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
6 July 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 UK Government is currently implementing the NHS test and trace service (please note that there are different approaches to testing across 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.

Surveillance and data collection

Paediatric surveillance studies

The British Paediatric Surveillance Unit (BPSU) are coordinating three studies / surveys:

International Network of Paediatric Surveillance Units (InoPSU): Countries who are part of INoPSU are in discussion with regards to sharing surveillance protocols. For more information, please contact richard.lynn@rcpch.ac.uk.

United Kingdom Obstetric Surveillance System (UKOSS) study of COVID-19 in pregnancy: The BPSU neonatal study is running in parallel with this 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.

Public Health England (PHE) are conducting enhanced national surveillance for childhood COVID-19 cases. As PHE receive electronic notifications of positive SARS-CoV-2 tests from hospitals in England, they are contacting paediatricians to complete a short online questionnaire for hospitalised cases in children aged <16 years. To report cases you can contact PHE directly to supply data (patient consent is not required as per legal permission provided by Regulation 3 of The Health Service Control Patient Information Regulations 2002). Though managed by PHE, the online questionnaire welcomes data from England, Wales and Northern Ireland.

ISARIC WHO Clinical Characterisation Protocol UK (CCP-UK): This is a public health research study, with prioritised support from the NHS and the National Institute for Health Research (NIHR). The CCP-UK has been activated by the UK CMOs for all cases of COVID-19 admitted to hospital and underpins the RECOVERY trial. Documents for the CCP-UK are being distributed by the NIHR Clinical Research Network. For more information on the study and guidance on how to obtain a site code, please contact: CCP@liverpool.ac.uk.

Impact on paediatric services

NHS England service evaluation and audit (includes link to study, plus presentation of data collected): This provides 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 in England. The study is collecting data in two parts. It collects baseline data on all children suspected of having COVID-19 and requiring admission to hospital, or while an inpatient (Part 1). If COVID-19 is confirmed, then clinical details are collected on a daily basis to determine the course of disease, therapeutic strategies used and level of care required (Part 2).

RCPCH are collecting data to monitor the impact of COVID-19 on child health services. Data is collected weekly on the following topics: service capacity, staffing, PPE, testing availability and child health outcomes. The data are reported back regularly to support service planning and to be used as a tool to influence government and decision makers.

Neonatal

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.

Intensive care

Paediatric Intensive Care Audit Network (PICANet): Linked data from PICANet will be used to ascertain details of identified cases of paediatric patients with COVID-19 within intensive care units. PICANet will publish regular reports summarising patient characteristics, treatment received and outcomes of confirmed cases within PICUs. 

Child deaths / mortality

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 NCMD is available online.

During the COVID-19 pandemic, the central aims of the Joint Agency Response (JAR) still apply. While the circumstances in which a JAR is required are unchanged, how they are enacted may need to change depending on circumstances. Find out more, including the full guidance on the NCDM website.

Mental health / wellbeing

Co-SPACE study: COVID-19 - Supporting parents, adolescents and children during epidemics: This study, 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 school aged child(ren), aged 4-16 in the UK. There is a separate survey for pre-school children (aged 2-4 years).

Renal

Three COVID-19 surveillance studies in the UK for children with kidney diseases:

Appendicitis

The CASCADE study aims to understand the national impact of the COVID-19 pandemic on the management of children with appendicitis in the UK and to summarise the outcomes of this patient population during this time period. Paediatricians treating children with appendicitis are asked to encourage the general surgeons who manage them to participate in this study.

Down syndrome

The Trisomy 21 Research Society (T21RS) is collecting vital information to understand the risks and course of COVID-19 among people with Down syndrome. The aim is to learn if people with Down syndrome are more likely to get sick from COVID-19, and if their illness is related to other health conditions that they may have. This information will be used to help identify who is at the greatest risk and how to better protect them. An accessible version of the survey is also available for family members or care givers of people with Down syndrome.

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.

NHS Digital are providing regular updates on ICD-10 to support the capture of quality data in relation to COVID-19.

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.

Applicable for the UK, NHS Digital have provided new terms for COVID-19.

The Professional Records Standards Body (PRSB) and NHS Digital have guidance for healthcare professionals on how to correctly code COVID-19 cases using SNOMED-CT. The guidance contains 13 information categories including exposure to coronavirus, diagnosis and complications, test requests and results.

The COVID-19 SNOMED-CT codes comprise the following groups, which system suppliers are currently incorporating into their systems:

  • Risk category
  • Isolating / shielding advice
  • Encounter and advice
  • Exposure
  • Signs and symptoms
  • Swabbing
  • Tests and test results
  • Clinical and test result interpretations / disease labels
  • Severity assessment
  • Complications
  • Vaccination.

The NHS Digital SNOMED-CT browser is available online

NHS Digital are providing regular updates on SNOMED-CT coding to support the capture of quality data in relation to COVID-19.

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 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.

Latest updates on this page

Updates in this version (published 6 July 2020)

  • Impact on paediatric servies: details of NHSE portal for collecting data on children and young people's delayed presentations within Emergency Departments has been removed as this study is no longer active

Updates in this version (published 19 June 2020)

  • Updated links to data collection and surveillance studies. 
  • Added link to the Trisomy 21 Research Society study into the impact of COVID-19 among people with Down syndrome.

Updates in version published 5 June 2020: