Kirsty Williamson, Information and Telecommunications Needs Research, Monash University; Rosetta Manaszewicz, Breast Cancer Action Group, Steering Committee/ Research Associate, SIMS, Monash University); Sue McKemmish, SIMS, Monash University, Frada Burstein, SIMS, Monash University, Julie Fisher, SIMS, Monash University, June Anderson, SIMS, Monash University; Sue Lockwood, Breast Cancer Action Group, Vic.
Breast cancer remains the largest cancer killer amongst Australian women with 2,500 deaths per annum and 10,000 new cases diagnosed annually. Information plays an integral part in the ability to make health and life-style decisions, and to facilitate greater consumer participation in their own health care. Whilst there is a plethora of information available for women, this generally presumes a uniform audience, where 'one size fits all'.
The current project, funded by an Australian Research Council Linkage Grant, recognizes the importance of timely, accurate, accessible, and differentiated information provision to women and their families and will develop an online 'intelligent portal' to breast cancer resources to meet diverse needs. The study involves an extensive user-needs analysis based on focus groups and individual interviews with a purposively selected sample to represent a range of women and their families.
Field work has indicated that variables such as age, ethnicity, educational level, disease stage and psychological makeup are vital determinants in the demand for information. The data will be matched with authoritative existing breast cancer resources, both in print and online. In order to address the 'personalised' information needs, an innovative descriptive metadata schema which matches user profiles with resources will be developed and form the basis of the IT prototype architecture designed to deliver personalized, quality information.
The paper, will give an overview of the scope and goals of the project. It will discuss the range of information needs which will be met through the intelligent portal.