THERE was the home health aide distraught at having potentially transmitted the coronavirus to her patients. The essential worker, just barely into his 40s, on a ventilator for six weeks. The beloved father鈥檚 family whose agony was revealed in every phone call recorded in his medical record.
These are the stories of some of the people with covid-19 whose medical records I reviewed as a research volunteer in New York City. Combined with thousands of other people鈥檚 anonymous data, such collections are critical for informing research, clinical care, government policies and funding allocations to tackle the pandemic. Participating in this process, it became clear that the system of healthcare data collection perpetuates systemic racism in medicine in the US and elsewhere.
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It is well established that people of colour in the US are . In the UK, the same is true for people from black, Asian and minority ethnic (BAME) backgrounds. But the way we are trying to understand these patterns is all wrong.
The statistics collected on covid-19 largely focus on biological factors, such as comorbidities: secondary conditions that may affect a disease鈥檚 outcome. With covid-19, obesity has been linked to its severity, for example. Many comorbidities, obesity included, are also found in the West. This has led many to highlight them as the sole explanation for covid-19 health disparities. This is an oversimplistic and harmful conclusion.
While we know that ethnic minority groups in the West have had higher infection rates, we will never fully understand why that is the case without looking at aspects of health that aren鈥檛 down to biology. So-called social determinants, such as food security, housing and cultural practices, are not only important for explaining why health disparities exist, they are also vital for knowing how to address them.
Consider multigenerational households. When people with mild cases of covid-19 are told to isolate in their homes, the risk of spread rises with each extra member in the household. If they have older relatives living with them, the risk of a more severe case of covid-19 increases. In the West, people of colour are .
Early in the pandemic, we didn鈥檛 collect data on this and many other social factors to determine if these households have an increased covid-19 burden. Such data would have helped reduce the disease鈥檚 spread for everyone, not just minority populations. Viruses don鈥檛 care about the colour of your skin.
Published work on covid-19 illustrates the lack of data on social determinants. On pubmed.gov, a database of international biomedical literature, 676 articles mention 鈥渃omorbidities鈥� and 鈥淐OVID-19鈥� compared with just 52 for 鈥渟ocial determinants of health鈥� and 鈥淐OVID-19鈥�.
Why is research on the social determinants of covid-19 so limited? Unfortunately, this is the status quo in clinical research.
From the start of their training, clinicians learn that biological factors are the most important for understanding, preventing and treating disease. Many medical schools in the US and Europe don鈥檛 have a required curriculum on social determinants of health. In schools that do, it is common for the curriculum to be squeezed into a single class. The implication is that social determinants aren鈥檛 a priority in medical care.
By failing to gather data on social determinants early in the pandemic, we lost the opportunity to reduce the spread of covid-19. We must now prioritise the collection of such data to ensure we operate equitable healthcare systems where minority communities aren鈥檛 left behind.
