Is the linkage of census and health data justified? Views from a public panel of the Scottish Health and Ethnicity Linkage study

Abstract

Background Using routine health data for research aimed at improving health requires the public's awareness and trust. The Scottish Health and Ethnicity Linkage study explores variations in health between ethnic groups. We aimed to establish a public panel to obtain their views on its methods, findings and dissemination, including use of routine health data without individual opt-in consent. Methods Adult applicants were sought via a range of sources, aiming for a balance of age, gender and ethnicity. Three half-day meetings were held in 2015-16. Discussion covered the study's aims and governance; record linkage methods; data security; main findings, dissemination and publication processes. Results Of 29 applicants, 19 joined the panel. Panellists were from 10 ethnic groups, 11 were females, ages 29-69 years. With some reservations, they enjoyed the meetings. After methods and security were explained, they unanimously accepted the study's use of linked data without individual opt-in consent. They thought explaining such complex methods to the general public was difficult. They recommended more should be done to communicate study findings to the public, practitioners and policy makers. Conclusions The panellists' support for the study methods was reassuring. Their recommendations have led to the implementation of a wider dissemination plan.