Data Privacy and Health: How Do We Achieve the Right Balance? [Editor's Choice]
Today nearly 30% of the world’s data are generated by the healthcare industry.1 These data are typically collected for administrative purposes and are often proprietary. Moreover, data on factors that influence health (such as social determinants) increasingly are captured outside of the healthcare system. Although big healthcare data have the potential to improve patient outcomes and ultimately reduce healthcare costs, much of these data are siloed in disparate systems and platforms, making it difficult to access by researchers in both the health economics and outcomes research (HEOR) and health services research fields. In addition, in many jurisdictions, access to personal data is regulated by data privacy legislation. Although confidentiality and antidiscrimination efforts are necessary, there is a direct trade-off between assuring data privacy and allowing access to deidentified data to support health research aimed to improve population health.
To leverage health data for research purposes, interoperability—that is, the ability to access, integrate, and cooperatively use data in a coordinated way both within and across different information systems, devices, and countries—is essential. Nevertheless, regulating the acceptable and appropriate uses of data while protecting patient privacy is a huge challenge. In this themed section in Value in Health, we publish articles that address the complexities of finding the right balance between data privacy and access to data for health services research.
C. Daniel Mullins Michael F. Drummond