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Data Access Register - full project summary

Application ID LLC_0006
Project Title Comparing the burden of long COVID in the community as measured by self-report and electronic health records: a study by the CONVALESCENCE consortium
Lead Applicant Dylan Williams
Organisation(s) Name(s) University College London (UCL)
Approval Date 28/10/2021
Application Status Approved
Lay Summary

In this study we hope to find out how many people who are suffering from long-lasting symptoms after Covid infection (long COVID) are known about by their General Practitioner or by other health professionals.

We will do this by comparing:

  • electronic health records
  • reported long Covid in survey data

This will allow us to find out if patients with Long Covid are getting help from their GPs or other health professionals. We can then let GPs know how to work with Long Covid. It could also help to find out which groups of people are likely to be left without help when they have Long Covid

Datasets Requested

Study Data

  • National Survey of Health and Development (NSHD, 1946 British Birth Cohort Study
  • Southall and Brent Revisited Study (SABRE) (non-linked data only)
  • English Longitudinal Study of Ageing (ELSA)
  • 1958 National Child Development Study (1958 NCDS)
  • British Cohort Study 1970 (BCS 70)
  • Millennium Cohort Study (MCS)
  • Genetic Links to Anxiety and Depression (GLAD) Study
  • Twins UK
  • Track-COVID
  • NIHR BioResource COPING
  • Extended Cohort for E-Health, Environment & DNA (EXCEED)
  • Understanding Society (UK Household Longitudinal Study)
  • Northern Ireland Cohort for the Longitudinal Study of Ageing (NICOLA)
  • Born in Bradford
  • Generation Scotland

Linked Data

  • Covid-19 Vaccination Status
  • GPES Data for Pandemic Planning and Research (COVID-19)
  • Covid-19 UK Non-hospital Antigen Testing Results (Pillar 2)
  • Hospital Episode Statistics Critical Care
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatient
  • Hospital Episode Statistics Accident and Emergency
  • Covid-19 SARI-WATCH (formally CHESS)
  • COVID-19 Second Generation Surveillance System (Pillar 1)
  • Covid-19 UK Non-hospital Antibody Testing Results (Pillar 3)
  • Civil Registration – Deaths
  • ECOSS (Covid Testing)
  • SMR01 General / Acute Impatient and Day Case
  • NHS Vaccination Data
Results & Impact

The term long COVID was coined in spring 2020 by people with ongoing symptoms after contracting/catching COVID-19. Since then, guidance has been issued to healthcare professionals in the UK on how to assess, refer and diagnose people with suspected long COVID. However, it is unclear how many people with long COVID in the community are seeking and receiving appropriate care from their local healthcare providers.

We examined whether people in England with self-reported long COVID in 2020-21 had evidence of it being recognised by general practitioners in their health records after more than a year later.

To do this, we used information from eight longitudinal population studies (LPS) linked to electronic health records through UK Longitudinal Linkage Collaboration. Out of 898 people who reported long COVID to their LPS, only 4.7% had long COVID diagnoses in their health records.

Middle-aged people were more likely to be diagnosed with long COVID than younger and older people, as were individuals of white ethnicity compared to other ethnic groups.

Our findings suggest that some people with long COVID have had difficulties accessing and/or receiving sufficient care and support.


Link: The long COVID evidence gap in England – The Lancet