Intelligent Portals for Supporting Medical Information Needs - Chapter in Web Portals: The New Gateways to Internet Information and Services, Idea Group Publishing, 2005

User Centric Portal Design for Quality Health Information Provision - Paper presented at the 38th Annual Hawaii International Conference on System Sciences, Big Island, Hawaii, 3-6 January, 2005

User-Centric Portal Design for Quality Health Information Provision: Breast Cancer Knowledge Online - Paper presented at the 15th Australasian Conference on Information Systems, Hobart, Tasmania, 1-3 December, 2004

Breast Cancer Knowledge On Line Portal: An Intelligent Decision Support System Perspective - Paper presented at 14th Australasian Conference on Information Systems, Perth, 26-28 November, 2003

Quality Criteria Models Used to Evaluate Health Websites - Paper presented at 10th Asia Pacific Special Health and Law Librarians Conference, Adelaide, 24-27 August, 2003

Building a User Sensitive Intelligent Portal to Breast Cancer Knowledge to Meet Diverse Information Needs - Paper presented at Enabling Organisations and Society Through Information Systems: 13th Australasian Conference on Information Systems, Melbourne, Australia, December 2002

Breast Cancer Information Needs and Seeking: Towards an intelligent, user sensitive portal to Breast Cancer Knowledge Online
- Paper presented at Information Seeking in Context: The Fourth International Conference on Information Needs, Seeking and Use in Different Contexts, Lisbon, Portugal, September 2002 and published in The New Review of Information Behaviour Research, Volume 3, 2003. Cambridge: Taylor Graham Publishing, 48 Regent St, Cambridge CB2 1FD.

Towards meeting the decision support needs of a community via an 'Intelligent Portal': Breast Cancer Knowledge Online - Paper presented at Improving Quality by Lowering Barriers: 10th National Health Informatics Conference, Melbourne, Australia, August 2002

Breast Cancer Knowledge Online:Supporting the information needs of Rural Women - Paper presented at Using IT: Making it Happen: Information Technology in Rural Areas Conference, Rockhampton, Australia, August 2002

Breast Cancer Knowledge Online: Towards meeting the diverse information needs of the Breast Cancer Community - Paper presented at Electronic Networks - Building Community: Fifth Community Networking Conference, Melbourne, Australia, July 2002

To view an abstract and .PDF version of these papers please click on the links above.

INTELLIGENT PORTALS FOR SUPPORTING MEDICAL INFORMATION NEEDS
Chapter in Web Portals: The New Gateways to Internet Information and Services. Hershey, PA: Idea Group Publishing ISBN: 1-59140-439-8

Ms Jane Moon, Assoc. Prof. Frada Burstein

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Abstract
The aim of this chapter is to review the way portal technology can assist users seeking medical information. There has been an increase in health Internet usage, and better health-care delivery outcomes are predicted as users are better informed when making medical decisions. At the same time, there is much concern about the need for medical portals to meet community information needs. This chapter discusses what constitutes an intelligent portal, discusses desirable portal components and attributes of intelligent portal features, and how thee can be implemented to meet the needs of diverse users. Seven Australian medical Web sites have been analysed according to intelligence features. The results and analysis are presented and discussed, in particular, with respect to their functionality as defined for intelligent portals. The discussion is focused on the extent to which these attributes help users with their information seeking and therefore support their decision-making processes.

USER CENTRED QUALITY HEALTH INFORMATION PROVISION: BENEFITS AND CHALLENGES
Paper presented at the 39th Annual Hawaii International Conference on System Sciences, Big Island, HI, 3-6 January, 2005

Assoc. Prof. Frada Burstein, Assoc. Prof. Julie Fisher, Prof. Sue McKemmish, Ms Rosetta Manaszewicz, Ms Pooja Malhotra

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Abstract
Recent research indicates people are increasingly looking to the Internet for health information. Equally however, there is increasing frustration with the sheer volume, lack of relevance and at times dubious quality of information retrieved. The Breast Cancer Knowledge Online project sought to build a user sensitive portal to assist women with breast cancer and their families overcome these problems and to facilitate the retrieval of information which would better meet the individual and changing needs of users. The research outcomes discussed in this paper describe the approach taken to building the metadata-driven portal, the outcome of usability testing of the portal, and the limitations of such an ambitious project.

