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HICSS 42 Consumer Health Informatics Minitrack6 January 2009

The role of domain expertise in smart, user-sensitive, health information portals

Joanne Evans, Rosetta Manaszewicz and Jue XieCentre for Organisational and Social InformaticsFaculty of IT, Monash University

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Outline

1. Information overload - What’s so special about health care?

2. Smart user-sensitive health information portals

3. Study of role of domain expertise in the design and development of the BCKOnline portal

4. Findings

5. Conclusion

José M. Fonseca, André Mora, and Pedro Barroso, ‘The Web and the new generation of medical information systems’ in Perspectives in Outcome Prediction in Cancer, Elsevier 2006

• Having cancer was like moving from a cosy Dickensian house crammed with antiques, deep sofas, snug corners, and fireplaces to a brand new one that was all windows, skylights and tubular furniture.

Anatole Broyard, Intoxicated by My Illness And Other Writings on Life and Death, 1992.

• I was playing with a whole new vocabulary … and one with which I wasn't at ease. … I had a very slightly better than lay command of science writing … but I couldn't make the facts I was dragging off the Net work for me. I had no way to gauge the relative importance of the words I was reading.

John Diamond, C Because Cowards Get Cancer Too, 1998.

Personal Perspectives from BCKOnline

• I guess the main thing is too many booklets, 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 …

• I found, and that’s because of my personality and the information I need, that I needed authoritative information with a lot of detail … but I did like reading the more in depth discussions from women who had experienced cancer because I need the twofold - both sides - the emotional and the factual.

• Some people want to know everything, but I don’t. I want to know what I need to know … otherwise you can scare the hell out of yourself

• I … found that a lot of the time the information that you get until it suddenly is part of what you are going through is not relevant and therefore … you read a lot of information that you’re not taking in. It’s a process

Manaszewicz, Williamson, & McKemmish, ‘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.

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Features of BCKOnline

• Resources for the portal selected and described by domain experts

– women with first hand experience of breast cancer and extensive knowledge of the medical, supportive and psychosocial information needs of the breast cancer community

• Metadata for resource description reflects the information needs of breast cancer patients, their families, friends and carers

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2. Smart User-Sensitive Information Portal

• a gateway to a virtual, distributed knowledge base of information resources highly relevant to the information and decision support needs of particular communities,

• Smart – apply digital and networking technologies to the

processes associated with the creation, maintenance and use of the portal

• User sensitive– reflect user information needs and values throughout

these processes

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Smart Information Portal (SIP)

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Research Questions

• What are the information needs of those responsible for populating the knowledge repository of a SIP with user centered resource descriptions?

• What aspects of their domain expertise might be codified into information technologies?

• What impact would the availability of such tools have on the construction and configuration of SIP processes?

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3. Study of Domain Expertise

• User sensitive qualitative study • Series of semi-structured discussions

with the BCKOnline domain expert– describing and reflecting on their role in the

portal’s design and development

– reflective analysis of the metadata schema

– walkthrough of resource identification, selection and description processes

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4. Findings

• Pivotal role of the domain expert– not just describing resources but involved in

translating results of the user information needs analysis into the metadata schema and selection criteria for the portal, as well as reflecting their own and other direct/indirect stakeholders needs and values in the portal’s processes and protocols.

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4.1 Attributes of Domain Expertise

1. Medical and lay expertise2. User advocacy3. Awareness of the kinds and styles of

information most valued by the portal’s user community

4. Connection into a range of information networks

5. Understanding of health informatics6. Knowledge of information management

principles

Domain Expertise Quadrant Diagrams

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4.2 Domain expert information seeking

• Contrast between information seeking practices of BCKOnline domain experts and healthcare consumers– Major search engines ‘a last resort’ – Continually monitoring a range of

information channels

Domain expert interface needs to support resource brokering

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4.3 Coverage of the Knowledge Repository

• Target numbers of resources for various topics and audiences derived from the user information needs analysis

• Difference in resource selection practices in the initial setup versus those employed to maintain its coverage and currency

Domain expert interface to incorporate– ways of viewing and analysing topic and audience

coverage– feedback on use of the portal

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4.4 Vocabulary Management

• Hybrid of taxonomy and folksonomy– Balance precision and recall with flexibility

and responsiveness to the changing needs of users

– Exposure to medical vocabularies part of user learning

Better vocabulary management and subject indexing capabilities

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4.5 Connections between processes

• Resource identification, selection and description processes are entwined rather than discrete processes

Service oriented approach to SIP architecture– Domain expert and user interfaces to share a

suite of common configurable components

5. Domain Expert Dashboard

Questions?