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Wed 21 Jun 2023

The hunt for ethnicity data in cancer care

Equality in access to healthcare is something we are passionate about at Tenovus Cancer Care. So last year, when Cancer Research UK data revealed that, in England, ethnicity can impact on many different stages of a person’s cancer journey, I was immediately interested to understand the situation in Wales.

The data found that for most cancer types, incidence was lower amongst non-white minority ethnic groups. However, another paper highlighted that being from a minority ethnic group would make it more likely that diagnosis of a number of cancer types happened at a later stage. It was concluded this was due to a wide range of reasons, including lower screening uptake and symptom awareness.

I decided to investigate if ethnicity has an impact on the stage of diagnosis in Wales. Because if it does, we could start planning interventions to try to close that gap. As a smaller organisation, we are entirely reliant on publicly available data, so I looked at my usual sources.

Interestingly, there was no sign of ethnicity data. After asking around, no one seemed to know where I might be able to find it. I spoke to the Welsh Government Equality Evidence Unit, and was directed to a number of other organisations. The answers were all the same - this data is collected and reported at health board level. I decided to make some Freedom of Information requests to the health boards to find out how ethnicity data was being captured for cancer patients.

The papers from Cancer Research UK indicate that in 2017 ethnicity data was captured for about 92% of cancer patients in England. Given how hard it was to even find the data, I wasn’t expecting Wales to be doing as well as England in terms of data capture. However, I was still shocked by the replies from the Freedom of Information requests, with one health board collecting ethnicity data for as little as 15% of its cancer patients. The highest was at 55%, but this is still way off what England was collecting more than 10 years ago.

Interestingly, the Suspected Cancer Pathway document indicates ethnicity data should be collected. So, why isn’t it?

Research shows there are several reasons why we may fail to collect ethnicity data. It may be staff aren’t trained to recognise why it is so important to collect, or it could be that patients are concerned their data could be used inappropriately.

At this point I spoke to our Policy and Public Affairs Manager, who advised that although this data was mandated, for some reason its collection wasn’t being enforced and it seems that health boards hadn’t been given targets by Welsh Government. If those targets aren’t in place, health boards are unlikely to prioritise compliance. Additionally, while the Health Boards themselves are responsible for collecting this data, there may be scope for the data to be collected through the new Cancer Informatics System which is being rolled out in Wales. At present this new system does not collect ethnicity data because of concerns about duplicating data already being collected by the Health Board.

We decided to outline our concerns to the Minister for Health, Eluned Morgan MS, to help prioritise ethnicity data in healthcare. The Minister shares our view that this data should be collected and is currently looking into the situation.

In the meantime, we are doing all we can to make people more aware of this issue. If we were to start capturing ethnicity data tomorrow it still means there will be a wait before we truly understand the situation in Wales, but we are hopeful that we will soon be in a position to identify what needs to be done to close the gaps in cancer care.


Dr Maddy Young

Tenovus Cancer Care Insight and Engagement Lead/Arweinydd Mewnwelediad ac Ymgysylltu

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