Consent to Data Linkage in LSAC

IntroductionLinking the existing longitudinal data assets with administrative datasets provide the opportunity to transform longitudinal data into valuable assets to inform research and policy development. Objectives and ApproachThis paper will focus on Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC) data linkage landscape and consents which are invaluable for the development of evidence-based health-social-economic policies. ResultsLSAC is Australia’s first nationally-representative longitudinal study of child development. Since 2004, two cohorts of 5,000 children and their parents have been interviewed every two years (B (baby) cohort and K (kindergarten) cohort). Over the years, multiple data linkage has been undertaken based on either parental consent or study child consent. In 2004 parents were asked to consent on behalf of the study child to link Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS)/Repatriation Pharmaceutical Benefits Scheme (RPBS) and Australian Childhood Immunisation Register (ACIR) administrative data to LSAC. The consent rate was 93% was for MBS, PBS and ACIR. Nearly 90% of B cohort parents provided consent to link Australian Early Development Census (AEDC)/National Assessment Program – Literacy and Numeracy (NAPLAN) and 95.4% of K cohort parents provided consent to link NAPLAN.Then ten years later, children in the K cohort were asked to consent to MBS/PBS and income-support administrative data. The rates were 86.6% for MBS, 85.4% for PBS and 81.2% for income-support administrative data. Parental consent to link their MBS, PBS and income-support administrative data was also sought and these rates varied between 60% to 88%. Conclusion/ImplicationsThe discussion will focus on differences in consent rates by time of consent, consenting individual and type of administrative data to be linked. Challenges and considerations that researches should be aware of when designing the linkage consent methodology will also be discussed.