In October 2020, The King’s Fund and UCL Institute of Health Equity submitted a paper to NHS England and NHS Improvement highlighting the limitations in both the coverage and quality of ethnicity recording of people using NHS health and care services in England and suggesting how this can be improved.
The paper argues that good-quality ethnicity data is essential for improving the health and wellbeing of people from ethnic minority communities. The urgent need for accurate data on the ethnicity of people using health and care services has been graphically demonstrated by the Covid-19 pandemic, which has had a disproportionate impact on people from ethnic minority communities.
While welcoming the moves by NHS England and NHS Improvement for more comprehensive ethnicity recording in health records, the paper suggests that this should be accompanied by refreshed guidance to ensure that the process of ethnicity recording is compliant with officially approved protocols. The last guidance on ethnicity coding was issued to the NHS in 2001 (Data Set Change Notice 02/2001 issued by the then NHS Information Authority (now NHS Digital)), and is overdue for a refresh. Otherwise the risk is that the well-intentioned and much-needed call for more comprehensive ethnicity recording in NHS England and NHS Improvement’s guidance on implementing phase three of the response to Covid-19 could result in data that is more complete but where the quality remains poor.
This paper recommends that the Department of Health and Social Care, NHS England and NHS Improvement and NHS Digital take steps to ensure that NHS organisations, staff and GPs are aware of how this information should be collected from patients and recorded. For example, the DSCN 2001 made clear that ethnicity should be self-reported, using the official classifications of ethnicity, and that “not stated” is a legitimate response ie patients should have the option of declining to state their ethnicity (which is different to the “unknown” category, where it wasn’t possible to ask the patient their ethnicity). There should also be an agreed set of rules to account for situations in which the patient has a temporary or permanent lack of capacity.