title: The collection and utilisation of patient ethnicity data in general practices and hospitals in the United Kingdom: a qualitative case study.
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.
  
  
  OBJECTIVE
  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.
authors.affiliation: eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK. zoe.morrison@ed.ac.uk.
authors.forename: Zoe
authors.initials: Z
authors.lastname: Morrison
authors.affiliation: eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK.
authors.forename: Bernard
authors.initials: B
authors.lastname: Fernando
authors.affiliation: Centre for Health Informatics and Multiprofessional Education, University College London, London, UK.
authors.forename: Dipak
authors.initials: D
authors.lastname: Kalra
authors.affiliation: The School of Health in Social Science, University of Edinburgh, Edinburgh EH8 9DX, UK.
authors.forename: Kathrin
authors.initials: K
authors.lastname: Cresswell
authors.affiliation: eHealth Research Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9DX, UK.
authors.forename: Ann
authors.initials: A
authors.lastname: Robertson
authors.affiliation: 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.
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh
mesh_terms: D003625:Data Collection / Q000379:methods* / Q000592:standards*; D005006:Ethnicity / Q000706:statistics & numerical data*; D005260:Female; D058006:General Practice / Q000458:organization & administration*; D006302:Health Services Research; D006739:Hospital Administration; D006801:Humans; D016247:Information Storage and Retrieval; D007407:Interviews as Topic; D008297:Male; D036301:Qualitative Research; D012959:Socioeconomic Factors; D006113:United Kingdom