Public trust in health information sharing: Benefits and Skepticisms

 The IOM 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. While there is political will to expand health information networks, public trust in these growing systems as well as the public’s expectations for benefits and/or harms are understudied. To understand the dynamics of public trust in broad data sharing, we fielded a 190-item survey (n=1,024) using a probability-based, representative sample. We conducted regression analyses (OLS) to identify the relationship between trust in the health system and data brokers (including health departments) on the one hand, and beliefs about net benefits and skepticism on the other.  Independent variables included beliefs about deception, expectations of benefit, privacy, and demographic and psychosocial characteristics.  We found that the public is generally trusting of the health system and health departments, and 70% of respondents stated that they have a favorable view of data sharing.  Approximately 40% of the population believes in one or more types of medical deception, including that “the government does not tell the public the truth about the dangers of vaccines.”  A medical deception index (α= 0.79) explained ~25% of the variability in trust in the health system (p<0.001). Those who felt more strongly about deceptive behavior in the health system had less trust in the system (b = -0.3, p<0.001). The magnitude of this effect was comparable to that of having expectations for benefit in the case of public health departments.  The public’s trust of technological change that promotes information sharing 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.