Breast Cancer Knowledge Online (BCKO)
Welcome to the web site of the Breast Cancer Knowledge Online Project. This project drew on researchers from: Monash University's [EIRG] Enterprise Information Research Group, with industry partners BreastCare Victoria and the Breast Cancer Action Group.
This project had been implemented with the support of the Australian Research Council, through its Linkage program.
Commencing in 2002, the first stage of the project was completed in 2003, and the resulting portal prototype is available at: http://www.bckonline.monash.edu.au
Phase 2 of the project, entitled BCKO2, was successfully completed in 2005.
Customised, in-time access to information impacts significantly on the ability of women with breast cancer to make health and lifestyle decisions. Although there is a plethora of information resources available online for women with breast cancer and their families, research indicates dissatisfaction with its timeliness, relevance, format and quality. Information and decision support needs vary according to disease stage, education, age, location and ethnicity, however the resources are most often designed for a homogenous mass audience.
This project has addressed this issue by analysing the diverse information needs of women with breast cancer and their families and by assessing and describing existing online resources in user-aware ways. The project has designed and prototyped a web-based user-sensitive portal capable of matching user-aware resource descriptions and user needs profiles to provide differentiated access to breast cancer knowledge online.
Breast Cancer Knowledge Online has been supported by the Australian Research Council through its Linkage Programme and has been a joint project of:
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 (doc, 292kb)
Background: The unmet information and decision-support needs of women with breast cancer and their families
"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)
Breast cancer features prominently in the nation"s medical expenditure. It remains the largest cancer killer amongst women with 2,500 deaths annually and 10,000 new cases per annum.(2) Despite the plethora of information resources available online for Australian women with breast cancer and their families, numerous studies have documented user dissatisfaction with the timeliness, relevance, format and quality of breast cancer information provision.(3) Predominantly, the resources are presented from a medical perspective and/or designed for a homogenous mass audience. Breast cancer information resources emanate from a variety of organizations and institutions. Consistency of content and quality varies greatly(4) as does accessibility and useability. Research has detailed the constantly changing information needs of women as they proceed along the breast cancer trajectory(5), yet none of the existing resources attempt to deliver personalised information which meets the dynamic needs of the individual woman and her family. The woman is invariably viewed as a "patient", a member of a uniform group where "one size fits all". Factors such as age, lifestyle, location, ethnicity education and reading levels tend to be overlooked.
Approximately one third of women with breast cancer live in rural or remote areas. Research has also highlighted the paucity of information and support available to these women and their families.(6) The National Breast Cancer Centre has identified information access, psycho-social support and service provision as priority needs in these areas (7).
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
- 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
- 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
- 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
- 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.
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)
|Component||Estimated delivery date|
|User needs analysis and profiling|
|March - April 2002|
|June - October 2002|
|September - October 2002|
|Information resource identification, assessment & description|
|January - December 2002|
|April - June 2003|
|January - June 2002|
|May - December 2002|
|January - March 2003|
|April - June 2003|
|Design & prototype of intelligent portal|
|June - December 2002|
|January - June 2003|
|July - September 2003|
|Re-evaluation||October - November 2003|
|Publication/dissemination of results||November - December 2003|
1. National Health Management Advisory Council, 1998
2. Australian Institute of Health and Welfare
3. For example, Girgis, Afaf and Foot, Glenda (1995). Satisfaction with Breast Cancer Care: A Summary of the Literature 1984-1994, King's Cross, NSW, NHMRC National Breast Cancer Centre and NSW Cancer Council; and Coulter, Angela, Entwistle Vikki and Gilbert, David (1999). 'Sharing Decisions with Patients: is the information good enough?', British Medical Journal, 318: 318-322.
