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

Abstract

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.

Participatory design of a health informatics system for rural health practitioners and disadvantaged women

“…Rapid advances in information and computing technologies increase the number of possible IT solutions that can be applied for healthcare delivery and promotion (Kwon & Kim, 2009;McKemmish, Manaszewicz, Burstein, & Fisher, 2009;Stvilia, Mon, & Yi, 2009;Xie & Bugg, 2009). Yet, the reality is that we are still unable to harness the benefits of health IT nor do we fully understand its impact on health outcomes (Bessell et al, 2002;Copeland & Martin, 2004;de Lusignan, 2005;Evers, 2006;Griffiths, Lindenmeyer, Powell, Lowe, & Thorogood, 2006;Walther, Pingree, Hawkins, & Buller, 2005).…”

7 Data model for integrated patient portals

“…[29,30] While no tool will be able to anticipate all user needs, a needs assessment of a population is necessary to help estimate the types of information required by a specific population. [29,30] While no tool will be able to anticipate all user needs, a needs assessment of a population is necessary to help estimate the types of information required by a specific population.…”

The Cancer Empowerment Questionnaire: Psychological Empowerment in Breast Cancer Survivors

“…For example in breast cancer survivors, empowerment has mainly been reported as a process in the context of online patient education (McKemmish, Manaszewicz, Burstein, & Fisher, 2009;Ryhanen, Siekkinen, Rankinen, Korvenranta, & Leino-Kilpi, 2010) and personal web pages (Pitts, 2004), (online) peer groups (Sharf, 1997;van Uden-Kraan et al, 2008), survivorship consults (Wiljer et al, 2010), oncological rehabilitation (Fisher & Howell, 2010), and as an explicit aspect of professionally led self-help groups (Stang & Mittelmark, 2009. Only one empowerment scale incorporating interpersonal aspects has been validated in cancer patients (Bulsara, Styles, Ward, & Bulsara, 2006).…”