Data Services

We are directed to securely collect data from across health and care, with approximately 240 collections from more than 10,000 providers including primary, secondary, community, maternity, mental health and adult social care. The raw data is transformed and standardised, making it more usable and valuable. This includes coded mapping, improving data quality via validation and exclusion checks, linking datasets and the creation of derived values and dataset products. We make that data available in national datasets as well as more bespoke analyses, statistical publications, clinical indicators and audits. A large number of stakeholders use it. There are 950 live data sharing agreements with a variety of organisations including 350 research and academic bodies, 41 public bodies, 56 NHS trusts, 400 clinical commissioning groups and local authorities across the country. In 2021-22, we focused on driving up data quality and improving access, while always protecting the privacy of the people whose data we hold.

Our statistical publications offer crucial insights into the health and wellbeing of the public and support research, policy development and operational planning. We produced 80 statistical series in 2021-22 and approximately 270 individual publications.

In November 2021, we published the statistics from the National Child Measurement Programme as part of a long-running series that tracks childhood weight categories. This year’s publication revealed a significant increase in obesity rates among primary school-aged children, with a rise of around 4.5 percentage points between 2019-20 and 2020-21. We are supporting a request for in-year monitoring to help understand the trend as children returned to school following the relaxing of COVID-19 restrictions.

In September 2021, we published the results of the Mental Health of Children and Young People in England report. This long-standing survey has been run more frequently to follow the mental health of children and young people during the coronavirus pandemic. It showed the incidence of mental disorders among children remained stable in 2021 after a previous rise. The survey found that 1 in 6 children in England had a probable mental disorder in 2021 – a similar rate to 2020, but an increase from 1 in 9 in 2017.

We are also commissioned to run clinical audits and registries for the health and care system in England. Clinical audit is a way to find out if healthcare is being provided in line with standards and allows care providers, commissioners and patients to know where their service is doing well and where it can improve. Working collaboratively with clinical specialists, patient representatives and universities, our Clinical Audits and Registries Management Service supported 8 audits and registries over the past year. In 2021-22, this included the wide-ranging National Diabetes Audit programme, which has been used extensively as part of the national COVID-19 recovery plan, and the establishment of the new National Obesity Audit, which provides data to help commissioners improve prevention and care for people who are overweight or obese.

Our Data Access Request Service (DARS) gives access to health and social care data for authorised, non-direct care uses. Its online service now gives customers the ability to apply for access to more than 50 different data sets and, during the last year, we made 21 new data sets available, including Mental Health of Children and Young People, Improving Access to Psychological Therapies and access to more current hospital data through the Uncurated Low Latency Hospital Data Sets for Admitted Patient Care, Outpatient and Critical Care. DARS supported 939 requests to use health and social care data and approved 846 data sharing agreements. These included 186 requests for COVID-19 purposes.

In line with the direction set out in the Department of Health and Social Care’s ‘Data Saves Lives’ strategy, our Trusted Research Environment (TRE) service provides authorised users with remote access to linked, de-identified health data without data ever leaving our secure data environment. More than 20 linkable data sets are now available and 20-30 projects are at various stages of completion. Researchers from across the NHS, government, academia and industry are currently using the TRE to investigate the impact of COVID-19 from a range of perspectives, including effects on cardiovascular disease and cancer. While the TRE service was initially focused on supporting COVID-19 research, we are now developing it to provide a more flexible and scalable solution to support a wide range of studies. This will become the default route for accessing data held by NHS Digital, providing greater transparency and control over how patient data is used and allowing us to support research while reducing risks to privacy.

In 2021-22, we continued to play a key role in supporting the national response to COVID-19. We ensured that information about vaccinations flowed seamlessly into GP records and provided data to identify people who could benefit from COVID-19 therapeutic treatments, supporting event driven email and SMS messaging to contact them. Our new Population Health platform identified more than 170,000 eligible patients and helped get treatments to 45,000 patients. The platform is also supporting GP referral to the PANORAMIC national study, which aims to find out if new antiviral treatments for COVID-19 in the community reduce the need for hospital admission. GPs can use the Population Health platform to view a list of patients who have tested positive and may be eligible to take part – nearly 23,000 patients had been recruited at the end of March 2022. We also continued to support the Oximetry@home programme with data collection and programme evaluation, supplying the data needed to find patients who would benefit from self-monitoring at home with a pulse oximeter. As of May 2022, more than 160,000 people had been monitored.

