Understanding Patient Data

We conducted a mixed methods study to investigate the reasons behind gaps in patient data for Black and South Asian communities within NHS datasets. Our research involved interviewing xxxx healthcare workers across the UK, representing various levels of seniority, and surveying xxxx individuals from the general public to understand their perspectives on sharing patient data. Our study revealed significant insights into the underlying factors contributing to these data gaps. For detailed findings, please refer to our What it Means to be Seen” report.

The insights gleaned from this study, combined with earlier work commissioned by the Wellcome, were instrumental in informing the codesign of three resources. These resources were developed with the aim of addressing the identified challenges and improving data quality within the healthcare system. The recommendations stemming from our research have been actively utilised to guide improvements within the healthcare system and to support community organisations advocating for better data representation and quality assurance.