In the UK, African-Caribbean men are up to 3 times more likely to develop prostate cancer than white men of the same age. Reference
South Asian and Black people are 2 to 4 times more likely to develop Type 2 diabetes than white people. Reference
Patients from the Pakistani ethnic group are the least satisfied with hospital care of all ethnic groups. Reference
We will begin by focussing on:
Completeness, validity and consistency of ethnicity recording within NHS health datasets in England
Having complete, valid, and consistent ethnicity data is vital for planning services, conducting research, and monitoring inequality trends across health and care pathways. Without knowing the ethnicity of our patients and service users, we can’t hope to eliminate disparities in access, experiences and outcomes.
We already know there are significant data quality issues with ethnicity coding in health records and systematic biases in the data. For example, data recently extracted for the purposes of pandemic planning show that among Clinical Commissioning Groups, an average of 89.5% of patients had a known ethnic category, with some reporting as low as 72.6%. This means that the ‘Unknown Ethnicity’ category included 6,317,905 patients. This one example represents a major blind spot in work to reduce race inequalities in our system.
The NHS Race and Health Observatory will be working to examine the completeness, validity, and consistency of ethnicity coding within NHS health datasets in England, including through an early collaboration with The Nuffield Trust. Our work will help to establish the extent and nature of data quality issues and our findings will provide the basis for action to improve data quality and to inform more robust analysis and reporting of ethnic inequalities.
Performance and data measurement dashboards on ethnic health inequalities
Even where we do have robust research and data on health inequality, it is not always readily available or easily comparable. The datasets are not always consistent, timely or granular enough to enable clinicians, patients, and managers to fully understand what is happening in their geographical area or clinical speciality. There is an urgent need for an accessible, user-focused, dashboard on ethnic health inequality.
The NHS Race and Health Observatory is working with various stakeholders and partners to develop a race inequality dashboard. The dashboard will be interactive, updated regularly and automated. It will be developed with clinicians, academics, and patients to make sure that we include the indicators that are really needed. We will draw learning and insights from other sectors to ensure that the dashboard is able to help users to identify areas with the biggest inequalities as well as highlighting good practice.
We firmly believe that data should be shared wherever it can make a difference. Our vision is that beyond our own race inequality dashboard, we will also support other organisations across the health and care sector to embed ethnicity information in their own dashboards and analytics. As dashboard are becoming more widely used in health and social care, race equality should be an essential lens through which we measure our services, as opposed to an afterthought.
The NHS Race and Health Observatory has brought together a working group of experts in this area to devise and steer robust research and targeted intervention in the sector. The below people have agreed to be on the group thus far.
- Pollyanna Jones, Head of Delivery and Collaboration, NHS England and NHS Improvement (Co-chair)
- Dr Harpreet Sood, GP and Non-executive directors, Health Education England (Co-chair)
- Melissa Andison, Associate Director of Digital Health Transformation and Associate Chief Clinical Information Officer, Surrey and Borders Partnership NHS Foundation Trust
- Dr David Ashby, Director of Improvement Products & Services, NHS England and NHS Improvement
- Dr Nav Chana, National PCH Clinical Director, National Association of Primary Care (NAPC).
- Dr Shera Chok, Deputy Chief Medical Officer, NHS Digital (Co-founder and Chair, The Shuri Network)
- Yvonne Mhlanga, Head of Mental Health Commissioning, Berkshire West CCG
- Eddie Olla, Regional Director for Digital Transformation, NHS England – Midlands
- Dr Gurprit Singh Pannu, Chief Clinical Information Officer, Sussex Partnership NHS Foundation Trust,
- David Rose, Director Donor Experience, NHS Blood and Transplant
- Shella Sandoval, Nursing Information Officer, Royal Free London NHS Foundation Trust
- Sarah Scobie, Deputy Director of Research, Nuffield Trust
- Surriya Walters, Digital Inclusion Outreach Manager, Good Things Foundation