4. Slaytor, Emma and Ward, Jeanette (1998). 'How Risks of Breast Cancer and Benefits of Screening are Communicated to Women: analysis of 58 pamphlets', British Medical Journal, 317 (7153): 263-264
5 For example Bilodeau, B.A. and Degner, L.F. (1996). 'Informational Needs, Sources of Information and Decisional Roles in Women with Breast Cancer', Oncology Nursing Forum, 23: 691-696
6. (Wilkes, Lesley, White, Kate and O'Riordan, Libba (2001). 'Empowerment through Information: supporting rural families of oncology patients in palliative care', Australian Journal of Rural Health, 8: 41-46
7. National Breast Cancer Centre, 1999
8. Existing schema for metadata resource description include Dublin Core (http://dublincore.org/) and the Australian Government Locator Service (AGLS) (http://www.naa.gov.au/recordkeeping/gov_online/agls/summary.html).
9. Cecez-Kecmanovic, D. (2000). 'The Discipline of Information Systems - Boundaries crossed, boundaries pushed', a keynote address at the Conference Transcending Boundaries: Integrating People, Processes and Systems, Brisbane, 6-8 September 2000.
10. National Health InformationManagement Advisory Council, 1999.
11. Interpretivists see themselves as dealing with multiple realities which are socially (Berger and Luckman, 1967) and individually (Kelly, 1956) constructed in particular contexts. Guba and Lincon refer to these multiple realities as layers of an onion, nesting within or complementing each other. 'Each layer provides a different perspective of reality, and none can be considered more "true" than any other' (Guba, Egon and Lincon (1981). Effective Evaluation, Jossey-Bass, San Francisco). See also Berger, Peter and Luckman, Thomas (1967). The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Anchor Press, New York; and Kelly, George (1955) The Psychology of Personal Constructs, Vols 1 and 2, Norton, New York.
12. Williamson, Kirsty (2000) Research Methods for Students and Professionals: Information Management and Systems. Wagga Wagga, NSW: Centre for Information Studies, Charles Sturt University, pp 238-241
13. DISCERN: http://www.discern.org.uk, MITRETEK: http://www.noblis.org/, BIOME: http://biome.ac.uk/guidelines/eval/factors.html.
14. McKemmish, Sue et al (1999). 'Describing Records in Context in the Continuum: The Australian Recordkeeping Metadata Schema' Archivaria, 48 (Fall): 3-43
15. There is a wide range of studies which suggest factors that increase the efficiency of internet-based information resources, including content requirements (Abels, E., White, M. and Hahn, K. (1998) 'A User-Based Design Process for Web Sites', Internet Research: Electronic Networking Applications and Policy 8 (1): 39-48), understanding the target audience(s) (Abels, White and Hahn (1998), and Nel, D., van Niekerk, R., Berthon, J. and Davies, T. (1999). 'Going with the Flow: web sites and customer involvement', Internet Research: Electronic Networking Applications and Policy, 9 (2): 109-116), ease of use (Gefen, D. and Straub, D. (2000). 'The Relative Importance of Perceived Ease of Use in IS Adoption: A Study of E-Commerce Adoption', Journal of the Association of Information Systems 1 (8): 1-30) and navigation flow (Neilsen, J. (1999). 'User Interface Directions for the Web', Communications of the ACM. 42 (1): 65-73.
16. Chin, J.P., Diehl, V.A. and Norman, K.L. (1988). 'Development of and Instrument Measuring User Satisfaction of the Human-Computer Interface', Proceedings of the CHI '88 Conference: Human Factors in Computing Systems, 213-218
17. Dumas, J. and Redish, J. (1994). A Practical Guide to Usability Testing, Ablex Publishing Corporation, Norwood, New Jersey.
Research Team Members - BCKO Stage 2
|Chief Investigators||Professor Sue McKemmish|
|Associate Professor Frada Burstein|
|Associate Professor Julie Fisher|
|Ms June Anderson|
|Research Fellow||Ms Rosetta Manaszewicz|
|Programmers||Mr Andiwijaya Sumartono|
|Mr Sergio Viademonte|
|Mr Kevin Hu|
|Mr Mitchell Slocombe|
|BSE Students (Industrial Experience Project)||Roshini Abraham, Wallace Chan, Sheena Ann Samuel, Hendry Setiawan, and Jack Shen. (under the supervision of Professor Heinz Schmidt and Dr Sita Ramakrisnan)|
Research Team Members - BCKO Stage 1
|Chief Investigators||Professor Sue McKemmish|
|Dr Kirsty Williamson|
|Associate Professor Frada Burstein|
|Associate Professor Julie Fisher|
|Ms June Anderson|
|Research Fellow||Ms Rosetta Manaszewicz|
|Partner Investigator||Ms Sue Lockwood|
|Systems Architect||Dr Sergio Viademonte da Rosa|
|Programmer||Mr Andiwijaya Sumartono|
|Research Students||Ms Chan Cheah|
|Ms Jane Moon|
|Ms Pooja Malhotra|
The Steering Committee included industry partner representatives and research team representatives. Its role was to oversee and monitor the project, ensure that all parties’ interests were kept under review and to “sign off” on deliverables.
