Helping healthcare consumers understand: An 'interpretive layer' for finding and making sense of medical information

Healthcare consumers need to find, comprehend, and interpret health information before making informed decisions. Recent work by others and our own work suggest that mismatches in representations of health information used by consumers and professionals occur at different levels of knowledge representation, such as terminology (i.e., form or surface structure and concept or meaning) and semantic relationships. A challenge for consumer health informatics research is to devise a comprehensive strategy to bridge the gap between consumer understanding and biomedical knowledge at all levels. We propose a framework to inform the design of an 'interpretive layer' to 'mediate' between lay (illness model) and professional (disease model) perspectives, at all levels. In our view, the goal is to assist consumers in identifying terms to describe their needs, finding and understanding relevant information, and applying that knowledge for informed healthcare decision making.