An Intelligent, User-Sensitive Portal to Breast Cancer Knowledge Online

PHASE ONE OVERVIEW

Background: The unmet information and decision-support needs of women with breast cancer and their families;

Addressing the need for customised, in-time access to breast cancer knowledge;

Project Benefits

Project Methodology

Project Timetable

BCKOnline Metadata Schema

“Consumers’ access to information and the ability to make decisions about their own health and well-being are important rights. In addition there is a growing body of evidence to support the argument that greater consumer participation in health care improves clinical outcomes.” (1)

Addressing the need for customised, in-time access to breast cancer knowledge

This project aimed to:

• investigate and analyse diverse information needs amongst women with breast cancer and their families
• identify and analyse existing knowledge resources
• design an appropriate scheme for the description of these resources, in order to support differentiated online information access
• develop and prototype a design for a web-based user-sensitive portal to breast cancer knowledge online.
  

Together, these four strands of the project resulted in an intelligent interface capable of matching user-aware resource descriptions and user needs profiles, providing a user-sensitive gateway to breast cancer knowledge online.

The notion of a user-sensitive portal is innovative in several respects:

• The development of a metadata schema for user-aware resource description will involve pioneering methodologies for translating a user-needs analysis and information resource assessments into a metadata schema specification. Existing metadata schema are generally resource-centric and modelled on traditional bibliographic approaches. They have few elements that deal directly with the target audience.(8)
• New approaches to systems analysis and implementation will be required to meet the needs of users in their role as participants in social interaction processes.(9)
• New knowledge management systems approaches will be applied to design an interface capable of matching complex user needs profiles with user-aware resource descriptions.
• The prototyping of the portal design envisaged for this project will test the capacity of existing best practice in this area to provide differentiated access to information.

• For women with breast cancer and their families this project will provide a quality, ‘evidence-based’, single entry point supporting customised, in-time information access. Users will be able to engage in informed decision making at their own pace and with privacy. Consumers’ access to information about their own health is an important right in itself, however there is evidence that the ability to make informed treatment and lifestyle decisions improves clinical outcomes, in particular by supporting better treatment compliance and greater uptake of evidence-based practice.(10)
• For women in rural and remote areas the project will address some of the inequities of information access posed by distance. Any internet based resource addresses this issue to some extent, however, this project will specifically research the additional information and decision support needs of women in rural and remote areas and incorporate this understanding into the interface design.
• The user needs analysis and resource assessment will identify any current gaps in information content, enabling medical, government and consumer bodies to improve information provision in these areas.
• The project will contribute to the development of national benchmark for the quality control of breast cancer information provision by providing a knowledge of user needs, qualitative assessment of existing resources and models for user-sensitive information provision. As well as providing feedback to information providers on any shortcomings in the resources they currently produce, over time this will lead to a reduction of unnecessary duplication of information, with implications for improved efficiency across the health sector.
• Both the metadata schema and the portal design will provide models which are transferable into other areas of information provision within and beyond the health sector. For example, the concept of a user-aware portal could be applied to the provision of community legal information or consumer information about government information resources and services.
• The project will advance understandings and methodologies in the IT and metadata communities in relation to developing user-sensitive intelligent interfaces supported by metadata schemas.
• The project will provide industry and consumer-oriented IT research training in the context of an innovative multidisciplinary study.
• The research will position Australia as a leading authority internationally in the area of intelligent interfaces to knowledge online using user-needs profiling and user-aware metadata resource descriptions.
  

There were four components to the project:

1. User needs analysis and profiling
2. Information resource identification, assessment and description
3. Development of a metadata repository of user-aware resource descriptions
4. Design and prototyping of an intelligent portal

1. User needs analysis and profiling

Aims:

• To identify and profile the medical and societal information and decision-support needs of women with breast cancer and their 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 determine the extent to which current delivery of information resources (online and off-line) meets these needs.

Recently social science research methods have emphasised contextualised understandings of human behaviour. This has resulted in interpretivist research (11) becoming increasingly popular, in particular ethnographic and other naturalistic methods. A user-centered approach is considered crucial to understanding the multiple perspectives, needs, individual and social contexts of a range of different people who are seeking information about breast cancer.

In 2001 Dr Kirsty Williamson received funding through the Monash Small Grants Scheme to conduct an exploratory study of the user-needs associated with effective and intelligent information delivery amongst women with breast cancer. The fieldwork commenced in this pilot project was extended as part of the larger Breast Cancer Knowledge Online project. The purpose of the fieldwork, under the direction of Chief Investigator Dr Kirsty Williamson, was to understand the differentiated information needs of people with breast cancer and their families. It involved:

• Individual interviews with about 30 women who had experienced breast cancer and with family members and friends closely involved with someone who has had breast cancer. About one-third of these interviews were conducted in rural areas. A sample, purposively selected to represent various demographic variables to be included in the study, will be recruited through community organizations.
• Approximately six focus groups of 6-8 people (including those undertaken as part of the pilot project). Four of these (three in Melbourne and one in a rural area) included women who have experienced breast cancer and two (one in Melbourne and one in a rural area) will be comprised of carers, relatives and friends. Again, the sample was purposively selected to represent various demographic variables to be included in the study, and were recruited through community organizations.

