Community engagement and consumer participation in health information exchanges

Health care providers and consumers expect to derive significant benefits from electronic health information exchange (HIE), including improvements in the health of individuals and communities. Simultaneously, these benefits are tempered by awareness of costs, competition among providers, and privacy and security concerns. This study presents a critical review and synthesis of 27 surveys, polls, and other consumer engagement efforts published between 2003 and 2010 that were designed to gauge public perception, understanding and opinion regarding HIT and HIE in Oregon and other states. In addition to synthesizing the findings, this review considers the source, sponsor, transparency, and potential media influence on public opinion; the effects of trust in providers and government; and theoretical insights drawn from the social sciences regarding individual decision-making and proclivity for HIE participation. Findings highlight the paradox of an American public that sees potential benefits and expresses enthusiasm about HIE, but at the same time is largely uninformed and wary, and derives many of their opinions from the broader realms of HIT and the Internet in general. Public concern is compounded by low levels of trust in government, which varies considerably among federal, state and local levels, as well as between government and health care providers. Participation in HIE may be positively affected by explicitly addressing concerns about privacy and security risks; providing options for individual control; and offering opportunities for substantive consumer participation in HIE planning, implementation and evaluation. However, since individuals' experience with HIE remains limited, the degree to which such experience may influence perceptions of benefit/risk trade-offs and the decision to participate in HIE remains largely unknown. Framing of benefit/risk trade-offs at the community level may influence individual decisions to participate, and suggests that stakeholder partnerships and direct community engagement strategies will be necessary to overcome technical, social and political challenges.