The Breast Cancer Action Group was represented by Nicola Bruce. BreastCare Victoria was represented by Ms Pamela Gilbert.
The project Advisory Group was comprised of ‘industry’ and ‘academic’ experts, user representatives and project representatives. It provided a forum for review of work-in-progress, the communication of project outcomes to the health industry, providers of services to women with breast cancer, community groups and the wider community, and the planning of future action based on the deliverables.
Members of the Advisory Group were:
|Mr Andrew Wilson||National Archives of Australia|
|Ms Lisa Innes||Monash BreastScreen|
|Ms Christine Gray||Breastcare Nurse|
|Dr Penny Schofield||Peter McCallum Cancer Institute|
|Dr Norman Eizenberg||University of Melbourne|
|Ms Marilyn Beaumont||Women's Health Victoria|
|Miss Suzanne Neil||Mercy Private Hospital|
|Dr Eric Tsui||University of Technology Sydney|
|Ms Helen Smith||Acumentum|
|Mr Andrew Waugh||CSIRO|
|Prof Alan Rodger||Alfred Hospital|
|Dr Nicole Rankin||National Breast Cancer Centre|
|Ms Leith Richards||Breast Cancer Action Group|
Breast Cancer Action Group
The Breast Cancer Action Group (BCAG) is a non-profit consumer advocacy organisation with 550 members throughout Victoria. The Breast Cancer Action Group's newsletter goes to 1000 people across Australia. Its mission is to reduce the impact of breast cancer on the community by helping women make informed decisions about their treatment through better education, better support and better information availability. BCAG has consumer representatives on a variety of local, state and national committees dealing with breast cancer research and treatment.
BCAG's network of members and its expansive knowledge of the varied needs of, and services available to, women with breast cancer and their families make it ideally positioned to contribute to this research. BCAG has committed substantial in-kind resources to the project.
BreastCare Victoria is a program of the Victorian Department of Human Services, established to oversee the implementation of the Breast Disease Service Redevelopment Strategy 1999-2003. The Strategy promotes an integrated approach to the organisation and delivery of breast care services, with a focus on improving the quality, accessibility and coordination of services in line with evidence-based best practice. BreastCare Victoria has a strong commitment to consumers, both in improving outcomes for women and in promoting their participation in the implementation of the Strategy.
BreastCare Victoria will be involved in the oversight of the project through participation in the Steering Committee, and will advise on the convening of the Advisory Committee. BreastCare Victoria has committed $20,000 for each year of this two year project, along with significant in-kind support.
The BCKO team also acknowledges the contribution of the Distributed Systems Technology Centre (DSTC), who have enabled us to use their HotMeta™ product to develop the portal prototype.
For more information about the Breast Cancer Knowledge Online Project contact a member of the Research Team above.
Commencing in 2002, the first stage of the project is now complete and the resulting portal is available at: http://www.bckonline.monash.edu.au/home/welcome.jsp
In line with the original objectives of the project, the portal represents a workable model or prototype. As such, it requires further development and funding. Some funding has been secured in order to develop Phase 2 of the project - entitled BCKOnline2 - which is currently underway.
