RSS president John Pullinger has written to the National Statistician Jil Matheson, to the director general of the Office for National Statistics Glen Watson, and to the chief executive of the Health and Social Care Information Centre (HSCIC) Tim Straughan, re-affirming the Society’s concern about delayed registrations of deaths in England and Wales.
In a policy statement issued last year on 25 January 2012
the RSS had expressed concern that delayed registration of deaths in England and Wales posed a risk to public health by potentially undermining the statistics used for public health monitoring.
In England and Wales, coroner-referred deaths are not registered until the cause of death has been established. However, if a death is subject to an inquest, it may not be registered for months or even years, while awaiting the coroner’s verdict. Moreover, the ONS and HSCIC are essentially unaware that these deaths have even occurred. The Society points out that around 10,000 deaths every year in England and Wales (including one in five deaths in England and Wales at 5-44 years of age) are not registered until at least six months after the event. Late registration affects premature deaths in particular, including some specific causes of death, such as drug-related deaths and suicides.
The RSS has called for the registration of deaths to be uncoupled from the registration of cause of death in England and Wales (and has set out ten arguments against late registration
in full) – this, however, requires legislation. Therefore, the RSS also recommends that until legislation is changed, users of these statistics, including researchers, are properly informed of the discrepancy and are fully aware of which datasets are affected by it.
Former RSS vice president, Professor Sheila Bird, who is leading the Society’s work on this issue, explained the significance of this policy: ‘At least half of the drugs-related deaths registered in 2011 would have occurred in calendar years preceding 2011. The potential for registration-delays to confound underlying calendar-year trends in England’s cause-specific mortality needs to be addressed for the good of our public health.
‘In novel epidemics, referrals to coroners are likely to alter, which means that chief medical officers need the back-stop of knowing that all deaths in their nation, without exception, are registered promptly so that follow-up inquiries can be made as a matter of urgency to establish if the novel pathogen might have been implicated.’
The RSS argues that such discrepancies between the year of death and the year in which the death is registered as occur in England and Wales can impede discovery in record-linking studies and hinder safety monitoring in randomised controlled trials as well as obscure trends in mortality rates. ‘Record-linkage generally requires us to establish the survival-status of participants at a specified date,’ Sheila Bird explains. ‘To get the required information about deaths in England and Wales, I may have to delay analyses by two years or more, which is unacceptable.’
She added: ‘The RSS is particularly grateful to Patrick Mercer OBE MP who, through a series of parliamentary questions, has helped us to reveal the extent of the problems posed by late-registration of deaths.’
The latest statement by the RSS can be read in full here