The Problem: Health Data Preferences are a Public Policy Dilemma

An individual’s choice to share or control the sharing or withholding of personal health information represents one of the most significant public policy challenges connected to electronic health information exchange (Goldstein et al., 2010; Faden et al., 2011; Harper, 2014). Personal identifiable information exchange is complex. The decision to share or withhold personally identifiable information is known as an information or data sharing preference (Olson et al., 2005). Affordable Care Act (ACA) policies strongly encourage the sharing of personally identifiable health care information between consumers and their providers (Berwick, 2009; Daniel et al., 2014; Patel et al., 2012). Consequently, health information sharing is used as a consumer engagement strategy to empower individuals to become active in managing their health and partnering in their health care (Daniel et al., 2014).

At issue is the absence of the consumer voice in policy and power structures that create legal regulation––the underpinnings of data governance needed for C-ME to become mainstream (Moon, 2017). The specific problem is factors that influence health data sharing preferences of consumers are not well understood (Moon, 2017). Limited understanding of predictors and the constructs of information privacy, data security, data sharing preferences, and C-ME exists. Consequently, these constructs are not integrated into an ecosystem sensitive to consumer preference or responsive to consumer choice. A theoretical model is needed to assist with information privacy, data security, health data sharing preferences, and C-ME. Theory helps provide a framework for analysis, is an efficient method for field development, and offers a clear explanation for the pragmatic world (Udo-Akang, 2012; Wacker, 1998). A theoretical model would help to formulate a logical, consistent, and mutually interdependent body of knowledge that supports evaluation and recommendations for change.

Lisa Moon (2017). Dissertation Research. Health Data Sharing Preferences of Consumers. University of Minnesota.
@phdmoon