Consumer empowerment through metadata-based information quality reporting: The Breast Cancer Knowledge Online Portal

Consumer empowerment and the role of the expert patient in their own healthcare, enabled through timely access to quality information, have emerged as significant factors in better health and lifestyle outcomes. Governments, medical researchers, healthcare providers in the public and private sector, drug companies, health consumer groups, and individuals are increasingly looking to the Internet to both access and distribute health information, communicate with each other, and form supportive or collaborative online communities. Evaluating the accuracy, provenance, authority, and reliability of Web-based health information is a major priority. The Breast Cancer Knowledge Online Portal project (BCKOnline) explored the individual and changing information and decision support needs of women with breast cancer and the issues they face when searching for relevant and reliable health information on the Internet. Its user-sensitive research design integrated multidisciplinary methods including user information-needs analysis, knowledge-domain mapping, metadata modeling, and systems-development research techniques. The main outcomes were a personalized information portal driven by a metadata repository of user-sensitive resource descriptions, the BCKOnline Metadata Schema, richer understandings of the concepts of quality, relevance, and reliability, and a user-sensitive design methodology. This article focuses on the innovative, metadata-based quality reporting feature of the BCKOnline Portal, and concludes that it is timely to consider the inclusion of quality elements in resource discovery metadata schema, especially in the health domain.