Opportunities and challenges when using record linkage of routinely collected electronic health care data to evaluate outcomes of systemic anti-cancer treatment in clinical practice

Abstract

The efficacy and safety of cancer medicines as reported from randomised clinical trials do not always translate into similar benefits in routine clinical practice; hence, post-marketing studies are a useful addition to the evidence base. With recent advances in digital infrastructure and the advent of electronically available health records, linkage of routinely collected data has emerged as a promising evaluation method for these studies. This paper discusses the opportunities and challenges when applying an electronic record linkage methodology with respect to systemic anti-cancer therapy by showcasing exemplar studies conducted over a three-year period in Scotland, and highlights some of the potential pitfalls spanning the entire breadth and depth of the research process. Our experiences as an interdisciplinary team indicate that there is scope to conduct large cohort studies to generate results from routine clinical practice within a reasonable time frame; however, close collaboration between researchers, data controllers and clinicians is required in order to obtain valid and meaningful results.

Data Resource Profile: The Hospital Electronic Prescribing and Medicines Administration (HEPMA) National Data Collection in Scotland

“…These administrative datasets are frequently used for quality assurance (e.g., auditing), benchmarking (national statistics), and research. Population coverage and content of specific datasets, available time frames, and data quality – as well as possibilities for linkages – have been described in detail elsewhere [ 7 , 18 , 20 , 21 ].…”