New era for the consumer health informatics research agenda

Abstract

Advances in information technology have signified a shift from institution-centric systems to patient- or consumer-centric ones that support not only disease management but also wellness promotion. These trends are a catalyst for the growth of Consumer Health Informatics (CHI), a sub-domain of biomedical and health informatics that focuses on understanding consumer preferences and information needs in the health care context, and on designing and implementing tools and systems to meet these needs. One of the promising CHI applications is the personal health record (PHR). Several challenges such as the effective interoperability between personal health records and electronic medical record systems, the barriers of the digital divide, various levels of health literacy and access to care, need to be carefully examined in the context of designing, implementing and evaluating PHR systems. Ethical, legal and practical implications of innovative technologies such as wearable sensors and other home-based monitoring technologies also require an in-depth analysis of unintended consequences. This position paper outlines opportunities for CHI researchers to further the evidence base in this ever growing domain of health informatics.