This combination of individual interviews and focus groups minimises the weaknesses and maximises the strengths of each method(12). The resulting data was analysed using NVivo, a package for the analysis of qualitative data.

2. Information resource identification, assessment and description

Aim:

• To identify, assess, quality rate and describe relevant resources and identify gaps in information provision, with reference to the user needs analysis and profiling.

The burgeoning of the internet health industry is cause for both concern and optimism. It represents the democratisation of healthcare information whilst simultaneously facilitating ‘quackery’, commercialism and plain inaccurate medical ‘knowledge’. Much of the recent literature focuses on the ‘quality’ of health sites – their potential uses and dangers. Under the leadership of Chief Investigators Associate Professor Julie Fisher and Ms June Anderson and with input from experts from BreastCare Victoria, this component will identify sources which meet the criteria established by organizations such as DISCERN, MITRETEK, BIOME(13) and the JAMA guide to Quality on the Net’. Assessment in accordance with these criteria takes into account accuracy, source, authorship, commercial affiliations and extent of evidence-based protocols. Furthermore, each site was evaluated according to defined criteria, specified from the results of the user needs analysis, which address issues such as reading levels, intended audience, use of medical terminology and suitability for the differing needs of the target audience for the portal. The outcomes of the metadata component (below) were also to be used in the description of the resources.

3. Development of a metadata repository of user-aware resource descriptions

Aims:

• To specify metadata schema requirements to enable user-aware resource description and facilitate the matching of resources to user needs profiles.
• To develop a metadata repository or database containing user-aware descriptions of relevant information resources.

This component, directed by Chief Investigator Sue McKemmish, is a critical component of the portal. It enables the matching of user needs profiles to information resources and the provision of value-added information to the user about the resource being accessed (for example, its provenance, authority, authoritativeness, quality, any conditions and costs associated with access). Specification of an appropriate metadata schema (which identifies in a standardised way the elements needed to describe a resource) is a critical part of this component of the project. Existing metadata schemes (Dublin Core, Australian Government Locator Service) were investigated to determine the extent to which they meet the requirements of the project. They were then extended and customised to enable the description of resources in ways sensitive to the needs of target audiences. Schema analysis, metadata modelling, concept mapping of metadata schemas and standards and empirical instantiation (which populates models with examples) were then used to develop the schematic structure for the metadata repository(14). New methods were developed to translate the outcomes of the user needs analysis, user profiling and resource assessment into specifications for metadata/metadata schema requirements for user-sensitive resource descriptions to be stored in the metadata repository. The final stage of this component involved designing and building the metadata repository itself, and populating it with the resource descriptions.

An APAI scholarship holder will be engaged in this component of the project.

4. Design and prototype of an intelligent portal

Aims:

• To specify design requirements for an intelligent interface which provides differentiated access to breast cancer knowledge online through a single entry point.
• To build a prototype of the interface.
• To test the delivery of information relevant to users needs.

An intelligent, user-sensitive portal is a web-based interface which meets information needs by matching user needs profiles with relevant resource descriptions and provides a gateway to the resources themselves. Chief Investigator associate Professor Frada Burstein directed the design and prototyping of the interface.

An APAI scholarship holder engaged in the design aspect of this component undertaking a comprehensive analysis of web-based information resources such as intelligent interfaces, portals and knowledge resources within the framework of knowledge management support. The aim of the analysis was to address the research question of how differential user needs can be addressed by an intelligent portal using contemporary knowledge management system approaches. The outcome was a proposal for a system architecture best suited to the project.

The prototype is a web application built on a Windows XP Platform, using MySQL as the back end database, Java programming language, Javascript and HTML pages at the user interface level. It is a three layer application based on HotMeta™, an entry-level document metadata product consisting of a broker that combines the functions of a metadata repository and a search engine (HotMeta™ was developed by the Distributed Systems Technology Centre (DSTC)).

Research into factors which increase efficiency(15), together with the findings of the user-needs study informed the design. The prototype was extensively tested using the original focus groups and a formal user satisfaction instrument (for example one available from Chin, Diehl and Norman, 1988(16)). It was also trialled in actual clinical settings where breast cancer patients and their families were able to evaluate it against the major objectives of timeliness and individual relevance. This included usability testing using the methodology recommended by Dumas and Redish (1994). (17)