Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population

BMC Health Serv Res. 2012 Mar 5:12:52. doi: 10.1186/1472-6963-12-52.

Abstract

Background: The British Household Panel Survey (BHPS) is the first long-running UK longitudinal survey with a non-medical focus and a sample covering the whole age range to have asked for permission to link to a range of administrative health records. This study determines whether informed consent led to selection bias and reflects on the value of the BHPS linked with health records for epidemiological research.

Methods: Multivariate logistical regression is used, with whether the respondent gave consent to data linkage or not as the dependent variable. Independent variables were entered as four blocks; (i) a set of standard demographics likely to be found in most health registration data, (ii) a broader set of socio-economic characteristics, (iii) a set of indicators of health conditions and (iv) information about the use of health services.

Results: Participants aged 16-24, males and those living in England were more likely to consent. Consent is not biased with respect to socio-economic characteristics or health. Recent users of GP services are underrepresented among consenters.

Conclusions: Whilst data could only be linked for a minority of BHPS participants, the BHPS offers a great range of information on people's life histories, their attitudes and behaviours making it an invaluable source for epidemiological research.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Aged
  • Bias
  • Female
  • Humans
  • Informed Consent / statistics & numerical data*
  • Logistic Models
  • Longitudinal Studies
  • Male
  • Medical Record Linkage / standards*
  • Middle Aged
  • Sex Factors
  • Socioeconomic Factors
  • United Kingdom
  • Young Adult