Data collected to inform the NHS and government response to Covid-19 will not include ethnicity or race, according to government documents.
The data protection impact assessment (DPIA) on the NHS Covid-19 data store revealed that health data on the virus would not be broken down by ethnicity, despite recent statistics indicating people from black and minority ethnic backgrounds are disproportionately affected by the virus.
The store, run by Palantir, was designed as a central data platform to better inform the national response to the pandemic. It includes data such as 111 online and call centre data from NHS Digital, as well as Covid-19 test result data from Public Health England.
The DPIA details 35 data subsets that will feed into the data store, but a closer look at the “special categories” of personal data collected shows “data concerning health” would be the only category processed.
Ethnicity and race, genetic data and biometric data are omitted from the list.
Professor Eerka Boiten, professor in cyber security at De Montfort University in Leicester, said the absence of data on ethnicity was “problematic”.
“It’s just downright bizarre to me,” he told Digital Health News.
“How can you plan a response to that particular dimension of the pandemic, namely that it hits some people harder than others, without being able to decide which people fall into that category and who doesn’t.
“They’re going to have to process race data in order to do something about it. The most cynical interpretation is that they just don’t care and they’re going to have a generic response that doesn’t worry about race and ethnicity at all.”
Prof. Boiten, who’s part of the universitiy’s Cyber Technology Institute, said he believes the governments Ethics Advisory Board, established to oversee the development of the contact-tracing app, should be used to oversee the wider data collection process related to Covid-19.
It comes as Public Health England (PHE) released a report on “Understanding the impact of Covid-19 on BAME group” which called for comprehensive ethnicity data collection and recording to be mandated as part of routine NHS and social care data collection systems.
“Throughout the stakeholder engagement exercise, it was both clearly and consistently expressed that without explicit consideration of ethnicity, racism and structural disadvantage in our responses to COVID-19 and tackling health inequalities there is a risk of partial understanding of the processes producing poor health outcomes and ineffective intervention,” the report found.
PHE was heavily criticised for failing to provide actionable recommendations in its initial report from its rapid review into coronavirus data, which found people of BAME background were twice as likely to die from Covid-19.
The Shuri Network, a support network for BAME women in digital health roles, has previously warned the analysis of BAME data cannot be passed between departments as a “hot potato too difficult to confront”.
Several reports and analyses have found people of BAME backgrounds are disproportionately affected by the virus, including Office of National Statistics figures published on 7 May revealing black people are four times more likely to die from the virus than white people.
The DPIA also revealed data collected by the NHS contact-tracing app could be fed into the data store. It states Pivotal, the company responsible for developing the contact-tracing app, will have access to the data store through an admin account.
It will not have a direct role in the data store but is responsible for elements of the contact-tracing app, suggesting data from the app will at some point feed into the store.
NHSX has confirmed a portion of data collected by the app, which uses Bluetooth technology to trace contacts, will be kept for research purposes.
A trial of the app was launched on the Isle of Wight on 4 May. At the time a wider roll-out date was expected by mid-May, but the date was later pushed back to June.
The government’s wider test and trace system was launched on 28 May, including some 25,000 human contact tracers, without the much-anticipated app.
Last week the first statistics of the test and trace system were released, but during the daily press briefing health secretary Matt Hancock provided no update on the expected roll-out of the contact-tracing app, just saying that the app would be brought in “when it is right to do so”.