Access to accurate, timely data is a crucial step in developing a robust response to inequalities in access, experience and outcomes. It is an essential part of understanding how best to provide services that meet the needs of patients and communities that are more likely to experience marginalisation (NHS Providers, 2022d). It is imperative that all trusts are supported with data analysis and interpretation resource, expertise and capabilities to embed a focus on inequalities.
Our survey results show that trusts have made improvements in capturing and using data to harness action on health inequalities from 2021 to 2024. 85% of survey respondents in 2024 reported that they are undertaking 'data analysis to understand particular trends'. Data provide the necessary evidence base for trusts to target their health inequalities interventions. We heard from trusts that have excelled in this area and developed metrics and data dashboards to monitor the impact of their health inequalities work.
“We are moving to having no narrative without data and no data without narrative. With this in mind we have been developing our data, looking at population health.”
"We have data coming out of our ears about which groups of patients are suffering from the results of health inequity, but joining this up to the clinician on the ground, who is already incredibly busy is the issue."
Yet over a third of our survey respondents cite lack of data availability at both the trust and wider system level remains to be a barrier (Figure 2). Feedback from executive leads demonstrates the variation between where trusts are at. There was a general sense that trusts are more data rich than they were three years ago, but there is a way to go to ensure parity between trusts around data availability and use. Responses from trusts ranged from "we have more than enough data on health inequalities" to "data is a significant challenge". On average, most trusts fall within the middle, with many reporting that they are in a "data diving" type phase, which involves exploration of available data and attempts to analyse this by inequality measures.
Insight from executive leads shed light on what the specific issues with data are that trusts are grappling with. Regarding data availability, trusts flagged a lack of data relating to specific population groups that aren't routinely captured in healthcare datasets (particularly those that might fall into the category of 'PLUS' within the Core20PLUS5 framework). Other concerns related to lack of interoperable data systems to provide a comprehensive view of population health – with specific challenges around linking data between primary, secondary and community care. Trusts would welcome improved data infrastructure at the national level to manage data requests and linkage, particularly with support for implementation of electronic patient records. Without good quality, joined up data sets, the aspirations to effectively track, measure, and make evidence-based decisions to reduce health inequalities cannot be realised.
There are specific problems around ethnicity data coding and reporting, which are related in some part to limited staff confidence in asking sensitive questions in busy clinical settings. Feedback highlighted that there are low levels of trust among certain ethnic minority communities, which can make asking for ethnicity data particularly challenging. Most trusts reported concerns around ethnicity data, with high levels of 'not stated' information in patient records. Trusts would welcome insights on good practice for ethnicity coding, such as through staff training and patient awareness campaigns.
"Data - issues with incorporating Index of Multiple Deprivation score data into our wider datasets, meaning inequalities relating to deprivation are difficult to determine. Also issues with the reliability of ethnicity data. Issues around lack of available data in relation to "Plus" groups. These issues could be overcome by having a standard minimum dataset that incorporated "Plus" characteristics available nationally."
"By removing barriers to data-sharing across public services we can enrich intelligence for segmentation and predictive analytics to target preventative actions more effectively."
For trusts that have access to data, separate challenges were raised in relation to lacking the skills and expertise to understand and interpret the data to take meaningful action. Feedback from executive leads highlighted the benefit and value of dedicated data teams or individual data leads to undertake health inequalities data analysis and interpretation. It was noted that existing data teams often do not have capacity or resource to focus on health inequalities due to pressures around existing data reporting requirements. Without dedicated technical skills and resource to deliver the work, trusts are lacking in their data capabilities. A national long-term digital workforce plan is expected to be published by NHSE this year, this should include plans to increase investment in digital, data and technology teams as well as improve digital and data analytic skills across the NHS workforce.
When trusts have access to a comprehensive data set, it does not tell the whole story in relation to health inequalities – highlighting the need to also engage with communities directly. We heard positive examples of trusts engaging directly within communities most likely to experience inequalities and voluntary, community and social enterprise (VCSE) partners to co-design and co-produce services. Our report Co-production and engagement with communities as a solution to reducing health inequalities provides case studies from trusts that have effectively embedded engagement methods within their trust (NHS Providers, 2024b).
"The challenge is resource to disaggregate data - BI resource is limited and challenged with wider mandated functions."