Managing Privacy and Data Sharing Through the Use of Health Care Information Fiduciaries.
Demuro, Paul R;Petersen, Carolyn;
Studies in health technology and informatics2019Vol. 265pp. 157-162
261
demuro2019managingstudies
Abstract
Policy and regulation seldom keep up with advances in technology. Although data de-identification is seen as a key to protecting one's data, re-identification is often possible. Whether one's data is to be used for care, research, or commercial purposes, individuals are concerned about the use of their information. The authors propose the concept of an information fiduciary for holders of data, describe how it might be applied in a health care context, and outline considerations to determine whether a holder of health care-related information should be regarded as an information fiduciary.