By Elliott Engers

Our mission is to support healthcare professionals to provide consistent, high quality care for their patients. We have a laser-like focus on giving time back to frontline staff, and we believe this directly translates to better outcomes and experiences for both patients and staff.

The collection and interpretation of data stored and processed by Infinity is a key way that we help give time back to staff. Data gives insight into who is doing what and when, where resources could be better organised to meet demand, and how health and care services could be made safer and more efficient.

What should we do when we discover that data being collected on our platform may be contributing to systemic racism in the NHS?

This is exactly the issue we’ve recently been grappling with. We have a responsibility, as all other digital health companies do, to ensure the technologies we create don’t lead to the discrimination of any member of our society, and I want to highlight an issue we have become aware of in recent months.

NHS staff self-testing for COVID-19

In November, the NHS began rolling out rapid COVID-19 testing for all patient-facing staff in hospitals using Lateral Flow Devices. Staff were provided test kits and asked to regularly submit their results from home, before attending work. If a staff member received a positive test result, they were instructed to isolate and confirm the result with a laboratory (PCR) test.

Infinity is currently used by over 15% of frontline staff (~40,000) to submit their Lateral Flow test results.

Mandatory ethnicity categories.jpg — Public Health England (PHE) specify a minimum data set for all submitted test results, including name, date of birth, home address, sex at birth, amongst others. Crucially, the data requires staff to submit their ethnicity, chosen from a drop-down list of standard options.

An insult to frontline staff

Imagine you're a nurse, you are mixed race and born in the UK. You're working in a hospital during a global pandemic, fully aware that you are exposing yourself to increased risk. The UK government now asks you to test at home and when you submit your results, they require you to select your ethnicity from this list:

White - British
White - Irish
White - Any other White background
Mixed - White and Black Caribbean

Mixed - White and Black African
Mixed - White and Asian
Mixed - Any other mixed background
Asian or Asian British - Indian
Asian or Asian British - Pakistani
Asian or Asian British - Bangladeshi
Asian or Asian British - Any other Asian background
Black or Black British - Caribbean
Black or Black British - African
Black or Black British - Any other Black background
Other Ethnic Groups - Chinese
Other Ethnic Groups - Any other ethnic group
Not stated

With even the most cursory of glances, it is clear that this list is far from adequate, often conflating nationality with race and providing somewhat vague and arbitrary categories to choose from. The list includes options for “White - British”, “Asian or Asian British”, '“Black or Black British”, but not “Mixed or Mixed British”.

When we discuss this internally, we have been generously referring to this as a micro-aggression to the people standing on the frontline during the pandemic. In discussing the issue with staff, many express how frustrating and disheartening this is and it serves as yet another example of how our society fails to adequately consider people from different backgrounds or their needs.

It makes us very uncomfortable that our software contributes to staff feeling this way. As a digital health company driving digital transformation in the health service, it is imperative that we don't continue, exacerbate or introduce unfair bias.

Using poor ethnicity data has far-reaching consequences

“This ethnicity list is creating data sets which present a misleading picture of health needs and inequalities”

The ethnicity list we are required to use is the list of “standard” ethnicity groups used across our health and care system, and whenever the government carries out social surveys of any kind. It’s the list taken from the NHS Data Dictionary Ethnic Category Code 2001, which is in turn defined in the 2001 census as the national mandatory standard for the collection and analysis of ethnicity data. It has been in use for over 20 years.

Coding of ethnicities at an accurate and granular level is so important because of differences in health outcomes, experiences of health services, health risk factors, and wider determinants of health for people from different ethnic groups.

NHS leaders use this data to make decisions that affect access to healthcare, through community engagement programmes, disease screening, and the development and testing of medical devices.

In June 2021, research showed that among patients who had several contacts with the NHS, those from ethnic minority groups were more likely to have a different “ethnicity code” assigned on different occasions they visited. This further reinforces our view that this ethnicity list is inadequate, and is creating data sets which present a misleading picture of health needs and inequalities.

In the case of staff self-testing for COVID-19, variation in infection rates or engagement between different ethnic groups could be harder (if not impossible) to discern, if the granularity of the data is limited to the current mandatory reporting categories.

As Sarah Scobie, Deputy Director of Research at the Nuffield Trust, said, “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.”

This is systemic racism

“As far as well can tell, there is no plan to review the ethnicity categories and no way to petition for the list to be updated… We can and we must do better”

We don't believe the list of ethnicity categories has remained outdated for over 20 years because any individual or group is being overtly racist. Instead, we believe this is an example of systemic racism, which is often more widespread, less visible and less likely to change - something we are now discovering first-hand. Systemic racism in healthcare causes harm and in some cases death, for NHS staff and patients.

We have written to Public Health England to explain the problem and request the list be updated as a matter of priority, but have so far received no response; as far as we can tell, there is no plan to review the ethnicity categories and no way to petition for the list to be updated.

Systemic racism is alive and well in our society, and unless those at the top choose to do something about it, and soon, more people will suffer and more lives will be unnecessarily lost.

We must invest in regularly reviewing data standards to ensure we are progressing towards a fairer society for everyone. We can and we must do better.