The Role of Big Data in the Development and Evaluation of US Dialysis Care

Abstract

Rapid growth in electronic communications and digitalization, combined with advances in data management, analysis, and storage, have led to an era of "Big Data." The Social Security Amendments of 1972 turned end-stage renal disease (ESRD) care into a single-payer system for most patients requiring dialysis in the United States. As a result, there are few areas of medicine that have been as influenced by Big Data as dialysis care, for which Medicare's large administrative data sets have had a central role in the evaluation and development of public policy for several decades. In the 1970/1980s, Medicare data helped identify concerning trends in costs, access to dialysis care, and quality of care delivered. As the research community and policymakers made Medicare's administrative data increasingly accessible for investigation, analyses of Medicare claims have had a large role in facilitating policy synthesis and refinement. Efforts to address the skyrocketing cost of injectable drugs in the 1990s and 2000s exemplify this expanded role of Big Data. Although there are opportunities for large government and nongovernmental administrative data sets to continue serving a critical role in the evaluation and development of ESRD policies, it is important to understand challenges and limitations associated with their use.