COVID-19 - data collection

This guidance provides advice for paediatricians and health professionals on how to accurately collect and record data on patients with suspected or confirmed cases of COVID-19 using existing surveillance and data collection sources.
Last modified
30 March 2020

Data sharing / information governance

The information Commissioner's Office has released guidance for healthcare professionals on data protection and coronavirus. Data protection and electronic communication laws do not stop Government, the NHS or any health professionals from sending public health messages to people, either by phone, text or email as these messages are not direct marketing. Nor does it stop them using the latest technology to facilitate safe and speedy consultations and diagnoses. Public bodies may require additional collection and sharing of personal data to protect against serious threats to public health.

NHSX has published COVID-19 information governance advice on what information should be shared, who it should be shared with and how it should be shared. This includes information on mobile messaging, videoconferencing, home working and using personal devices.

COVID-19 testing

Public Health England, NHS England and the Department of Health and Social Care have agreed to prioritise testing of COVID-19 for those most at risk of severe illness from the virus in the UK.

The Government is reporting the outcomes of testing online on a daily basis. PHE has defined clear guidance on sampling, testing and reporting. The local PHE Health Protection Team (HPT) should be informed of:

  • Any case from a long term care facility
  • Any care from a prison of prescribed place of detention
  • Any hospital outbreak
  • Other unusual scenarios.

Please note that there are different approaches to testing across the UK, as testing has been expanded into Scotland's communities

With limited testing for individuals with mild symptoms, there is a paucity of data collection on the number of true cases of COVID-19.

Surveillance and data collection

  1. British Paediatric Surveillance Unit (BPSU) is undertaking weekly surveillance of neonates with COVID-19 requiring hospitalisation and is linked with maternal surveillance. This is being run by the Research Policy Unit in Oxford and is led by Dr Christopher Gale. Surveillance of children over 28 days will be undertaken by PHE.
  2. United Kingdom Obstetric Surveillance System (UKOSS) study of COVID-19 in pregnancy: The BPSU study is planned to run in parallel with a UKOSS surveillance study focusing on pregnancy - cases identified by the UKOSS study will be used to cross validate BPSU reporting and vice-versa. Combined data will be used to determine rates of vertical transmission across different groups, including potentially high-risk populations such as pre-term infants.
  3. National Neonatal Research Database (NNRD): De-identified data held by the NNRD and used to provide denominator data on the number of neonatal unit admissions; linked NNRD data (using NHS number) will be used to ascertain details of neonatal treatment for identified patients with COVID-19.
  4. Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK): MBRRACE-UK data will be used to validate any deaths of babies as a result of COVID-19 that occur in the neonatal or maternity unit among the surveillance population, with details into planned confidential reviews.
  5. Paediatric Intensive Care: linked data from Paediatric Intensive Care Audit Network (PICANet) will be used to ascertain details of treatment on Paediatric Intensive Care Units (PICU) for identified cases of paediatric patients with COVID-19.
  6. Hospital episode statistics (HES) will be available to cross check data, as there is now a HES code for COVID-19 (U07.1).
  7. The National Institute for Health Research (NIHR) is undertaking a public health research study, via the UK Clinical Characterisation Protocol (CCP). For more information on the study and guidance on how to obtain a site code, please contact: CCP@liverpool.ac.uk
  8. Countries who are part of the International Network of Paediatric Surveillance Units (INoPSU) are in discussion with regards to sharing surveillance protocols. Please contact us for more information.
  9. The Royal College of Emergency Medicine has released guidance on how to code cases of COVID-19 through the Emergency Care Data Set (ECDS).
  10. NHS England is hosting a service evaluation and audit to provide important up-to-date information to clinicians relating clinical aspects of COVID-19, while also determining the care needs of children admitted to hospital with COVID-19. The study will collect data in two parts, the first part will collect baseline data on all children suspected of having COVID-19 and requiring admission to hospital, or whilst an inpatient (Part 1). If COVID-19 is confirmed, then clinical details will be collected on a daily basis to determine the course of disease, therapeutic strategies used and level of care required (Part 2).
  11. The Co-SPACE study - COVID-19 - Supporting parents, adolescents and children during epidemics, run by the University of Oxford, aims to find out how families are coping during this pandemic and what parents can do to help support their children’s mental health. The online survey is open to parents and carers of child(ren) in school year 0-11.
  12. In England, the National Child Mortality Database (NCDM) has requested CDOPs and others working in Child Death Review (CDR) report deaths potentially involving COVID-19 within 48 hours. NCDM will monitor cases in real time and collate the information before sharing it with NHS England and Public Health England to inform national strategy to combat COVID-19. Guidance on the process, including what to record and report to NCDM is available online.

ICD-10

The World Health Organization (WHO) has introduced a new International Classifications of Diseases, Tenth Revision (ICD-10) emergency code to allow healthcare professionals to record cases of COVID-19.

The diagnosis code 'Emergency use of U07.1' (U07.1) must be assigned for confirmed cases of novel coronavirus (2019-nCoV). This code must be assigned in the primary diagnosis field.

Manifestations of the virus (eg pneumonia) must be coded in addition, followed by the diagnosis code 'Coronavirus as the cause of disease classified to other chapters' (B97.2). See:

  • DGCS.6: Infections
  • DCS.I.4: Bacterial, viral and other infectious agents (B95-B98).

Use of these ICD-10 codes requires no change to systems or release of data files, as the codes are contained within the current release of ICD-10. 

You can access NHS Digital guidance on use of COVID-19 terms and the NHS Digital ICD-10 browser.

SNOMED-CT

SNOMED-CT international has provided an interim release of relevant COVID-19 concepts, with 24 records added alongside core concept descriptions. The release aims to provide up-to-date terminology to allow clinicians, researchers and administrators globally to code and analyse COVID-19 cases.

Alongside this, NHS Digital have provided new terms for COVID-19, which suppliers can download

The NHS Digital SNOMED-CT browser is available online

Data collection and audits (non COVID-19)

On 28 March 2020, NHS England and NHS Improvement wrote to all NHS Trusts and Foundation Trusts to offer advice on how to reduce burden and release capacity during the COVID-19 pandemic. The letter provides guidance on audits, data collection and reporting (PDF) which should be maintained in this period, and which should be suspended.

The letter outlines that the majority of routine data collections should remain in place. However, all national clinical audit, confidential enquiries and national joint registry data collection can be suspended. Analysis and preparation of current reports can continue at the discretion of the audit provider, where it does not impact front line clinical capacity. Data collection for the child death database and MBRRACE-UK perinatal surveillance data will continue as this is important in understanding the impact of COVID-19.