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Mortality data review
The mortality data review provides an overview of the data sources and systems that are used to record deaths in England, including changes to death reporting processes in light of the coronavirus (COVID-19) pandemic.
This report provides an overview of the data sources and systems that are used to record deaths in England. It covers both the civil registration data flows and those from the health and care system. The report's analysis examines:
- Civil Registration data from the Office for National Statistics (ONS) which is the statutory, official record of the time, location and cause of death
- “Informal” death notifications data collected through the Personal Demographic Service (PDS) managed by NHS Digital which can provide an early record that an individual has died
Summary of the review
The statutory process for reporting deaths
The statutory process for reporting deaths in England is through the civil registration route. This process, while comprehensive, has not been designed for speed.
23% of deaths are registered within 2 days of occurring, rising to 77% within 7 days. Legally 5 days are allowed for a death to be registered (increased from 2 days in 2018) with the timing affected by weekday registry office opening hours and the need to report certain deaths to the coroner.
However, even deaths registered within the statutory 5-day requirement can take up to 20 days to appear in official reports from the Office for National Statistics (ONS) due to the weekly reporting cycles that ensure that data is complete and quality assured for the latest period.
To improve processes for reporting deaths during the COVID-19 period, a number of changes were made, including the ability to verify that death has occurred via remote consultation, and electronic sending of Medical Certificates of Cause of Death (MCCD) to the local registry office, with telephone rather than physical appointments with the next of kin to complete registration. It appears that these measures have reduced the time it takes to register a death, although impact cannot be verified at this early stage
Temporary processes have been established to support daily reporting
During the COVID-19 period, temporary processes have been established to support daily reporting, but this requires considerable effort.
In response to COVID-19, a number of data capture systems were established to collect data related to COVID-19 deaths, both in hospital and through the community. This care-setting specific data capture combined with lab testing allows the reporting of ~50% of deaths within 1-3 days of the death occurring. Although this process offers significant improvement to statutory reporting timelines, it requires substantial effort by Public Health England (PHE) to combine the data sources, remove duplicates and generate the daily reports. Limitations in reporting and data collection also mean figures are provisional and are updated as new deaths become known.
Healthcare IT systems may be used to record deaths before they are formally registered
These systems, although timely, are not complete because they are not an enforced method of reporting deaths.
As well as local recording of death in a patient’s medical records, which is not routinely shared with other systems, early indication of a death can be obtained from an “informal” death flag on NHS Digital’s Personal Demographics Service (PDS). 48% of deaths are notified to PDS within 2 days, rising to 71% within 7 days. The purpose of the informal death flag is administrative, for example, to suppress communications to patients who have died or cancel appointments. It is not an enforced death reporting method.
The informal death flag on PDS can be set by any NHS Spine-connected institution. It is predominantly set by Primary Care institutions but is also set by a number of Secondary Care organisations. Only approximately 80% of registered deaths are captured by this method, meaning that a number of organisations do not use the flag. This analysis has shown that the dataset has national coverage across all places of death such as home, care home and hospital, with no significant variation in timeliness or completeness.
This analysis has identified a number of areas for improvement within the system
Areas for improvement identified as part of the analysis include increasing the use of informal PDS flag and expediting data flows through the civil registration route, including by providing additional weekend administrative support.