BCKOnline - Stage Two (BCKO2) [2005 Onwards]
This project extends the first stage of BCKO, ARC-Linkage 2001-2003 funded research, which has resulted in a design and a prototype BCKOnline portal which provides differentiated access to breast cancer knowledge resources. This portal contains user aware resource descriptions, which it is matching with user needs information profiles. We plan to further extend research portal's metadata repository to move toward the concept of Smart Information Portals, which aims at meeting knowledge and decision support needs of health care consumers for quality online information. We also explore to what extent these approach can be generalised to other areas within the health domain and to online government information provision.
This project seeks to further research in the following ways:
- Extend the ‘intelligence' of the portal by incorporating some adaptive system behaviour.
Current portal does not support intelligence features, eg. “sound like” search, learning and reasoning. We plan to extend the current functionality exploiting a metadata-driven resource management approach.
- Extend the user-centric resource description focus of the portal.
Technical and time factors have limited the prototype's ability to automate some of the aspects of knowledge repository maintenance. We are exploring the use of intelligent technologies to address these deficiencies.
- Frada Burstein
- Julie Fisher
- Sue McKemmish
- June Anderson
- Rosetta Manaszewicz
- Shonali Krishnaswamy
- Sergio Viademonte da Rosa
- Andiwijaya Sumartono
The BCKO2 outcomes will have direct application to the breast cancer community.
BCKOnline - Stage One Completion
|Final Report to the Australian Research Council||June 2004|
|BCKOnline - Portal Usability Report||November 2004|
|Progress Report||June 2003|
|User Needs Analysis: Summary Report||June 2003|
|Progress Report||April 2002|
BCKOnline - Stage One Completion - Final Report to the A.R.C.
Final Report [June 2004]
The research has produced a user-centred portal to breast cancer information resources. Although some further refinement is desirable, and planned, the portal is now available to the breast cancer community. The project has demonstrated that by using a metadata schema to support the matching of users with resources, it is possible to tailor information provision to the particular needs of an individual user. This demonstartes a new approach to online information provision.
- The quality analysis rationale developed for the project will particularly equip women to make better informed health and lifestyle decisions. Information access and patient empowerment are not only important patient rights, but there is a growing body of evidence that they contribute to better clinical outcomes - clearly a significant national benefit;
- These aspects of the portal are of particular benefit to population sectors, such as remote and rural communities;
- There is strong potential for the broader application of the concept to other health areas and other disciplines. This has raised prospects for a number of further research directions and partnerships;
- Using portal technology and metadata schema, the portal addresses the major barriers to successful internet resource discovery by the individual :-
ie. Information overload and relevance.
The portal interface empowers the user to specifically tailor information (discovery and retrieval) according to her specific needs, circumstances and personal values.
- Quality reporting – provides the user with a ‘checklist’ of specific criteria which enables the user to identify and prioritise criteria which are of immediate and specific relevance to her need, and to the type of information sought.
- The research has shown that it is possible to provide information tailored specifically for women, at the time they need it, via a portal which gives them access to worldwide information without overloading them with too much information.
- It has also demonstrated the value of advocacy groups working with research groups to guide the research process. This collaboration has been particularly successful and has meant satisfactory outcomes for all concerned.
- The research has highlighted the challenges of designing a medical search engine that allows information pertinent to the needs of consumers, to be accessed easily. Our organisation has also been exposed to the implications of this type of technology, such as maintenance, quality control, metadata, keeping information up to date, and marketing.
- This program provides the opportunity to strengthen links with research for the overall benefit of the cancer community.
- The project's goals and progress have been reported within the breast cancer community via newsletters and more broadly via print and electronic media. Whenever the research has been reported, to a range of audiences it has attracted much interest. International researchers in ICT, patient information providers, and e-health advocates have recognised its significance and potential adaptability to other information contexts.
One overarching characteristic of the entire project has been the enthusiasm and support for the concept, and for the actual prototype. This has been evidenced in all of the research teams' conference presentations; and certainly demonstrated in the usability testing, and the responses gleaned from the target community – ie. Women and their relatives who have breast cancer, and from breastcare nurses who deal with patients on a daily basis. Further ‘evidence’ would be that, since December 2004, and without a major 'marketing campaign', the number of hits to the portal prototype has exceeded all expectations. At the time of writing, the prototype has received over 3000 hits in the space of 5 months. It is anticipated that with further development and marketing of the service this rate of usewill increase - indicating the benefits to, and the response from, the general community.
