Academic journal article Canadian Journal of Public Health

Linking Survey Data with Administrative Health Information: Characteristics Associated with Consent from a Neonatal Intensive Care Unit Follow-Up Study

Academic journal article Canadian Journal of Public Health

Linking Survey Data with Administrative Health Information: Characteristics Associated with Consent from a Neonatal Intensive Care Unit Follow-Up Study

Article excerpt

ABSTRACT

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 and with caregiver data by 67% of respondents. Families of healthy children were as likely to provide consent as families of NICU children. Higher rates of consent were associated with being a biological parent, not requiring survey reminders, involvement in a parent support group, not working full-time, having less healthy children, multiple births and higher income.

Conclusion: The level of consent achieved suggests that when given a choice, most people are willing to permit researcher access to their personal health information for research purposes. There is scope for educating the public about the nature and importance of research that combines survey and administrative data to address important health questions.

MeSH terms: Privacy; databases; questionnaires; neonatalogy

Significant components of health services and population health research depend on the ready availability of individual-level, longitudinal, linkable, deidentified, administrative health data. Combining administrative data from different sources with information from surveys on health status, demographic and socio-economic characteristics, extensively expands the potential research questions that can be explored and is critical for some forms of research. However, various concerns have been raised about the use of administrative data, and particularly the linkage of survey-based data to administrative data.

Studies that have linked survey data with administrative sources of data for health research purposes, report wide variations in rates of consent.1-5 In order to properly address concerns about data privacy and to formulate appropriate data linkage and access policies, better information is needed about public willingness to have health data linked, and factors affecting consent to data linkage.

The aim of this paper was to compare consent rates to data linkage and describe characteristics associated with consenters using data provided by parents in a population-based sample of children admitted at birth to neonatal intensive care units (NICU) in BC in 1996-1997 and by parents of healthy children. Each child's mother was sent a questionnaire booklet and a two-page consent letter that described the study and its proposed benefits, and asked for permission to access their and their child's provincially collected health records for research purposes. Since there is little information available on characteristics of Canadian men and women who consent to such data linkage, this paper aims to fill an important gap in the literature.

DESIGN/METHODS

All residents in the province of BC participate in a government-administered, tax-financed health insurance plan. All medically necessary services provided by physicians or received in acute care hospitals are benefits under this plan. …

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