USER-CENTRIC PORTAL DESIGN FOR QUALITY HEALTH INFORMATION PROVISION: BREAST CANCER KNOWLEDGE ONLINE
Paper presented at the 15th Australasian Conference on Information Systems (ACIS2004), Hobart, Tasmania, 1-3 December 2004

Assoc. Prof. Julie Fisher, Ms Rosetta Manaszewicz, Prof. Sue McKemmish, Assoc. Prof. Frada Burstein, Ms Pooja Malhotra, Ms Jane Moon

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Abstract
In 2001 a multidisciplinary team was awarded a grant to develop a portal for women with breast cancer. Earlier research indicated that for many women diagnosed with breast cancer the quantity of information was overwhelming and frequently irrelevant to their individual needs. The aim of the project was to develop a portal that allows users to select information resources specific to their needs. Earlier stages of this project have been reported at previous conferences. This paper therefore describes the portal’s development and the evaluation, which confirms the perceived benefits of such a resource with participants overwhelmingly enthusiastic about the portal and its ability to meet their individual information requirements.

BREAST CANCER KNOWLEDGE ON LINE PORTAL: AN INTELLIGENT DECISION SUPPORT SYSTEM PERSPECTIVE
Paper presented at 14th Australasian Conference on Information Systems, Perth, 26-28 November, 2003

Ms Pooja Malhotra, Assoc. Prof. Frada Burstein, Assoc. Prof. Julie Fisher, Prof. Sue McKemmish, Ms June Anderson, Ms Rosetta Manaszewicz

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Abstract
Information provision over the Internet offers little by way of "intelligently" assisting users in retrieving personally relevant information. Web portals are envisaged as tools for matching users information needs in order to enhance their ability for decision-making. This paper looks at portals as a new type of intelligent decision support system, which incorporates problem domain knowledge in order to improve efficiency in information provision. The main focus of the paper is in suggesting how certain characteristics of an intelligent decision support system can be implemented in a portal, which seeks to deliver personalised information to support efficient healthcare decision-making.

QUALITY CRITERIA MODELS USED TO EVALUATE HEALTH WEBSITES
Paper presented at 10th Asia Pacific Special Health and Law Librarians Conference, Adelaide, 24-27 August, 2003

Ms June Anderson, Prof. Sue McKemmish, Ms Rosetta Manaszewicz

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Abstract
Consumer use and reliance on internet health information is rapidly increasing, along with concerns as to the quality of the information provided in the thousands of health websites currently available. Numerous studies have revealed the inaccuracy of information ranging across many areas, and have highlighted the potential dangers this can present to a lay audience requiring consistent and reliable health information. This paper provides an overview of the major quality 'standards', guidelines and criteria such as DISCERN, Hi-Ethics and the AMA Guidelines that have been developed in recent years to specifically evaluate online health information. It then explores how applicable these schemes are to the information needs of the lay consumer, and how the Monash University led team has developed an innovative metadata schema as part of its Australian Research Council funded project "An intelligent user-sensitive portal to Breast Cancer Knowledge Online" (BCKOnline). Through the use of 'Quality' elements and qualifiers in the metadata schema which aim to empower the consumer, the portal prototype will provide users with an assessment of the quality of the resource that can then be applied according to their individual needs and value systems.

BUILDING A USER SENSITIVE INTELLIGENT PORTAL TO BREAST CANCER KNOWLEDGE TO MEET DIVERSE INFORMATION NEEDS
Paper presented at Enabling Organisations and Society Through Information Systems: 13th Australasian Conference on Information Systems, Melbourne, Australia, December 2002

Assoc Prof Julie Fisher, Assoc Prof Frada Burstein, Prof Sue McKemmish, Ms Rosetta Manaszewicz, Ms June Anderson, Dr Kirsty Williamson

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Abstract

The Internet provides access to a plethora of information, with health information being no exception. Portals for guiding users seeking health knowledge are proliferating. A major challenge in their development is filtering the information available in a user-sensitive way. The Breast Cancer Knowledge Online (BCKOnline) project addresses the challenge of meeting the diverse information needs of women with breast cancer and their families through the provision of timely, relevant and reliable information to support decision-making. This paper focuses on how the outcomes of user needs analysis and user-aware resource description will feed into building an intelligent portal prototype to breast cancer knowledge.