BCKOnline - Portal Usability Report [Nov. 2004]
Portal Usability / Evaluation Results
The following section briefly outlines the highlights of the results of the usability testing, which was completed in July 2004. Since this testing, the portal interface has been converted into a html format, and the process of adding another 600 records to the database has begun.
The major findings from the evaluation and usability testing were:
- Ease of use and navigability - user's overwhelmingly reported their success in locating and retrieving materials which catered to their specific
circumstances and needs. This was largely attributed to the 'personalised search page' and its intuitive nature.
- Users reported most favourably on the 'value-added' feature of the quality report. This enabled them to quickly and easily sort retrieved records
according to individual priorities and values
- Users were enthusiastic as to the amount of Australian content available and also the inclusion of materials which were often difficult to locate and
access, such as facilitative and experiential information.
The full "Portal Usability Report" is available here.
Progress Report [June 2003]
Work in Progress
- Resource Selection and ‘Quality’
- Metadata Schema Design
- Portal Design and Software Selection
1. Resource Selection and ‘Quality’
In developing a framework for resource selection the Breast Cancer Knowledge Online team has drawn on James Gardner’s ‘personal outcomes’ perspective in which the success, or outcome, of a medical service or system is measured according to the extent to which an individual user’s expectations of that service or system are met. Gardner identifies three categories of outcomes:
- Clinical Outcomes: which might focus on cure and symptom reduction
- Functional Outcomes: which concentrate on increasing functional status in specific areas
- Personal Outcomes: which focus on items and issues that matter most to people in their lives.
(Gardner, James (1997): Challenging Tadition: Measuring Quality through Personal Outcomes, http://www.ncor.org/article1.htm)
In the context of the BCKOnline portal, such a schema is particularly relevant for the identification, description and final selection of resources. It allows scope for the interplay of individual preferences and values within the processes of indexing, cataloguing etc. For example, the user may simply be interested in only one aspect of a particular topic, yet for another subject area she may require the entire spectrum of materials.
Gardner’s 3 outcome areas may be modified to deal directly with the needs of the breast cancer population:
- Medical outcomes are those related to the treatment and management of disease, such as various treatment options, clinical trial reports, drug news.
- Supportive outcomes may be regarded as psychosocial outcomes; the effect of the disease on the woman and her family; aspects of social and psychosocial functioning either on a temporary basis or as the long-term consequences of the disease; facilitative information which may include addresses of support groups or government assistance information.
- Personal outcomes are those areas which matter most to the woman and/or her family. This may overlap with the psychosocial outcomes, but may be different and generally embody the value system in the life of the individual woman. These outcomes are often based on reflection of the experience of the disease, including its treatment rigours, and incorporate the stories of other women. The ‘voice’ of the health professional would also be included in this category.
In addition to developing the medical/supportive/personal taxonomy the research team is also proposing to organise resources included in the portal according to a number of subject categories reflecting different types of breast cancer; various prevention and risk factors; a range of surgical, medical and radiation treatments; aspects of recurrence and advanced disease; palliative care and complementary/alternative medicine.
The research team is also developing resource selection criteria. Although the criteria are not finalised, the following indicates the team’s current approach to resource selection.
Resources categorised as ‘medical’ must meet criteria for authorship (credentials of creator and publisher must be clear); currency (dates of creation, posting, amendment must be stated); evidence (users will be alerted to the evidential nature of the resource, for example whether it is consensus opinion or personal opinion, based on a randomised clinical trial, case/cohort study etc.; and references (evidence must be cited). Information about the editorial policy and/or review process is also regarded as desirable. The comprehensiveness of a resource, in particular whether it acknowledges areas of disagreement or controversy, is also relevant.
Resources categorised as ‘supportive’ must also meet criteria for authorship and currency. Their purpose (for example educational, promotional, commercial) must also be evident. It is preferred that these resources are also referenced.
