Patient Privacy and Clinical Laboratory Data.

Abstract

We currently live in an age of massive personal data creation through activities such as social media, online banking, and healthcare. In healthcare, modern concepts of patient privacy were codified in the 1996 Health Insurance Portability and Accountability Act (HIPAA).6 In 2009, the Health Information Technology for Economic and Clinical Health Act was passed to encourage the adoption of electronic medical records. These laws regulate the privacy of patients' clinical laboratory data. With the generation and collection of large sets of clinical laboratory data, there is a privacy risk. However, this risk is balanced by the use of clinical laboratory data for biomarker discovery and the measurement of clinical outcomes. Recently proposed initiatives such as the Cancer Moonshot and Precision Medicine Initiative (now called “All of Us”) will require the information of millions of patients, including both conventional laboratory and genomic data. In this Q&A, 4 experts explore the current state of data warehouses and health exchanges with a focus on the clinical laboratory. Can you provide an example of a data warehouses or health information exchanges? Toby C. Cornish: Health Data Compass, which went live in 2015, is the enterprise health data warehouse for the University of Colorado (UC) School of Medicine and UCHealth. It is a joint venture by the UC School of Medicine, University of Colorado Medicine, UCHealth, and Children's Hospital Colorado. Laboratory data were added to the data warehouse in July 2016 and initially included over 369 million patient laboratory test orders and results from UCHealth and over 124 million patient laboratory test orders and results from Children's Hospital Colorado. Health Data Compass does not yet contain genomic data, but it is expected to begin housing single-nucleotide polymorphism results from the Colorado Center for Personalized Medicine's Biobank project when that data become available. UCHealth participates …