Linking survey data with administrative health information: characteristics associated with consent from a neonatal intensive care unit follow-up study. Can J Public Health 2005;96:151–54

Background: Health services and population health research often depends on the ready availability of administrative health data. However, the linkage of survey-based data to administrative data for health research purposes has raised concerns about privacy. Our aim was to compare consent rates to data linkage in two samples of caregivers and describe characteristics associated with consenters. Methods: Subjects included caregivers of children admitted at birth to neonatal intensive care units (NICU) in British Columbia and caregivers of a sample of healthy children. Caregivers were asked to sign a consent form enabling researchers to link the survey information with theirs and their child’s provincially collected health records. Bivariate analysis identified sample characteristics associated with consent. These were entered into logistic regression models. Results: The sample included 1,140 of 2,221 NICU children and 393 of 718 healthy children. The overall response rate was 55 % and the response rate for located families was 67.1%. Consent to data linkage with the child data was given by 71.6 % of respondents an