Current projects

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

Long COVID-19 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 COVD and post-COVID syndrome.

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

This project contributes 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.