BREAST CANCER INFORMATION NEEDS AND SEEKING: TOWARDS AN INTELLIGENT, USER SENSITIVE PORTAL TO BREAST CANCER KNOWLEDGE ONLINE
-Paper presented at Information Seeking in Context: The Fourth International Conference on Information Needs, Seeking and Use in Different Contexts, Lisbon, Portugal, September 2002 and published in The New Review of Information Behaviour Research, Volume 3, 2003. Cambridge: Taylor Graham Publishing, 48 Regent St, Cambridge CB2 1FD.

Dr Kirsty Williamson, Ms Rosetta Manaszewicz

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Abstract

Breast cancer features prominently in the medical expenditures of all western societies and remains the greatest cancer killer amongst women. Information regarding the medical, societal and psycho-social aspects of the disease are vital for informed decision making, patient 'empowerment', compliance and improved outcomes. Yet the literature consistently reports dissatisfaction with both the content and delivery mechanisms of breast cancer information. This paper presents a critical review of research on the information needs and information- seeking behaviour of women with breast cancer. Results from the Australian Breast Cancer Information Needs and Seeking (BCINS) study are reported and affirm the importance of user-centered, contextual studies as a means of understanding the continually changing information requirements of a diverse target audience. The end-product of the BCINS study, an online 'intelligent portal', is described. Through the provision of quality, 'tailored' breast cancer resources, the portal is intended to meet the differentiated information needs of the breast cancer community.

TOWARDS MEETING THE DECISION SUPPORT NEEDS OF A COMMUNITY VIA AN 'INTELLIGENT PORTAL': BREAST CANCER KNOWLEDGE ONLINE
Paper presented at Improving Quality by Lowering Barriers: 10th National Health Informatics Conference, Melbourne, Australia, August 2002

Prof Sue McKemmish, Assoc Prof Frada Burstein,
Ms Rosetta Manaszewicz, Assoc Prof Julie Fisher

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Abstract
Consumer reliance on Internet health information is proliferating, creating concern as to the quality and authoritativeness of this information. Given that access to information is a fundamental component of shared decision making, and improved medical, social and health outcomes, the challenge is to provide information which is relevant, timely, accurate and as far as possible meets the dynamic information needs of the user. The paper reports on the Breast Cancer Knowledge Online research project and its 'intelligent portal' designed to support medical and psycho-social decision making through its innovative matching of user profiles, metadata tagging and user-aware resource descriptions. The portal will provide a gateway to both breast cancer sources and resources which have been 'value-added' in terms of accuracy, provenance, and evidence-based best practice protocols.

BREAST CANCER KNOWLEDGE ONLINE: SUPPORTING THE INFORMATION NEEDS OF RURAL WOMEN
Paper presented at Using IT: Making it Happen: Information Technology
in Rural Areas Conference, Rockhampton, Australia, August 2002

Ms Rosetta Manaszewicz, Assoc Prof Julie Fisher,
Dr Kirsty Williamson, Prof Sue McKemmish

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Abstract
One third of Australian women with breast cancer reside in rural areas. Timely information provision assumes even greater significance with geographic isolation and less direct access to services and support systems. This paper focuses on the results of an extensive user-needs analysis, the first phase of a major Australian research project - "An intelligent user-sensitive portal to breast cancer knowledge online". The paper describes the potential role of the Internet and its applicability to the rural sector in providing differentiated, timely, evidence-based material, as well as psycho-social support designed to meet the diverse needs of the breast cancer community.

BREAST CANCER KNOWLEDGE ONLINE: TOWARDS MEETING THE DIVERSE INFORMATION NEEDS OF THE BREAST CANCER COMMUNITY
Paper presented at Electronic Networks - Building Community:
Fifth Community Networking Conference, Melbourne, Australia, July 2002

Ms Rosetta Manaszewicz, Dr. Kirsty Williamson, Prof. Sue McKemmish

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Abstract
Breast cancer remains the largest cancer killer amongst Australian women with 2,500 deaths 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, recognise the importance of timely, accurate, accessible, and 'personalised' information provision to women and their families. An 'intelligent portal' to an online repository of breast cancer resources will be developed to meet the breast cancer community's diverse information 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 personalise, 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.