Research study: Data Sharing Preferences of Consumers

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To find out more about the rapidly digitizing learning health care system that collects, stores, aggregates and uses consumer data for treatment, payment and operations (care, quality and research).

*However, there is little access, control, permission, transparency or discussion of benefits and risks of health data sharing for consumers.

Public policy is moving toward consumer’s owning health data
*However, there are no mechanisms that ubiquitously provide consumer-mediated data management capabilities in the health interoperability ecosystem and current legal regulation does not support

The purpose of this research is to:
*understand predictors of heath data sharing preferences of consumers,
*develop a theoretical model that describes constructs of information privacy, data security, data sharing preferences and consumer-mediated exchange, and;
*use findings to inform the development of data governance policy recommendations that are more appropriate in an era where consumers want to own and control their health data.