Resources categorised as ‘personal’ must establish the ‘credentials’ of the author and publisher. They must encompass a range of views on a particular issues and should have relevance to an Australian context. A panel of experts reflecting a holistic approach to the care of women with breast cancer will also contribute to the selection of resources in this category. Terms of reference for this panel are currently being developed.
The issue of ‘quality assessment’ has been, and continues to be, considered at length by the research team. The project recognises:
- The importance of personal meaning and individual values of the potential user.
- The ‘value’ of diversity in the sense of not privileging information according to source or type or content - the ‘decisions’ are to be based on user predilections and choice.
- The often ambivalent nature of the information seeking process for the individual with a serious illness.
The team’s current thinking is that value-added information about resource ‘quality’ will in part be drawn from the metadata relating to authorship, currency and evidence. They will also draw on models currently used elsewhere (ie HonCode) and the principles contained within these.
2. Metadata Schema Design
Current approaches to web searching generally do not support the delivery of timely information tailored to individual needs to the extent needed for informed decisionmaking. This project proposes a portal which harnesses metadata - structured resource descriptions - to deliver relevant, user specific information. The project has adopted AS5044, the Australian Government Locator Service (AGLS) Metadata Standard, as the starting point for developing a metadata schema which enables user-aware resource description. Several extensions and modifications to the AGLS nineteen element metadata set are proposed, including:
- Extension of the Audience element to attach user profiling information to a resource, including age group, disease stage, information preferences, user type (family situation), locality/care proximity
- Introduction of a Quality element to describe resources in terms of the review process, whether references are provided, evidence type, purpose and balance.
- The AGLS elements Function, Coverage and Mandate will not be used.
- The proposed typology of medical, supportive and personal will be captured using the AGLS Type element.
Research is now underway to confirm the encoding schemes which will be used. A combination of AGLS schema, BCKOnline specific encoding values and tools such as Medical Subject Headings and/or Breast Cancer Victoria Glossary will be used.
3. Portal Design and Software Selection
Research is now underway to develop the BCKOnline prototype portal as an intelligent decision support system. The team is currently investigating how the following portal functionalities should operate in the BCKOnline framework:
Information retrieval - the use of user profiles and user-sensitive resource descriptions is planned as the means supporting user-aware retrieval. The user’s first interaction with the system will be to select a profile that best matches her characteristics and circumstances (age, disease stage etc). This input will facilitate a metadata driven search of resource descriptions in the portal repository, which in turn will point to the user to relevant online or offline resources.
Adaptivity - an adaptive system is continually trying to configure itself so as to match the input data; in a sense, to ‘learn’ from its use. It is not planned for the BCKOnline portal to have advanced reasoning and adaptivity mechanisms, however it will have the potential to monitor requests submitted and thus to guide the future growth of the repository of resource descriptions, and refinement of the user interface.
Prioritising information - matching of user profiles and user-sensitive resource descriptions will provide the user with listings of the most relevant resources.
Explanation facility - an intelligent system should be able to explain to its users both the knowledge it contains and the reasoning processes it applies. In the BCKOnline context, users will be provided with value-added information about resources, including their authority, provenance, currenty and quality rating.
The research team is investigating ‘HotMeta’ - the metadata repository and search engine developed by the Distributed Systems Technology Centre as the probable prototype engine.
Summary Report - User Needs Analysis: June 2003
This phase of the project was completed earlier this year. Fifty-nine women, eleven breast care nurses, and seven partners of other family members participated in focus groups or interviews.
The study used the technique of purposive sampling, often used in qualitative research, to ensure that the major characteristics considered to be relevant were included in the sample and examined in the study. Data collection and analysis took place simultaneously, and new insights were incorporated into subsequent data collection. Categories and themes emerged from the data - a grounded theory approach.
Understanding the Sample
The following figures relate to the 59 women with breast cancer who participated in the user needs analysis.
1. Sample Participants by Age
The following table presents the age distribution in the sample, at time of the study as well as at the time of diagnosis.
|Age at time study||No. of participants||% of participants||Age at diagnosis||No. of participants||% of participants|
2. Disease Stage
88.13% of women participating in the study were in an early stage of the disease and 11.86% had advanced breast cancer.
