Consumer Health Informatics: A consensus description and commentary from the American Medical Informatics Association members

Background: Although interest in Consumer Health Informatics (CHI) has increased, a consensus definition of CHI does not yet exist. Purpose: To conduct a hypothesis-generating survey of AMIA members regarding definition and research agenda for CHI. Methods: We solicited participation among AMIA members in an Internet-based survey focusing on issues related to a definition of CHI. Results: One hundred thirty-five AMIA members responded, Participants indicated a broad spectrum of topics important to CHI including "self-help for disease management" and "patient access to their own medical records." CHI research was felt to rely heavily on public health methods such as epidemiology and outcomes research, a paradigm shift from traditional medical informatics. Responses indicated a perceived lack of funding and need for further research in CHI. Conclusions: A working definition should emphasize the multidisciplinary nature of CHI, include consumer input into CHI design, and focus on public health approaches to evaluation.