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Which groups are rendered invisible in health data? 

Written by Wed 9 Mar 2022

The ongoing pandemic has turned healthcare data from a niche subject to one of national importance. From the regular Downing Street briefings where the Chief Medical Officer for England, Chris Whitty, explored COVID-related data in-depth to millions of people going online to find the infection rates for their local areas; the value of accurate healthcare data has become substantial.

But, according to research published in the British Medical Journal, not all groups are fully represented in official government data. The report from the healthcare think tank the Nuffield Trust uncovered that NHS records regularly fail to accurately identify the ethnicity of patients, leading to an incomplete picture of the health of people from ethnic minority groups.

According to Mala Rao, director of the Ethnicity and Health Unit at Imperial College London’s Department of Primary Care and Public Health, the accuracy of ethnicity recording should be improved for all people across the NHS.

“I would like to see NHS England bring together all the stakeholders in this agenda—including its partners such as NHS Digital, Health Education England, CQC, academia, and importantly, appropriate public representation—to develop and implement a strategy with agreed goals, targets, and timetable,” Rao told The BMJ.

When the ethnicity data from hospital, accident and emergency and community services were analysed it found that in 2019 to 20, 13% of inpatients and 17% of outpatients did not have a known ethnicity recorded. In addition, the report found that those in ethnic minority groups were more likely than others to have been assigned a different code on different occasions, which indicates errors in the collection of ethnicity data.

Significant problems can arise from poor quality data, especially when researchers attempt to identify patterns in the pandemic related to illness risks and other ethnicity related patterns.

The deputy director of research at the Nuffield Trust, Sarah Scobie, also told The BMJ: “It is unacceptable that we have obvious gaps and distortions in the record of which ethnic groups patients belong to.”

“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,” she added.

Written by Wed 9 Mar 2022

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AI Big Data pandemic public health
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