Health data provide significant insights to providers, consumers, and policy makers as data are transformed into usable information for treatment, evaluation of quality, and costs of care (Green et al., 2013; McGinnis et al., 2010; Tripathi, Delano, Lund, & Rudolph, 2009). Health care data offers the opportunity to fast-track evaluation on the six dimensions of quality care: safe, effective, person-centered, timely, efficient, and equitable (Berwick, 2009; Chaudhry et al., 2006; IOM, 2009). Still, additional evaluation metrics are needed, such as attention to information privacy, systems effectiveness, and legal and public policy support. Health information represents some of the most sensitive personal data available (Harper, 2014). The health data being recorded about people, when aggregated, provide a comprehensive picture of one’s health status and the health of populations of interest (Harper, 2014; Pritts, 2001).
Health information confidentiality, information privacy, and data security are fundamental rights (Markel Foundation, 2006). Confidentiality is the condition under which personal health information, obtained or disclosed within a confidential relationship, will not be re-disclosed without the permission of the individual (National Committee on Vital and Health Statistics, 2006). Information privacy refers to the ability of an individual to prevent certain disclosures of personal health information to any other person or entity (Markel Foundation, 2006). Data security are the protective measures (administrative, physical, and technical safeguards) that limit or grant access to personally identifiable information based on authorization or permissions, according to the Health Insurance Portability and Protection Act (HIPAA; Rothstein, 2007; U.S. Department of Health & Human Services, 2013).
Consumers want assurance that information they share about their health remains confidential, private, and secure (Markel Foundation, 2006). Health care professionals, including providers and health workers, must acknowledge that without assurances, consumers may withhold information (Moon, 2017). Theoretically, withholding information affects quality, safety, and care outcomes and reduces validity and reliability of actionable knowledge in a LHS. Health information at the point of care provides transparency, improves communication, and makes errors more transparent so that the negative effects can be mitigated (Makary & Daniel, 2016; Moon, 2017; Morey, Forbath, & Schoop, 2015).
@phdmoonCopyrighted by Moon, Lisa A. 2017. Health Data Sharing Preferences of Consumers (Dissertation Research). University of Minnesota.