Public Trust in Health Information Sharing and Health Systems in the United States: A National Survey

Background:  The U.S. Institute of Medicine’s Report, Digital Infrastructure for the Learning Health System, calls for “weaving a strong trust fabric” among stakeholders, including the general public, to facilitate broad data linkage and sharing.  The texture and quality of this “fabric” is understudied, particularly with respect to attitudes and beliefs about information sharing held by non-experts.  This presentation adds to a growing body of trust research by measuring trust at the individual, institutional, and system level.  It examines four key dimensions of trust – fidelity, competency, integrity, and global trust – and key determinants such as awareness, beliefs, and previous experience.  Methods:  To understand the dynamics of public trust in broad data sharing as a common practice in the context of the U.S. health system, we are administering a 232-item questionnaire (n=1000) using probability-based web panel designed to be representative of the United States and administered by the GfK Group (formerly Knowledge Networks).  Findings: Preliminary results from a pilot survey (n=500) indicate that 60% have a somewhat or generally favorable view of information sharing among health care providers, hospitals, public health, and insurance companies.  62% feel that it is fairly or very likely that the quality of health care will be improved with increased data sharing, while 49% see health information sharing as likely to benefit personal health care. Most feel that the health system is inadequately regulated (54%) and that the system would be improved by monitoring by independent oversight (63%).  Discussion:  The public’s trust of technological change that promotes information sharing in the U.S. health system is not a foregone conclusion.  Understanding the nature of the public’s skepticism and uncertainty about the risks and benefits to themselves and their communities of interest can inform future development of information governance and data brokerage.