Better use of data can help to prevent future deaths (2024)

What is recorded, about whom, and for what purpose, tells us a lot about a society, say Carl Reynolds and Habib Naqvi

In 1611, in the wake of the bubonic plague, King James I chartered the Company of Parish Clerks to produce weekly bills of mortality.1 These listed weekly burial figures and causes of death for the parishes of London. When someone died, the bell of the parish church was rung, and the sexton (who had responsibility for preparing the grave) alerted the searchers. The searchers were employed by the church to determine the cause of death. One shortcoming of this approach was under-reporting and exclusion of those who were not members of the Anglican church or who were too poor to pay their fees.

Are things any better in the reign of King Charles III? While the inclusivity and quality of mortality statistics has improved significantly with time, both continue to be an issue. Since 2009, coroners have had a new duty to complete Reports to Prevent Future Deaths. Schedule 5 of the Coroners and Justice Act 20092 explains the coroner’s responsibility to make reports to a person, organisation, local authority, government department, or agency where they believe that action should be taken to prevent future deaths. These are then made public to help prevent future deaths by making this information accessible and holding organisations to account. The process relies on the judgment of those involved, who cannot reasonably be expected to capture every preventable death. Deaths that are identified are likely to represent the tip of the iceberg.

It is widely recognised that Black and ethnic minority patients in the NHS experience higher levels of avoidable harm and even death.3 The latest maternal mortality statistics report that Black women are four times more likely to die during pregnancy than White women,4 while recent neonatal mortality statistics report that Black babies are three times more likely to die than White babies.5 One might expect ethnic inequality to be considered in Reports to Prevent Future Deaths, but, to our knowledge, it is impossible to do this, at least by using publicly available data, which do not include ethnicity. There does not seem to have been interest in monitoring ethnic inequality in Reports to Prevent Future Deaths thus far in the UK.

Until recently, the content of Reports to Prevent Future Deaths was not publicly searchable since they have historically been published as PDF documents. We extracted the text from the PDFs and made it publicly searchable for free at deathlessons.org. This allows, for example, you to search “asthma”6 and review Reports to Prevent Future Deaths that mention asthma to identify common themes. Indeed, asthma is a good example, and our search found 18 preventable asthma deaths over a 10 year period; more than half of these deaths were in children.7

The cases of preventable deaths recorded include Ella Kissi-Debrah, who died aged 9 years after being exposed to unsafe levels of air pollution.8 Nasar Ahmed died aged 14 years after his allergy plan was not followed at school when he became unwell while in detention.9 Tae’jelle Francois died after having a respiratory arrest in an emergency department waiting room while still waiting for assessment.10 Ella May Clark died after she was late for an emergency appointment and her GP declined to see her.11 Dimitar Shtarbov died after doctors saw and discharged him without understanding that he had asthma because he did not speak English and they did not use a translator,12 and Ian McDonald-Taylor died in police custody after his complaints about difficulty breathing were not believed by police.13 Most of the deaths seem to be in people from Black and ethnic minority groups based on media reports. These deaths highlight inequities and structural factors that make some people at much higher risk than others.

There is obvious value to society in knowing who dies from preventable causes and the reasons for their death. This information can empower us to recognise our moral and professional duties to prevent future deaths and tackle longstanding inequalities. However, this is not a given, and systems need to be designed with accountability and assurance mechanisms. While this should include contractual and regulatory assurance, we would like those involved to focus on this agenda because they want to, and not just because they have to. Focusing on values and the evidence base are therefore critical.

The work of the NHS Race and Health Observatory is informed by these assertions and by user-focused research and evidence. For example, as part of the Observatory’s Digital Sickle Programme, we are developing a personalised digital care plan for patients with sickle cell anaemia that aims to improve healthcare delivery and experience during acute painful sickle episodes. We will be testing the idea that making sickle care plans readily accessible to healthcare professionals, across the system and in a trustworthy format, together with capturing basic information such as who is using (or not using) care plans, will improve accountability and patient experience and lead to a reduction in preventable deaths.

We find ourselves at a significant point in history for our health service. We hope that it will come to be seen as the moment when society rose to the challenge of tackling the scale of inequality embedded in the delivery and experience of healthcare by using robust data and insight.