Zoe Morrison1, Bernard Fernando2, Dipak Kalra3, Kathrin Cresswell4, Ann Robertson2, Aziz Sheikh5. 1. eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK. zoe.morrison@ed.ac.uk. 2. eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK. 3. Centre for Health Informatics and Multiprofessional Education, University College London, London, UK. 4. The School of Health in Social Science, University of Edinburgh, Edinburgh EH8 9DX, UK. 5. eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK; Division of General internal Medicine and Primary Care, Brigham and Women's Hospital/Harvard Medical School, 3rd Floor, 1620 Tremont Street, Boston, MA 02120-1613, USA.
Abstract
BACKGROUND: Although the collection of patient ethnicity data is a requirement of publicly funded healthcare providers in the UK, recording of ethnicity is sub-optimal for reasons that remain poorly understood. AIMS AND OBJECTIVES: We sought to understand enablers and barriers to the collection and utilisation of ethnicity data within electronic health records, how these practices have developed and what benefit this information provides to different stakeholder groups. METHODS: We undertook an in-depth, qualitative case study drawing on interviews and documents obtained from participants working as academics, managers and administrators within the UK. RESULTS: Information regarding patient ethnicity was collected and coded as administrative patient data, and/or in narrative form within clinical records. We identified disparities in the classification of ethnicity, approaches to coding and levels of completeness due to differing local, regional and national policies and processes. Most participants could not identify any clinical value of ethnicity information and many did not know if and when data were shared between services or used to support quality of care and research. CONCLUSIONS: Findings highlighted substantial variations in data classification, and practical challenges in data collection and usage that undermine the integrity of data collected. Future work needs to focus on explaining the uses of these data to frontline clinicians, identifying resources that can support busy professionals to collect standardised data and then, once collected, maximising the utility of these data.
BACKGROUND: Although the collection of patient ethnicity data is a requirement of publicly funded healthcare providers in the UK, recording of ethnicity is sub-optimal for reasons that remain poorly understood. AIMS AND OBJECTIVES: We sought to understand enablers and barriers to the collection and utilisation of ethnicity data within electronic health records, how these practices have developed and what benefit this information provides to different stakeholder groups. METHODS: We undertook an in-depth, qualitative case study drawing on interviews and documents obtained from participants working as academics, managers and administrators within the UK. RESULTS: Information regarding patient ethnicity was collected and coded as administrative patient data, and/or in narrative form within clinical records. We identified disparities in the classification of ethnicity, approaches to coding and levels of completeness due to differing local, regional and national policies and processes. Most participants could not identify any clinical value of ethnicity information and many did not know if and when data were shared between services or used to support quality of care and research. CONCLUSIONS: Findings highlighted substantial variations in data classification, and practical challenges in data collection and usage that undermine the integrity of data collected. Future work needs to focus on explaining the uses of these data to frontline clinicians, identifying resources that can support busy professionals to collect standardised data and then, once collected, maximising the utility of these data.