Diane Daly and Sara Owens
IRLS 515 with Hong Cui
Spring 2010
A Metadata Schema Designed for Consumer Breast Cancer Research in the United States
In 2002 the Breast Cancer Knowledge Online (BCKOnline) portal project was begun by Australian researchers, in partnership with advocacy groups for women with breast cancer in Australia. The purpose of the project was to test the efficacy of an online portal directing consumers to breast cancer information resources online with reporting feedback on the quality of information that was accessed. The project, which is still operational at http://www.bckonline.monash.edu.au/ , proved to be extremely effective in conveniently providing higher quality information to women and their supporters, users who would otherwise have searched for information using search engines with no informing or vetting process for information source or quality.
In the United States, patients with breast cancer and their supporters are in similar need of effective online tools to aide in their searches for breast cancer information, yet no schema has been designed to fit their needs. American users can access the Australian portal, but it was designed for Australian users both in its vocabulary standards and in its consumer development phases, presenting the possibility of misunderstandings due to differences in culture, spelling, and location of physical resources. We have therefore chosen to design a metadata schema based on the Australian BCKOnline schema, including the BCKOnline Quality element, which was the product of extensive research on the part of the Australian team. We have made the following modifications to the BCKOnline schema, altered to meet the searching needs of American users today:
- We have updated the use of the legacy DC elements and Australian Government Locator Service (AGLS) elements to DCterms, choosing simplification over several of the elements used by the BCK Online schema, for the sake of currency and interoperability.
- We have used DCterms.subjectheading.MESH, which is the US National Library of Medicine (Medical Subject Headings) scheme, to ensure terminology, spellings, and subject encoding are those used in the US. We have made this element repeatable to more extensibly describe a variety of subjects and therapies.
- We have made the Publisher element optional, as the creator of online resources is often the publisher.
- Regarding DS Audience Elements: We have added the DS.Audience element to allow one repeatable, extensible element with which to refine description, where appropriate, between resources directed for those "Under 40" and "40 and over"; between "Early", "Advanced", and "Recurrent" diagnoses addressed; and between "plain" and "scientific" information.
Key to Identifiers
DCterms: Declared Dublin Core Metadata Initiative (DCMI) Terms property
DS: Element created for Consumer ePatient Breast Cancer Research in the United States
BCKO: Declared Breast Cancer Knowledge Online property
The key for the element requirements is:
R = Required
O = Optional
Element:
Name: Creator
Identifier: DCterms.creator
Definition: Creator of the resource
Required: R
Repeatable: Y
Element:
Name: Publisher
Identifier: DCterms.publisher
Definition: Publisher of the resource
Required: O
Repeatable: Y
Element
Name: Title
Identifier: DCterms.title
Definition: Title of the resource
Required: R
Repeatable: Y
Element:
Name: Language
Identifier: DCterms.language
Definition: Language of the resource
Required: R
Repeatable: Y
Element:
Name: Subject
Identifier: DCterms.subjectheading.MeSH
Definition: Topic of the content of the resource, expressed in NLM Medical Subject Headings
Required: R
Repeatable: Y
Comments: Uses MeSH vocabulary encoding scheme
Element:
Name: Audience
Identifier: DS.audience
Definition: Age of audience for which the resource is intended
Required: R
Repeatable: Y
Comments: Preferred values are "Under 40" or "40 and over"; "Early", "Advanced", and/or "Recurrent"; "Plain" or "Scientific". It is expected that this element will be repeated to reflect audience age, diagnosis, and desired complexity level.
Element:
Name: Format
Identifier: DCterms.format
Definition: Format of the resource
Required: R
Repeatable: Y
Element:
Name: Date
Identifier: DCterms.date
Definition: Date of the resource
Required: R
Repeatable: N
Comments: In ISO 8601 format
Element:
Name: Identifier
Identifier: DCterms.identifier
Definition: Uniform Resource Locator
Required: R
Repeatable: Y
Element:
Name: Rights
Identifier: DCterms.rights
Definition: Copyright or other rights-related information
Required: R
Repeatable: Y
Element:
Name: Type
Identifier: DCterms.type
Definition: Type of resource
Required: R
Repeatable: Y
Comments: Preferred values are "Medical", "Personal", and/or "Supportive"
Element:
Name: Quality of Balance
Identifier: BCKO.Quality.Balance
Definition: Determination of how balanced the resource is
Required: R
Repeatable: Y
Comments: Values are "Balanced", "Controversial", and "Controversial Issue-Noted", but other values will be accepted
Element:
Name: Quality of Creator
Identifier: BCKO.Quality.Creator
Definition: Determination of professional or institutional station of the resource creator
Required: R
Repeatable: Y
Comments: This element will help users determine the credentials and motivations of the creator of the element. Example values include "Clinician", "Layperson", "Cancer survivor", and "Drug company".
Element:
Name: References Provided Quality
Identifier: BCKO.Quality.ReferenceProvided
Definition: Determination of whether or not references have been provided to support information in the resource
Required: R
Repeatable: N
Comments: Values are "Yes" or "No"
Element:
Name: Quality of Review Process
Identifier: BCKO.Quality.ReviewProcess
Definition: Determination of who reviewed the resource
Required: R
Repeatable: Y
Comments: Example values include "Editorial Board", "Peer Review", and "None evident"
Sample Information Package:
|
DCterms.creator
|
Ollila, David W.
|
|
DCterms.creator
|
Stitzenberg, Karyn B.
|
|
DCterms.publisher
|
H. Lee Moffitt Cancer Center & Research Institute
|
|
DCterms.title
|
Breast cancer sentinel node mestastases: histopathologic detection and clinical significance
|
|
DCterms.language
|
English
|
|
DCterms.subjectheading.MeSH
|
Early breast cancer
|
|
DCterms.subjectheading.MeSH
|
Diagnosis
|
|
DCterms.subjectheading.MeSH
|
Surgery
|
|
DS.audience
|
Age: Under 40
|
|
DS.audience
|
Age: 40 and over
|
|
DS.audience
|
Disease stage: Early
|
|
DS.audience
|
Disease stage: Recurrent
|
|
DS.audience
|
Disease stage: Advanced
|
|
DS.audience
|
Information preference: plain
|
|
DS.audience
|
Information preference: scientific
|
|
DCterms.format
|
Online pdf
|
|
DCterms.date
|
Issued: 2001-09-01
|
|
DCterms.identifier
|
http://www.moffitt.org/CCJRoot/v8n5/pdf/407.pdf
|
|
DCterms.rights
|
Copyright 2003, H. Lee Moffitt Cancer Center & Research Institute
|
|
DCterms.type
|
Medical
|
|
BCKO.Quality.Balance
|
Controversial Issue-Noted
|
|
BCKO.Quality.Creator
|
Clinician
|
|
BCKO.ReferencesProvided
|
Yes
|
|
BCKO.ReviewProcess
|
Editorial Board
|
Mckemmish, S., Manaszewicz, R., Burstein, F., & Fisher, J. (2009). Consumer empowerment through metadata-based information quality reporting: The Breast Cancer Knowledge Online Portal. Journal of the American Society for Information Science and Technology : JASIST. (9), 1792.
McKemmish, S., Manaszewicz, R., Cheah, C. BCKOnline Metadata Schema, Version 1.0. Retrieved from http://www.infotech.monash.edu.au/research/centres/cosi/projects/bcko/bcko-metadata-schema-version16.doc
Monash University. Breast Cancer Knowledge Online. [Information Portal]. Retrieved on February 19, 2010 from http://www.bckonline.monash.edu.au/
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