End late registration of fact-of-death in England and Wales

Abstract

Agreement about the priorities for medical science1McCall B UK medical research gets political.Lancet. 2015; 385: 1381-1383Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar should include commitment to end the late registration of fact-of-death in England and Wales. In England and Wales (also Northern Ireland), if deaths are referred for inquest, fact-of-death is not registered with the Office for National Statistics (ONS) until the inquest verdict has determined cause of death. In England and Wales: 10 000 deaths per year are not registered for at least six months. With broad scientific support, including from Government Chief Scientists, National Statisticians and Chief Medical Officers, the Royal Statistical Society (RSS) has called for the dead in England and Wales to be counted promptly and properly, as in Scotland.2Bird SM Editorial: Counting the dead properly and promptly.J R Stat Soc. 2013; 176: 815-817Crossref Scopus (14) Google Scholar On RSS's behalf, I wrote in February, 2015, to five UK party leaders (and to Scotland's First Minister): “Late registration of deaths is an affront to the statistical system in England and Wales; and seriously handicaps record-linkage studies, which fundamentally need to know—without delay (as in Scotland)—when deaths have occurred. If in government, will you please commit to legislating to end the late registration of deaths in England and Wales?” To date, with the exception of Scotland's First Minister, none of the five replied. In Scotland, fact-of-death is registered within eight days of death having been ascertained. National Record of Scotland knows for how many deaths the determined-cause is outstanding and for what proportion of deaths, in 2013 say, the waiting time for determined-cause has exceeded 91, 182, or 365 days. For England and Wales, ONS can answer neither question; nor can the Chief Coroner, although preliminary data suggest that the Coroners Court Reforms in mid-2013 may have halved the proportion of deaths that wait more than one year for determined-cause,3Office for National StatisticsPublished ad hoc data: health, requests during March 2015.http://www.ons.gov.uk/ons/about-ons/business-transparency/freedom-of-information/what-can-i-request/published-ad-hoc-data/health/march-2015/index.htmlGoogle Scholar which is welcome news for bereaved families but fails to fix a death-registration system that is not-fit-for-purpose for statistics or epidemiology. Late registration of deaths is age-related (see appendix); it is also cause-related. One in five premature deaths (between 5–44 years) in England and Wales is not registered for at least six months. Half of all drugs-related deaths and suicides registered in England and Wales in 2014, will have occurred in years preceding 2014. Reporting these mortality statistics by registration-year seriously confounds calendar-year trends. As the ONS has been at pains to point out,4Office for National StatisticsStatistical Bulletin. Deaths related to drug poisoning in England and Wales.http://www.ons.gov.uk/ons/dcp171778_375498.pdfDate: 2013Google Scholar, 5Office for National StatisticsSuicides in the United Kingdom, 2013 Registrations.http://www.ons.gov.uk/ons/dcp171778_395145.pdfGoogle Scholar reporting mortality statistics by registration-year,2Bird SM Editorial: Counting the dead properly and promptly.J R Stat Soc. 2013; 176: 815-817Crossref Scopus (14) Google Scholar rather than by calendar-year of death, disguises rather than fixes late registration of deaths. When research teams ask the ONS or Health and Social Care Information Centre about the survival-status of those whose data we are privileged to analyse, we are told about registered-deaths—not about all deaths in England and Wales that actually occurred prior to the analysis-date. In the N-ALIVE trial, we want to know about drugs-related deaths that occurred within 12 weeks of participants' prison-release, essentially by 8 March 2015, but—due to late registration of deaths—we shall not know this for sure even by the end of 2016. Record-linkage studies have enormous potential1McCall B UK medical research gets political.Lancet. 2015; 385: 1381-1383Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar but almost always require linkage to death registrations which, by being unfit for purpose in England and Wales, undermines or delays their discovery potential. Will The Lancet readers and UK's Farr Institute of Health Informatics Research lobby for this basic and inexpensive reform—for the dead to be promptly registered in England and Wales, and thus properly accounted for UK-wide, which matters not only for official statistics but for the timeliness of record-linkage and randomised studies alike. SMB leads for the Royal Statistical Society on the need for legislation to end the late registration of deaths in England and Wales. Download .pdf (.11 MB) Help with pdf files Supplementary appendix Data donation after deathSheila Bird (May 9, p 1830)1 recently pointed out how late registration of death in England and Wales seriously disabled statistical and epidemiological studies. Another serious obstacle to essential observational research is the accessibility of precious medical data after a person's death. To prevent waste of medical research data, we suggest that all citizens should be encouraged to donate data after death just as people donate organs posthumously, as was previously suggested in relation to brain researchers' personal data. Full-Text PDF