Tenovus Cancer Care today calls for the ethnicity of every cancer patient in Wales to be captured as it’s revealed this can be as little as 15% by some health boards.
Welsh Government requires NHS Wales to collect the ethnicity data of cancer patients under their care. Having this information can help inform treatment and outcomes as well as addressing health inequalities.
However, Freedom of Information requests made by Tenovus Cancer Care found just 15% - 55% of cancer patients’ ethnicity was captured by health boards in 2022. In comparison, ethnicity data is collected for almost 95% of cancer patients in England.
As part of the Patient Administration Systems (PAS), the responsibility to collect ethnicity data sits with health boards and should be part of general data collection, such as patient address and contact details, which should be reviewed every time a patient presents. Tenovus Cancer Care has been told that while capturing this data is aspirational, it is not a present priority.
The new cancer informatics solution (CIS), the IT system that captures the diagnosis, treatment, and follow-up arrangements of cancer patients in Wales, has been rolled out over the past year. But according to colleagues within the NHS, the new CIS system, in its current form, does not capture ethnicity data.
Find out more about The hunt for ethnicity data in cancer care.
Consultants diagnosed Michael Elliott, 53, from Cardiff, with stage 4 lung cancer, which had spread to his brain in 2018. He says his ethnicity became a crucial factor in his treatment options after they told him he had six months to a year to live.
Remarkably, his lung cancer is now in remission after the intervention from a consultant who thought his ethnicity, his genetic make-up, was important to explore with further testing. That intervention was a turning point for Spike who was offered a new, targeted drug instead of life-extending surgery and Chemotherapy.
The dad-of-two, known as Spike, said: “I identify as black, and I have Jamaican heritage. After the initial shock of my cancer diagnosis, I realised there was nobody to compare myself too, in cancer statistics, or in anything visible I could read. It was a totally isolating experience - not only did I feel alone but as though I didn’t matter.
“Capturing the ethnicity of every cancer patient should be a priority by health boards, and they should be called out if they don’t. My story shows how important ethnicity data collection can be in a patient’s cancer journey, to the point of even saving their life.”