Health care consumers' preferences around health information exchange

PURPOSE Consumer buy-in is important for the success of widespread federal initiatives to promote the use of health information exchange (HIE). Little is known, however, of consumers' preferences around the storing and sharing of electronic health information. We conducted a study to better understand consumer preferences regarding the privacy and security of HIE. METHODS In 2008 we conducted a cross-sectional, random digit dial telephone survey of residents in the Hudson Valley of New York State, a state where patients must affirmatively consent to having their data accessed through HIE. RESULTS There was an 85% response rate (N = 170) for the survey. Most consumers would prefer that permission be obtained before various parties, including their clinician, could view their health information through HIE. Most consumers wanted any method of sharing their health information to have safeguards in place to protect against unauthorized viewing (86%). They also wanted to be able to see who has viewed their information (86%), to stop electronic storage of their data (84%), to stop all viewing (83%), and to select which parts of their health information are shared (78%). Among the approximately one-third (n = 54) of consumers who were uncomfortable with automatic inclusion of their health information in an electronic database for HIE, 78% wished to approve all information explicitly, and most preferred restricting information by clinician (83%), visit (81%), or information type (88%). CONCLUSION Consumers in a state with an opt-in consent policy are interested in having greater control over the privacy and security of their electronic health information. These preferences should be considered when developing and implementing systems, standards and policies.