3. Internet Usage
|Age||% of women in sample*||% friends**|
|15 - 39||75||50|
|40 - 49||56||77|
|50 - 69||17||47|
*% of women in the study who reported that they have used in internet to access information about breast cancer.
** % of women in the study who reported that friends/family used the internet and other sources on their behalf.
Key Issues to Emerge from the Study
Timing of Information Delivery
“now I'm so much further down the track, the information is much more readable and acceptable whereas earlier on it was too confronting. I think now I'm quite comfortable reading things and taking them in, whereas before I couldn't.”
“the main thing is too many booklets, too much stuff to read… I had too much stuff to read. And to find out the information, the specific information that you need to have, you have to read, you have to read through too many things. …. You think ‘Oh boy - there’s too much, too much information here’, but you want to find it, to know which way to find it. Have I got to read through all that to find what I want?”
Relevance of Information
“but I really found that a lot of the time the information that you get, until it suddenly is part of what you’re going through, it’s not relevant and therefore perhaps you have read a lot of information that you’re not taking in. It’s a process.”
Quality of Information
“how do you know which one has credence and which one doesn’t? I mean if you’re going to go into the internet and try to find a site that’s going to tell you something, how do you know that that’s not valid information? Just by reading it? I think that’s a lot of hogwash!”
Format of Information
“That’s what I wanted, I wanted diagrams. For the first time last week I actually saw what invasive (lobular) carcinoma looks like as opposed to a ductal or different type of cancer. I wanted to see exactly what was really going on.”
“all my information is still sitting in the bottom of the drawer and I was diagnosed nearly nine years ago.. I have not opened any of it. My information basically came from talking to other people. I did not want to read because I didn't think I could take it in. It was all too daunting.”
Gaps in Information and its Communication
“My biggest gap is fertility. There’s not enough known about that and I spoke to my surgeon last Monday and I have one child and I was just told blanket, ‘you should wait two years before you have another child’. And my question was ‘what if I do get pregnant?’… And her answer to me…was, ‘well, we don’t know’”.
Accessibility of Information
“I’ve spent ages on the internet wandering all around, looking for things that I don’t really want to know, but I find it interesting, until I think very clearly what is the keyword that I really want to know. And that’s the same with asking questions, that sometimes we just don’t know. We know we want to know something, but we don’t know how to get there.”
“All the terms. All the jargon and the drug names…. It’s not that hard. It’s fairly formulaic. So how come it’s not accessible? There’s stacks of information out there…. I should simply be able to go and find that this is the research, this is the incidence of success. It should have been reasonably easy to do.”
Issues Emerging from Family/Friends Interviews
- Although medical information is important for families and friends at initial diagnosis, partners in particular report a strong need to know other people’s personal stories. This needs seems to be greater, and is unmet to a greater extent, than it is for the women themselves.
- There are substantial gaps in both the facilitative and supportive information available to men.
- Succinct, and/or visual, information is important.
Some Observations about the Findings/Themes
In many areas the research reiterates findings from elsewhere. For example, it is not new to observe that information needs varying according to factors such as age, location or education, or to note the importance of timeliness or the phenomenon of information overload. However, through our qualitative method we have moved beyond a simple understanding that these characteristics have an effect - to obtain in-depth insights about their importance and role. We have also explored how generalisations, such as those regarding age and education, do not take into account people who may not fit the norm.
The truly innovative feature of this research is that it focuses specifically on how available information is best utilised: what type of information is most important at a particular time in the disease trajectory? How is this information best presented at this time? Many of the above observations are in fact expressions of ‘relevance’: information has quality and utility when women perceive it to be relevant.
Progress Report: April 2002
Stage 1: User Needs Analysis
The first of the four stages of the project - the user needs analysis - is nearing completion. This component commenced last year under the auspices of a Monash University Small Grant. To date, 63 women with breast cancer and 11 breast care nurses have participated in either focus groups or individual interviews. The sampling has been purposive, representing various age groups, disease stages, time since diagnosis, education levels, marital status, urban and rural locations and ethnic backgrounds.
