NDRS Newsletter │ 24 July 2020
Welcome to the monthly NDRS newsletter
Each month we share the latest news from the National Disease Registration Service (NDRS) including new data releases, publications and events.

In this month's edition, we share an update on the NDRS response to COVID-19, the release of the 2019 CPES results, the new guide to the Simulacrum, and the publication of the NABCOP Annual Report and Patient and Public Report.

The National Disease Registration Service is part of Public Health England and collects data from the NHS about cancer, rare diseases and congenital anomalies in England.

It is made up of the   National Cancer Registration and Analysis Service (NCRAS) and the National Congenital Anomaly and Rare Diseases Registration Service  (NCARDRS). The NDRS uses data to detect changes in the health of the population and help the NHS improve the diagnosis and treatment of these diseases.

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Update on the NDRS response to COVID-19
NDRS staff continue to support the PHE COVID-19 response in many ways, this has led to a reprioritisation of some of our core business. We now have a number of projects aimed at providing up-to-date data to support clinical and policy decision making in relation to the COVID pandemic. These are:

  • A RTDS dashboard which provides a suite of metrics about radiotherapy activity relevant to COVID-19. This is designed to support decision making on cancer services and is now available via the Cancerstats2 platform (currently only for those with nhs.net access).
  • A SACT dashboard which provides a suite of metrics about chemotherapy activity relevant to COVID-19. This will also be made available via the Cancerstats2 platform, due for release Friday 24th July.
  • A proxy registration dataset for 2020, aimed at supporting near real-time analysis in relation to COVID-19. This is in development and once finalised the data will be available through the Office for Data Release.

We will continue to deliver core activity such as data release and national and official statistics including cancer stage, survival and emergency presentations. We have taken the decision to pause activity on a small number of projects including the Get Data Out programme which we hope to resume as soon as capacity starts to return. If you have any queries in relation to our work programme, please contact us at [email protected].
Data releases and publications
2019 CPES results made public
Last month, the 2019 National Cancer Patient Experience Survey (CPES) results were released. The survey is designed to monitor progress on cancer care, drive local quality improvements, assist providers of cancer care and inform the work of charities and stakeholders.

The results presented a slight increase in the levels of satisfaction with care. Data and dashboards are available to view on the Picker website.
Emergency presentation metric updated
We have updated the emergency presentation metric to include data up to September 2019.

The data is available by CCG, Cancer Alliance and cancer site. It shows that there was a small decrease in the number of cancers diagnosed as an emergency presentation with the one year average at 18.4%, down by 0.3% compared to the previous quarter.
Routes to Diagnosis dataset updated
The Routes to Diagnosis dataset has been updated to cover 2017 incident cancers. The proportion of cancers diagnosed as emergency presentations fell to 18.8% in 2017 while Two Week Waits increased to 38.6% for all malignant cancers.

The data is broken down by Route, site and year, followed by sex, age or CCG and is available to download from the Routes to Diagnosis webpage.

A high level summary of the results is also available.
Guide to using the Simulacrum and submitting code

The document explains how external researchers, including charities, academics, NHS organisations and industry partners can use the Simulacrum data to understand the structure and content of the cancer data held by NCRAS, before making data access requests.
RTDS COVID dashboard on Cancerstats2
We have created a RTDS COVID-19 dashboard to help Radiotherapy Departments understand the changes in patient activity and fractionations being given across the country.

The dashboard presents broadly grouped dose and fractionation regimens being given per tumour site broken down to a Trust level. It includes data from 2019 up to and including April 2020, and we will update it on a monthly basis.

Please note, this resource is only available to those with access to Cancerstats2.
Local Tobacco Profiles updated
This month, PHE updated the Local Tobacco Profiles for England, including NCRAS data.

This data presents the extent of tobacco use, tobacco related harm, and the measures being taken to reduce this harm at a local level. It is intended to help local government and health services assess the impact of tobacco on local populations and inform commissioning and planning decisions to tackle tobacco use.
The power of genomic cancer data
Cancer Research UK's latest article explores how linked genomic and patient cancer registry data can advance research and guide treatment decisions.

The article details how NDRS and Cancer Research UK are working together to help scientists, clinicians and patients unleash the potential of linked cancer and genomic data, following on from a joint workshop held towards the end of 2019.

The results of the National Lung Matrix Trial, published recently in Nature, highlight the power of genomic profiling for precision medicine.
NLCA findings from 'spotlight' audit published
The National Lung Cancer Audit (NLCA) has this month published its findings from a 'spotlight' audit on patients with stage I-IIIa lung cancer who did not receive treatment with curative intent.

The NDRS are the data collection partner for the NLCA and developed a portal for this 'spotlight' audit for Trusts to enter the additional data items required.

This is the third 'spotlight' audit carried out by the NLCA and NDRS, and investigated why fewer than expected patients with early-stage lung cancer are receiving treatment with curative intent. It also explored the real-world management of patients with stage IIIa disease.
NABCOP 2020 Annual Report and Patient and Public Report published
We are pleased to announce that the National Audit of Breast Cancer in Older Patients (NABCOP) 2020 Annual Report has been published online.

The report describes the process and outcomes of care for women aged 50 years and over, diagnosed with breast cancer between 1 January 2014 and 31 December 2018 in England and Wales. NDRS provide the data for England.

Alongside this, the NABCOP team have published their 2020 Patient and Public Annual Report. This report is for women with breast cancer, as well as the general public, to provide information about the care the NHS provides to older women diagnosed with breast cancer and whether this could be improved.

If you have any queries about the report please contact NABCOP NDRS Project Manager, Karen Clements.
Other news
Wider Impacts of COVID-19 on Health (WICH) monitoring tool
PHE have released a monitoring tool which looks at the indirect effects of the COVID-19 pandemic on the population's health and wellbeing.

The latest metrics to be added to the tool include:
  • change in alcohol consumption
  • change in access to care
  • rate of people claiming benefits
  • measures of employment and income

This resource is a central repository for metrics scoped by the health intelligence teams at PHE, as new data become available.
NDRS to become accredited with the PIF Tick
NDRS is working towards gaining the Patient Information Forum (PIF) Tick which is the new UK-wide mark for health information.

The Tick accreditation ensures that organisations that produce information resources for wide audiences have gone through a professional and robust production process. Once we have completed the accreditation process we will be able to include the PIF Tick quality mark on the resources we produce. We will keep you updated with our progress.
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