Public preferences about secondary uses of electronic health information

Abstract

Importance: As health information technology grows, secondary uses of personal health information offer promise in advancing research, public health, and health care. Public perceptions about sharing personal health data are important for establishing and evaluating ethical and regulatory structures to oversee the use of these data.

Objective: To measure patient preferences about sharing their electronic health information for secondary purposes (other than their own health care).

Design, setting, and participants: In this conjoint analysis study, we surveyed 3336 adults (568 Hispanic, 500 non-Hispanic African American, and 2268 non-Hispanic white); participants were randomized to 6 of 18 scenarios describing secondary uses of electronic health information, constructed with 3 attributes: uses (research, quality improvement, or commercial marketing), users (university hospitals, commercial enterprises, or public health departments), and data sensitivity (whether it included genetic information about their own cancer risk). This design enabled participants to reveal their preferences for secondary uses of their personal health information.

Main outcomes and measures: Participants responded to each conjoint scenario by rating their willingness to share their electronic personal health information on a 1 to 10 scale (1 represents low willingness; 10, high willingness). Conjoint analysis yields importance weights reflecting the contribution of a dimension (use, user, or sensitivity) to willingness to share personal health information.

Results: The use of data was a more important factor in the conjoint analysis (importance weight, 64.3%) than the user (importance weight, 32.6%) and data sensitivity (importance weight, 3.1%). In unadjusted linear regression models, marketing uses (β = -1.55), quality improvement uses (β = -0.51), drug company users (β = -0.80), and public health department users (β = -0.52) were associated with less willingness to share health information than research uses and university hospital users (all P < .001). Hispanics and African Americans differentiated less than whites between uses.

Conclusions and relevance: Participants cared most about the specific purpose for using their health information, although differences were smaller among racial and ethnic minorities. The user of the information was of secondary importance, and the sensitivity was not a significant factor. These preferences should be considered in policies governing secondary uses of health information.

Figure 1. Effect of Health Information Sharing Attributes on Willingness to Share by Race

The Figure shows six of the eighteen conjoint scenarios. In each, the sensitivity of the health information is held constant (“low”). The user, “public health department,” is not shown here. The Figure shows the interaction of race and ethnicity with the conjoint attributes. The coefficients represent changes in willingness to share health information on a 1–10 scale (1=low, 10=high).

Figure 2. Confidence in Various Institutions and Organizations to Protect Health Information

Respondents were asked, “Next, we are going to name some institutions and organizations in the country. How much confidence do you have in them to protect your health information?” They were offered three response options which are shown in the Figure.