WE ARE A MAGAZINE ABOUT LAW AND JUSTICE | AND THE DIFFERENCE BETWEEN THE TWO
February 21 2024
WE ARE A MAGAZINE ABOUT LAW AND JUSTICE | AND THE DIFFERENCE BETWEEN THE TWO
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Ethnic health data gaps cause concern for minority cancer patients

Ethnic health data gaps cause concern for minority cancer patients

Pic: Patrick Maguire
Red Cell: Patrick Maguire from Proof magazine, issue 4

A worrying ethnicity data gap in the Welsh health system has been noted to cause trouble for cancer patients of minority backgrounds. Most cancer statistics do not include minority ethnic groups, like the black and Asian communities.

This has created a reliance on assumptions about how patients will respond to treatments, despite clear evidence that certain cancers impact different racial groups differently.

The Welsh Government has been working to improve data collection and health research diversity. Research from Tenovus, a cancer charity, demonstrates that few patient records contain data on ethnicity. Judi Rhys, a member of Tenovus, noted that patient ethnicity data is not gathered routinely, despite a mandate to do so. Rhys stated that ‘we know that health boards are not collecting that data routinely – the figures vary between the health boards from 15% to 55%.’

This data gap was highlighted by the story of cancer patient Spike Elliot. Elliot was a 49-year-old father of two when he went to seek out medical assistance for a shoulder ache. After five days of tests and screenings, he was diagnosed with stage four lung cancer.

The first plan was to operate and remove the tumor, but Dr. Jason Lester recognised that Elliot may have a rare genetic mutation called ALK. This meant that medication would be more helpful than surgery for treating Elliot’s cancer. Eventually, the ALK gene mutation was identified, and Elliot was placed on a drug named Alectinib. After several months his brain tumor had halved, and cancer had cleared from his other organs.

ALK is rare in lung cancer with a low incidence rate among white people and a higher frequency among Asian people. In black patients, there is very little data published on it.

A contributing factor to this disparity is the IT system used for cancer informatics, which does not include the option to detail a patient’s ethnicity. Although discrimination is often not intentional, it is the result of this racialised system for data gathering. Cardiff University Professor Emmanuel Ogbonna states that ‘because, in their everyday lives, they support a system that is already racialised, the only outcome you can get from that system is a racialised outcome.’

Dr. Lester, a mixed-race man himself, calls for better ethnic data on cancer in response to the experience of Spike Elliot. He notes that most cancer treatment studies involve only white or Asian patients, with black people making up a very small proportion of clinical trials. Lack of data has led to cancer treatment becoming guesswork for minority patients, as doctors must second-guess the type of cancer and suitable treatments.

The Welsh government is currently working to address this data collection issue through its race disparity evidence unit. This will be done by setting clear expectations for the role of ethnicity in health studies. The unit seeks to improve data at the point of collection, creating a readily available supply of data regarding ethnicity to influence and expand the treatments offered.