Our Terminology and Classifications service defines and supports clinical coding best practice. In 2021-22, we published 52 NHS Business Services Authority Dictionary of Medicines and Devices (dm+d) weekly releases, 13 SNOMED CT UK Drug Extension releases, and worked to accommodate important COVID-19- related content such as vaccines given overseas. We also authored and published 5 SNOMED CT UK Clinical Edition releases.

As part of the government’s strategy to transform the public health system in England, the management of the National Disease Registration Service (NDRS) transferred from Public Health England to NHS Digital on 1 October 2021. The service collects data on patients with cancer, congenital anomalies and rare diseases and is made up of 2 disease registers: the National Cancer Registration and Analysis Service and the National Congenital Anomaly and Rare Disease Registration Service. In 2021-22, NDRS created a new rapid cancer registration dataset and launched COVID-19 cancer dashboards showing changes in cancer incidence and treatments during the pandemic. The publication of the RECORDER study showed that people with rare autoimmune rheumatic diseases were 1.5 times more likely to have a positive COVID-19 PCR test in the first wave of the pandemic compared to the general population and were 2.4 times more likely to die of COVID-19 complications. In 2021, the NDRS genomics team published the first Lynch syndrome dashboard, showing rates of germline genetic testing in colorectal and endometrial cancer. These dashboards help with the prevention and early detection of cancer.

The NHS DigiTrials service is helping clinical trials to use NHS Digital data much more efficiently, reducing the time, effort and cost of developing new drugs, treatments and services. During the past year, we have supported the NHS-Galleri trial, the world’s largest trial of a new blood test that can detect more than 50 types of cancer before symptoms appear. It is run by the Cancer Research UK and King’s College London Cancer Prevention Trials Unit, in partnership with the NHS and healthcare company GRAIL, and is using NHS DigiTrials to support recruitment, recalls for follow up and the tracking of patient outcomes using NHS Digital data, including data from NDRS. By using routinely collected, national NHS data sets to identify the right people, the burden on frontline staff is reduced. The NHS DigiTrials service helped to recruit a representative population into the trial (for example, by giving access to good distribution across all socioeconomic groups) to ensure the test works for everyone. 140,000 people from across the UK were recruited for the trial, making it the fastest ever recruiting large-scale randomised trial.

In April 2021, the Pelvic Floor Registry began collecting device and outcome-based data from all health care organisations undertaking pelvic floor procedures. This supported the government’s response to the report of the Independent Medicines and Medical Devices Safety Review, ‘First Do No Harm’. In parallel, the Surgical Devices and Implants Information System began to collect core device data from all health care organisations across all specialties in England to address requirements raised by the report. An Information Standards Notice was published in February 2022 specifying the surgical device and implants data that must be routinely captured in theatre systems.

The Medicines Information System project launched a Medicines in Pregnancy dashboard building on the analytics and reporting published in 2020-21 around the use of valproate and other anti-epileptics prescribed during pregnancy. The interactive dashboard provides better insight to support regulatory and clinical decisions.

In 2021-22, we continued to build our open data offering. We provided a secure, scalable mechanism for giving access to aggregated data for a variety of public and private uses through our visualisation and dashboard capabilities. Our public dashboard hub has served millions of users and our private dashboards have supported hundreds of health and policy professionals. In summer 2021, we created a secure environment to provide a patient-level GP COVID-19 vaccine dashboard to help GP practices and primary care networks increase vaccination uptake across their local communities. Users accessing the dashboard cover 80% of GP practices. In autumn 2021, we launched our GP Appointments Data dashboard, providing information about scheduled activity and GP appointments down to the practice level. This highlights data quality issues and gives local providers vital management information about their own activity.

Our TRE service provides approved researchers timely and secure access to health and care data, allowing them to collaborate, link data and share code and results, all within the same research project. Researchers from across the NHS, government, academia and industry are currently using the TRE service to investigate the impact of COVID-19 from a range of perspectives.

Angela Wood, Professor of Health Data Science at the University of Cambridge, has been collaborating with the British Heart Foundation Data Science Centre (hosted by Health Data Research UK) through the CVD-COVID-UK consortium to investigate the relationship between COVID-19 and cardiovascular disease.

"Using information from 46 million adults, we have been able to study the rare but serious clotting events after the COVID-19 vaccination. However, we’ve shown these side effects are outweighed by the vaccination benefits of reducing coronavirus morbidity and deaths. We are also studying the long-term effects of COVID-19 on people’s vascular health to pinpoint if or when they return to their pre-COVID-19 risk level".