Realising health data linkage from a researcher’s perspective: following up the 6-Day Sample of the Scottish Mental Survey 1947

Abstract

Health and wellbeing in old age are influenced by genetic, environmental and social factors throughout the life course. At present, few longitudinal studies offer information from childhood through to old age. Data linkage between multiple sources of health data enhances the value of existing longitudinal data. Regulations governing access to personal data for health research exist to protect the privacy and confidentiality of data on behalf of the individual. This paper outlines the process of obtaining permission for data linkage from a researchers’ perspective, using a case study which offers an unusual opportunity to understand life course influences such as socio-economic status, childhood deprivation and measured intelligence on health and wellbeing in old age in an entire year-of-birth population. The Scottish Mental Survey 1947 (SMS1947, n = 70,805) has childhood intelligence data from individuals born in 1936 and attending schools in Scotland in June 1947. Representative sub-groups of the SMS1947 provided additional sociological information. The 6-Day Sample (n = 1,208), born on 6 days of 1936, were followed up for 16 years to age 27. Their younger siblings also took an intelligence test and were followed up for several years. Our team’s planned research on the SMS1947 falls into two distinct parts. The first is a revival of the 6-Day Sample study involving tracing Sample members and inviting survivors to a follow-up study. The second part aims to carry out linkage between existing data on the SMS1947, its sub-groups, and the younger siblings, and morbidity and mortality data from central databases in Scotland and in England and Wales. We conclude by offering some recommendations for simplifying the process of obtaining permission to access linked health data, and place these into the context of the shifting landscape of data linkage in the UK and beyond.