Objectives: Billions of dollars have been spent on the goal of making healthcare data available to clinicians and researchers in the hopes of improving healthcare and lowering costs. However, the problems of data governance, distribution, and accessibility remain challenges for the healthcare system to overcome.
Study Design: In this study, we discuss some of the issues around holding, reporting, and distributing data, including the newest "big data" challenge: making the data accessible to researchers and policy makers.
Methods: This article presents a case study in "big healthcare data" involving the Health Care Cost Institute (HCCI). HCCI is a nonprofit, nonpartisan, independent research institute that serves as a voluntary repository of national commercial healthcare claims data.
Results: Governance of large healthcare databases is complicated by the data-holding model and further complicated by issues related to distribution to research teams. For multi-payer healthcare claims databases, the 2 most common models of data holding (mandatory and voluntary) have different data security requirements. Furthermore, data transport and accessibility may require technological investment.
Conclusions: HCCI's efforts offer insights from which other data managers and healthcare leaders may benefit when contemplating a data collaborative.