID system in England. 

Data were collected from selected higher income (i.e. OECD) countries with well-developed health and social care data systems, that experienced similar COVID waves pre-vaccine rollout to the UK. In the UK, we examined disease registries which had been set up to collect longitudinal data on patients with long term care needs. 

The project involved review of the literature and key informant interviews with individuals who had been involved in the development of longitudinal datasets related to post COVID or other conditions. 

The project provided information to support policy makers and healthcare managers make informed decisions about long COVID data collection activities in the UK. 

Regarding long COVID in high-income countries:

Addressing research questions related to the management of long COVID requires diverse data sources that capture different populations with long COVID over the long-term. No country examined has developed a comprehensive long-term data system for long COVID, and, in many settings, data collection is ending leaving a gap. There is no obvious model for England or other countries to follow, assuming there remains sufficient policy interest in establishing a long-term long COVID patient registry.

Regarding data collection for registries in the UK:

We identified six key considerations when establishing a sustainable disease registry: 

(1) include a diverse set of stakeholders

(2) involve patients at every stage

(3) collect a core data set for all participants

(4) ensure the data system is flexible and interoperable with the wider data landscape

(5) anticipate changing data needs over time

(6) identify financial opportunities to sustain the registry's activities for the long term