Flawed NHS records distort our view of ethnic health gaps, study shows

The NHS is failing to record the ethnicities of an excessive and growing proportion of patients, obscuring the true picture of health inequalities in England.

This could mean deaths and hospitalisations are being miscounted during the pandemic at a time of widespread concern over mortality gaps between ethnic groups, a new Nuffield Trust report supported by the NHS Race and Health Observatory warns.

Ethnicity coding in English health service datasets, finds that in 2019/20, 13% of inpatients and 17% of outpatients did not have a known, stated ethnicity recorded. The proportion of ethnicity entries that are “not stated” has risen over the last 8 years for both inpatient and outpatient records.

The report is based on analysis of hospital, A&E and community services data. It finds that:

• The proportion of records with a valid ethnic group code varied markedly between providers, from 53% to almost 100%.
• More than a third of patients receiving planned treatment in the private sector did not have a known, stated ethnicity recorded – far more than in NHS trusts.
• For patients with multiple contacts with the NHS, patients in minority ethnic groups were more likely to have a different code assigned on different occasions, suggesting inaccuracy.
• A comparison of NHS data with estimates of ethnicity in the general population suggests that too many ethnic minority patients are being lumped into “other” categories – for example, Other Asian rather than Bangladeshi, or Other black rather than Black African.
• Conversely, far fewer patients are recorded as having “Mixed” ethnicity than would be expected based on the ethnicity of the general population.

The authors note that NHS guidance has not been updated since 2001, and is out of step with how populations groups are defined in the 2011 and 2021 censuses.

The paper calls for urgent action from NHS bodies locally and nationally. It recommends that the Care Quality Commission should take into account how good or bad the coding of patients’ ethnicities is in its inspections and ratings of hospitals and other care providers.

The authors suggest NHS England should work with partners to urgently issue new guidance, including new categories that line up with the recent Census and new protocols for asking patients which group they identify with. Meanwhile, the paper warns, analysts and researchers should recognise the weaknesses in the data when they try to work with it.

Nuffield Trust Deputy Director of Research Dr Sarah Scobie said:

“At a time when ethnic disparities are playing an important role in a terrible pandemic, and with a new cross-ministerial board supposed to tackle health inequalities, it is unacceptable that we have obvious gaps and distortions in the record of which ethnic groups patients belong to. It is even more troubling that the situation seems to be worsening.

“We won’t be able to stop the unequal impacts we see during the pandemic from happening again unless we can accurately tell what they are. We may also be misunderstanding important differences in disease risks and patterns of illness – and taking the wrong decisions as a result.”

NHS Race Health Observatory Director Dr Habib Naqvi said:

“It is essential that the NHS commit to improving the recording of patient ethnicity data so we are better informed to meet the needs and challenges of our diverse communities. At this crucial time, healthcare providers need to learn lessons from the pandemic and be able to draw on factual insight from accurate datasets, such as how the virus impacts on different, ethnic communities so we can plan, protect and prioritise those most at risk from disease in the future.”