Using EMRs to improve monitoring of long-term clinical trial outcomes

Using the Secure Anonymized Information Linkage (SAIL) databank at Swansea University Medical School, researchers evaluated the feasibility of using anonymized EMR data to match patients to their records. This study evaluated SAIL in a clinical trial to examine the impact of the use probiotics during pregnancy on asthma and eczema in children.

"SAIL is a world-class, privacy-protecting data linkage system that securely brings together routinely-collected health data,” said SAIL Associate Professor Kerina Jones, the academic lead for data governance and public engagement. “SAIL is part-funded by the Welsh Government and makes person-based health data available for genuine research purposes only where there is a potential for benefit. Because SAIL removes the identities of participants to protect their privacy and holds only anonymized data, researchers carry out their work without knowing the identities of the individuals."

Results showed SAIL was able to improve retention of lower socio-economic groups, produce more reliable results due to lowered risk of bias, provide insight into childhood asthma and boost retention after five years.

"In this study we reported on the feasibility and efficiency of electronic follow up, and compared it with traditional trial follow up,” said Professor Sue Jordan of Swansea University's College of Human and Health Science. “We gained new insights from outcomes electronically recorded three years after the end of the trial and could then identify the differences between trial data and electronic data. The use of electronic databases in clinical trials has been hailed as one of the major benefits of a nationwide electronic health records system. However, few studies have demonstrated this benefit, or formally assessed the relationship between traditional trial data and electronic health records databases."