title: Large panel-survey data demonstrated country-level and ethnic minority variation in consent for health record linkage.
abstract: OBJECTIVE
  To investigate individual, household, and country variation in consent to health record linkage.
  
  
  METHODS
  Data from 50,994 individuals aged 16-74 years recruited to wave 1 of a large UK general purpose household survey (January 2009-December 2010) were analyzed using multilevel logistic regression models.
  
  
  RESULTS
  Overall, 70.7% of respondents consented to record linkage. Younger age, marriage, tenure, car ownership, and education were all significantly associated with consent, although there was little deviation from 70% in subgroups defined by these variables. There were small increases in consent rates in individuals with poor health when defined by self-reported long-term limiting illness [adjusted odds ratio (OR) = 1.11; 95% confidence intervals (CIs): 1.06, 1.16], less so when defined by General Health Questionnaire score (adjusted OR = 1.05; 95% CIs: 1.00, 1.10), but the range in absolute consent rates between categories was generally less than 10%. Larger differences were observed for those of nonwhite ethnicity who were 38% less likely to consent (adjusted OR = 0.62; 95% CIs: 0.59, 0.66). Consent was higher in Scotland than England (adjusted OR = 1.17; 95% CIs: 1.06, 1.29) but lower in Northern Ireland (adjusted OR = 0.56; 95% CIs: 0.50, 0.63).
  
  
  CONCLUSIONS
  The modest overall level of systematic bias in consent to record linkage provides reassurance for record linkage potential in general purpose household surveys. However, the low consent rates among nonwhite ethnic minority survey respondents will further compound their low survey participation rates. The reason for the country-level variation requires further study.
authors.affiliation: Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom; UKCRC Centre of Excellence for Public Health (NI), Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom.
authors.forename: Sharon Mary
authors.initials: SM
authors.lastname: Cruise
authors.affiliation: Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom; UKCRC Centre of Excellence for Public Health (NI), Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom.
authors.forename: Lynsey
authors.initials: L
authors.lastname: Patterson
authors.affiliation: Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom; UKCRC Centre of Excellence for Public Health (NI), Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom.
authors.forename: Chris R
authors.initials: CR
authors.lastname: Cardwell
authors.affiliation: Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom; UKCRC Centre of Excellence for Public Health (NI), Centre for Public Health, Institute of Clinical Sciences Block B, Queen's University Belfast, Royal Victoria Hospital, Grosvenor Road, Belfast BT12 6BJ, Northern Ireland, United Kingdom. Electronic address: d.oreilly@qub.ac.uk.
authors.forename: Dermot
authors.initials: D
authors.lastname: O'Reilly
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D015982:Bias; D005006:Ethnicity / Q000706:statistics & numerical data*; D005191:Family Characteristics / Q000208:ethnology*; D005260:Female; D006306:Health Surveys; D006801:Humans; D007258:Informed Consent / Q000706:statistics & numerical data*; D016015:Logistic Models; D008137:Longitudinal Studies; D008297:Male; D008498:Medical Record Linkage; D016347:Medical Records Systems, Computerized; D008875:Middle Aged; D008913:Minority Groups / Q000706:statistics & numerical data*; D015999:Multivariate Analysis; D009660:Northern Ireland / Q000453:epidemiology; D016017:Odds Ratio; D012606:Scotland / Q000453:epidemiology; D015983:Selection Bias; D012959:Socioeconomic Factors; D014852:Wales / Q000453:epidemiology; D055815:Young Adult
keywords: Country-level variation; Ethnic minority variation; Health record linkage; Informed consent; Selection bias; Survey