Towards a Breast Cancer Knowledge Resource: an exploratory study of needs for effective and intelligent information delivery (January 2001 - December 2001)

Aims of the project

• To identify the medical and societal information and decision-support needs of women with breast cancer and of associated family and friends.

• To explore how differences in age, educational levels, socio-economic backgrounds, stage of treatment, ethnicity, and residential location in city or rural areas determine these needs.

• To explore the extent that current information resources about breast cancer meet the identified needs.

• To identify gaps in suitable information provision, as part of this process.

• To define the role of information technology in providing differentiated, quality information on breast cancer, to match a range of needs, including decision support.

• To propose a design for a comprehensive electronic breast cancer knowledge resource to promote dynamic, effective delivery of information to meet differential needs and support decisions about medical and life style issues.

• To advance the general understanding of how to develop a differentiated resource, applicable to other areas of information needs.

Research plan

The original plan was as follows:

• Individual interviews with 15 women who have experienced breast cancer or who have been closely involved with someone who has had breast cancer. About one-third of the interviews were to be conducted in Wagga Wagga NSW (and surrounding areas), where the researchers have strong links with Charles Sturt University. Interviewees were to be recruited through community organisations.

• Three focus groups of 6-8 people, two in Melbourne and one in Wagga Wagga. Two of these focus groups were to include participants who have experienced breast cancer. The second Melbourne group was to be made up of carers, relatives and friends, who also need knowledge about breast cancer.

Current Status Continued through the ARC Linkage project, which is now completed.