How data is supporting the COVID-19 response
Updated: September 2020
Information is critical to the response to COVID-19. Key
pieces of data extracted from health and care settings, combined with information
provided by patients themselves, will be used in new ways to care for people
and help the NHS and social care to better understand and respond to the virus.
Protecting your confidentiality
These are unusual times but data must always be used lawfully and, despite the pandemic resulting in a broader legal allowance of data collection and use, the same rules that protect citizen privacy apply to how data is used during a pandemic.
These rules include collecting the minimum amount of information required; not using the information collected for the COVID-19 response for unrelated purposes; ensuring appropriate safeguards are in place and only keeping the information for as long as necessary.
Being clear about how information is being used
We must and will be transparent about what we’re doing. We will regularly update this document so you can stay updated on how data is being used. We will also publish a register of those who are provided with access to the information collected nationally and the reason why.
Here are some examples of how information is being used to support the response to COVID-19:
Ensuring information is available to support the care of patients/service users
To ensure that those providing care for patients/service users have access to up-to-date information during the COVID-19 period, a comprehensive medical summary from an individual’s GP records is being made available to other GP practices, NHS 111 and other health and care services.
This means that GP practices which provide care to new patients in the event that a nearby practice temporarily closes due to an infection, or health and care professionals who provide advice to people contacting NHS 111, will have the information they need. Controls will be in place to ensure that only those caring for patients/service users have access.
Remote patient monitoring
Medopad, a remote patient monitoring app has been developed to monitor and safely manage confirmed and suspected COVID-19 patients who have been considered well enough to be managed at home. Patients input information such as heart rate, temperature and potentially blood oxygen levels so clinicians can closely track the progress of their condition and bring them into hospital in a timely manner if and when required. This will reduce the amount of people attending the hospital environment and reduce the risk of spreading the virus further.
Supporting vulnerable people
Using GP records of patients with certain underlying health conditions NHS Digital has compiled a list of people who are the most vulnerable to COVID-19. This is known as the Shielded Patient List, and is being used to support those that are the most vulnerable and have identified themselves as requiring additional support. Information about how this list has been compiled and which organisations it has been shared with and for what COVID-19 related purpose can be found on NHS Digital's website.
Planning our response to COVID-19
To understand and anticipate demand on health and care services, we need a robust picture of the virus, how it’s spreading, where it might spread next and how that will affect the NHS and social care services. On the supply side, we need to know where the system is likely to face strain first, be that on ventilators, beds or staff sickness. This includes metrics such as:
- Current occupancy levels at hospitals, broken down by general beds and specialist and/or critical care beds
- Current capacity of A&E departments and current waiting times
- Statistics about the lengths of stay for COVID-19 patients
NHS England and NHS Improvement have established a secure NHS COVID-19 Data Store, which brings together and protects all of the accurate, real-time information necessary to inform decisions in response to the current pandemic in England. This includes data already collected by NHS England, NHS Improvement, Public Health England and NHS Digital. All the data held in the platform is subject to strict controls that meet the requirements of data protection legislation. Further information about the NHS COVID-19 Data Store is here.
COVID-19 has led to an increased demand on general practices including an increasing number of requests to provide patient data to inform planning and support vital research on the cause, effects, treatments, and outcomes for patients of the virus. To support the response to COVID-19 and reduce the burden on GP practices, NHS Digital will collect healthcare information from GP records so that requests for access to GP healthcare data can be directed to them, as the national safe haven for health and social care data in England, rather than GP practices. Further information about this is here.
Using health data responsibly and safely for research and innovation
Research organisations across England and the rest of the UK are stepping up efforts to make use of health data to answer key questions about COVID-19. They hope to make discoveries that will save people’s lives.
To do so requires safe and secure access to different types of health data, including patient health data and information from clinical trials, biomedical and health research studies.
Here are some examples of how data is being used for this vital research.
Health Data Research UK is the national institute for health data. It is bringing together researchers from across the UK to connect health data research activities, speed up and enable access to priority data that is relevant for COVID-19 research and leverage research expertise to address the wider impact of the COVID-19 pandemic, including supporting vulnerable groups. It is using information from the research community to prioritise the most important questions that need health data and is reporting this weekly to the Scientific Advisory Group for Emergencies (SAGE).
Examples of COVID-19 data research include using data at scale to:
- understand the impact on people with underlying health conditions through development of an online risk calculator
- discover COVID-19 treatments through the nationwide “RECOVERY” clinical trial testing three drugs
- delineating the adverse impacts of the COVID-19 pandemic on patients with cancer and cancer services
- contributing to international efforts in determining whether medications taken by those with pre-existing conditions exacerbates COVID-19 symptoms, e.g. ACE-inhibitors
UK Biobank is studying how the health of 500,000 people is affected by their lifestyle, environment and genes. All participants have volunteered to be involved. This resource could offer further insight into COVID-19 e.g. the factors which make one individual experience more serious symptoms compared to another. To support this COVID-19 work, we have enabled UK Biobank to access data held by GP practices on those individuals who have agreed to be part of the UK Biobank programme.
The National Perinatal Epidemiology Unit at the University of Oxford is undertaking a study to understand the complications of COVID-19. Little information is available about how the virus affects mothers and new-born babies and it is not clear how best to care for mothers and babies affected. Little is also known about how babies become infected with COVID-19 and whether it transmits from mothers to their baby(s) while they are still pregnant, during labour and birth, or whether the infection occurs following birth. The British Paediatric Surveillance Unit (BPSU) will collect via a survey, information from doctors who have looked after a new-born baby or mother with COVID-19. This information will be linked with existing data, such as the National Neonatal Research (NNRD), the Paediatric Intensive Care Audit Network (PICANet), and the national surveillance of maternal and perinatal deaths (MBRRACE-UK) to ensure a complete understanding of the cases. This will mean we can provide better care to mothers and babies and the best advice to pregnant women about the effects of COVID-19 on their baby.
NHSX, the British Society of Thoracic Imaging (BSTI) and Royal Surrey NHS Foundation Trust have formed a joint partnership in order to create a national database of chest X-ray, CT and MRI images to understand more about the disease and support patients better.
As time goes on, we will update this information to cover new ways in which data is being used to support the COVID-19 response. This may include examples of research into COVID-19: to understand the virus better, develop potential treatments / a vaccine and inform our response to future pandemics.