The findings support the hypothesis that women with breast cancer have highly personal and varied information needs. In particular the following issues and needs are emerging:
- The range of information required - from brief summaries to in-depth scientific information.
- The desire for visual materials to assist in decision making and understanding.
- Perceived gaps in information for family, friends and, in particular, children.
- Gaps and difficulties in providing information for individuals from non-English speaking backgrounds.
- Concern over currency and accuracy of information.
- Problems of 'information overload' and the timing of information delivery.
- The need for written materials as a 'back-up' for clinician consultations.
- Problems of providing information which is seen as 'relevant' to the individual woman or her family.
- The need for a clinical trial information listing.
- The need for access to resources which provide information on financial and practical matters (for example, information for patients and families in rural areas about finding city accommodation).
- The need for a 'personalised gateway' to information when searching on the internet.
- Increasing reliance on the internet as an information resource by either the individual woman, her family or friends.
Dissemination of Results
Members of the research team have submitted papers or abstracts to the following conferences:
- Electronic Networks - Building Community: Fifth Community Networking Conference, Melbourne, July 2002 (paper accepted)
- Information Seeking in Context, Lisbon, Portugal, September 2002 (paper accepted)
- Information Technology in Rural Areas, Rockhampton, August 2002 (abstract accepted)
- Health Informatics, Melbourne, August 2002 (abstract submitted)
Introductory presentations about the project have been made to a diverse audience as part of the School of Information Management and Systems Seminar Series and to a BreastCare Victoria forum.
Ms Rosetta Manaszewicz has been appointed as the project's full time Research Fellow.
A project Advisory Committee, including consumer, industry and academic representatives is currently being established.
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
Breast Cancer Knowledge Online: Consumer empowerment through metadata-based information quality reporting - Journal of the American Society for Information Science and Technology.
To view an abstract and .PDF version of these papers please click on the links above.
Ms Jane Moon, Assoc. Prof. Frada Burstein
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.
Assoc. Prof. Frada Burstein, Assoc. Prof. Julie Fisher, Prof. Sue McKemmish, Ms Rosetta Manaszewicz, Ms Pooja Malhotra
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
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.
Ms Pooja Malhotra, Assoc. Prof. Frada Burstein, Assoc. Prof. Julie Fisher, Prof. Sue McKemmish, Ms June Anderson, Ms Rosetta Manaszewicz
Download .PDF version of this paper
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.
Ms June Anderson, Prof. Sue McKemmish, Ms Rosetta Manaszewicz
Download .PDF version of this paper
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
Download .PDF version of this paper
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
Download .PDF version of this paper
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
Download .PDF version of this paper
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
Download .PDF version of this paper
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
Download .PDF version of this paper
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.
Prof. Sue McKemmish, Ms Rosetta Manaszewicz, Assoc. Prof. Frada Burstein, Assoc. Prof. Julie Fisher
Consumer empowerment and the role of the expert patient in their own healthcare, enabled through timely access to quality information, have emerged as significant factors in better health and lifestyle outcomes. Governments, medical researchers, healthcare providers in the public and private sector, drug companies, health consumer groups, and individuals are increasingly looking to the Internet to both access and distribute health information, communicate with each other, and form supportive or collaborative online communities. Evaluating the accuracy, provenance, authority, and reliability of Web-based health information is a major priority. The Breast Cancer Knowledge Online Portal project (BCKOnline) explored the individual and changing information and decision support needs of women with breast cancer and the issues they face when searching for relevant and reliable health information on the Internet. Its user-sensitive research design integrated multidisciplinary methods including user information-needs analysis, knowledge-domain mapping, metadata modeling, and systems-development research techniques. The main outcomes were a personalized information portal driven by a metadata repository of user-sensitive resource descriptions, the BCKOnline Metadata Schema, richer understandings of the concepts of quality, relevance, and reliability, and a user-sensitive design methodology. This article focuses on the innovative, metadata-based quality reporting feature of the BCKOnline Portal, and concludes that it is timely to consider the inclusion of quality elements in resource discovery metadata schema, especially in the health domain.
If you have any questions, comments or feedback about BCKO, please contact Frada Burstein.