Ethics of Collecting and Using Healthcare Data

Author: Derick Wade

Publisher: National Library of Medicine

Publication Year: 2007

Summary: The following article discusses how ethical review committees are helpful, but the ultimate responsibility of ethical data use in healthcare falls to those organizations acquiring and examining the data. In many cases involving healthcare research, explicit consent is not required from the data subject. Because patients lose control over their data, they should be guaranteed secure stewardship of their data, and careful analysis of it. Proper data stewardship encompasses more than just healthcare research, however. There is a pervasive belief that ethics in healthcare apply solely to research, and while ethics are important in research settings, the usage of data in the administrative side of healthcare is not subject to enough scrutiny. Across all subsets of the healthcare industry, analysts must ask themselves a series of key questions to determine if their analysis of patient data is justified: 1). Will the data analysis method answer the question being asked; 2). Do participants have agency; are they informed of the study, and can they opt out of participation; 3). Are there risks to the participant? If so, what are they; and 4). What are potential benefits, if any, to the participant and society? It helps if institutional review boards (IRBs) and ethics committees ask and answer these questions, but ultimately, Wade argues that it is the responsibility of all parties involved in data collection and analysis to be mindful of these considerations.