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Monash University > Publications > Monash Magazine > Archive > Spring/Summer 2003

Cancer knowledge online

For women with breast cancer, the ability to access timely, relevant and reliable information is a vital component of 'patient empowerment'. RICHARD EWART reports on a web-based resource for breast cancer patients being developed by Monash researchers.

The needs of a young mother who has been recently diagnosed with breast cancer and who lives on a farm are quite different from those of an elderly widow in the advanced stages of the disease, living in the city and whose first language is not English.

Yet existing gateways to online health information resources lack specificity, catering instead to 'generic' breast cancer patients.

Professor Sue McKemmish

However, a team from Monash's School of Information Management and Systems (SIMS) is working with the Breast Cancer Action Group and BreastCare Victoria to develop a web portal that offers information tailored to the needs of individual breast cancer patients.

The head of SIMS, Professor Sue McKemmish, says women already interviewed for the Breast Cancer Knowledge Online project feel inundated with information when they go online, and have no way of working out which options best match their needs.

To overcome these problems, the project team is developing complex user-profiles based on extensive analysis of the breast cancer community as well as focus group interviewing and other qualitative techniques.

Armed with this information, and using a metadata (data about data) repository of user-friendly descriptions of online breast cancer resources, they plan to build an intelligent portal.

The portal will 'know' for example, if a particular resource is highly relevant to women in the early stages of breast cancer, if it is easily understood and if it contains information about the availability of treatment or support services for rural women.

It will enable women to create their own profiles and define their information needs in terms of variables such as age, ethnicity, location, lifestyle and the stage of their disease.

"The portal will present users with a range of 'mix and match' options and then link individual profiles to relevant online resources," Professor McKemmish says. "We will also 'add value' to the portal by providing information that enables users to judge the quality and reliability of resources."

Evaluation and testing of the prototype portal should be completed before the end of the year, with the publication of results due early in 2004.

The Australian Research Council is supporting the project through its linkage program, while BreastCare Victoria and the Breast Cancer Action Group are industry partners.

"The development of portal technology is seen as a vital mechanism in delivering customised information to women living with breast cancer," Professor McKemmish says. "The research team believes the concept of a user-sensitive, intelligent portal could also be applied to other types of medical information for the community, as well as legal and government information."

Action: For more information, contact Professor Sue McKemmish on +61 3 9903 1060 or visit the project website.