Principled Health Information Systems: Ethics Beyond Data Security

Author(s): James C. Thomas, Andreas Reis, and Victoria Fleming

Year: 2019

Abstract:

Low- and middle-income countries are creating and expanding digital data systems to monitor their health trends and guide their health programs. The construction of these systems is often regarded as purely technical, with little consideration given to ethical dimensions. Data security is a notable exception.

To identify a broader range of ethical concerns, we carried out a scoping review of the literature for sets of principles to guide the development and use of digital information systems relevant to population health. The 11 sets we identified named a total of 34 principles, of which data security was one. We organized the principles into four stages of health information system (HIS) development: HIS design, data collection, data storage, and data use. To accommodate these principles, countries must first be aware of them and identify the staff responsible for addressing them in the design of their digital data systems.