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NCI Behavioral Research Measures Project Tom Milke Senior Systems Analyst Westat Seattle Oct 25, 2007
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NCI Behavioral Research Measures Project
Tom MilkeSenior Systems AnalystWestatSeattle Oct 25, 2007
Foundations for Enablement of Cyberinfrastructure*
Community Agreement on Vocabulary, Structure of Measures
Structured Data Systems, Interoperability, Common Messaging Standards
Integrative Applications
*Courtesy of Christopher Greer, NSF
State of Behavioral Science*
Community Agreement on Vocabulary, Structure of Measures
Structured Data Systems, Interoperability, Common Messaging Standards
Integrative Applications
*Courtesy of Christopher Greer, NSF
Behavioral
Research
Current Landscape of MeasuresPublic Health Surveillance
National Surveillance Data (e.g., NHIS, BRFSS, NHANEs)
Routine behavioral surveys (e.g., HINTS) Field based data
University Laboratories
Individually published papers
Locally maintained data sets
Medical Research Settings
Patient Charts
Clinical trials data
Local Interventions
Measurement Concepts in Behavioral Medicine
Nicotine Dependence
Construct Measure
*i.e., measures can be used interchangably to assess the construct. Usage would vary depending on population, modality, and purpose.
Alternative Measures with Psychometric Equivalencies*
BRP Proposal: Create a Database of GRID Compatible Measures
Construct Measure
http://dccps.cancer.gov/brp/constructs/index.html
Health Behavior Measures
Purpose of the Measures Database:
Create an online resource of commonly used behavioral measures in cancer controlFacilitate access by applicants, grantees, and other scientists.Help the Behavioral Research Program (BRP) realize its mission of encouraging rigorous, replicable research applied to behavioral issues in cancer control.
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Phase I Environmental Scan
A static resource was already available through the BRP web site.
Westat conducted a pilot project to do an environmental scan of comparable resources currently available.
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Results of Environmental Scan
Identified illustrative web sites that routinely make measures available to their respective communities Profiled sites on set of criteria Identified current practices
Made recommendations for how to structure the BRP measures site
Developed comprehensive list of attributes about measures to offer to researchers for identifying measures of interest
Wireframes to show structure and elements for UI
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Moving Forward
Next step would be to develop a small, testable prototype to illustrate feasibility.
Ideally, the prototype should follow the principles associated with caBIG tool development.
The blueprint should be articulated using Unified Modeling Language (UML);
The data should be discoverable on “The Grid”. The semantic structure of the elements should
correspond to NCI’s Enterprise Wide Vocabulary as instantiated in the caDSR.
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Moving Forward
The measures study team recognized that many population science variables do not currently exist in the caDSR.
One of the outcomes of the project should be to gain a better understanding of the process needed to register Population Science data elements within the global caDSR or, alternatively, in a DCCPS-managed subset of the caDSR data space.
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Moving Forward – Questions/considerations
What would it take to incentivize usage and to construct an online community resource?
Should the process be top-down, a resource-intensive activity that would make BRP a Clearing House for vetted measures; or should it be “bottom-up,” using social technologies to facilitate community data sharing?
Preference for creating a self-perpetuating resource that is driven and updated by the extramural community.
Bob Croyle pointed to the success of online knowledge sharing tools such as Wikipedia and PubCan as models.
Use Case
• Grantee required to use CDE’s
• Browses measures based on construct, population, mode, psychometric qualities
• Selects measure for use in grant submission, research
• Provisions for adding new measures
• Community vetting (e.g., usage statistics)
Health Behavior Measures
Use Case Diagram
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Domain Model
cd Domain Model
The Domain Model is a view of all the objects that make up an area of interest, and their relationships. It is used to capture the significant objects within a system, organization or any targetdomain.
Construct
- ConsensusDefinition: char- Synonyms: char- RelatedTerms: char
Measure
- ConceptualBasis: char- MeasureValue(): char- NumberOfQuestionItems: int- Reliability: short- ScoringMethod: char- Validity: short- AlternativeForms: char
QuestionItem
- QuestionText: char- ValidationRules: char- QuestionItemFormat: char
+ Validate() : void
StudySubject
- InformedConsentSignatureText: char- status: char- statusEndDate: dateTime- stausStartDate: dateTime- studySubjectIdentifier: char- studySubjectState: char- subgroup: char
+ AnswersQuestions() : void+ Refuse() : void
DataCollectionProtocol
+ InitiatesDataCollectionInstrument() : void
DataCollectionInstrument
- DataCollectionMode: char- InstrumentSectionRoster: char- InstrumentSectionHierarchy: int
«interface»
InstrumentAdministration
- EndTimeDate: dateTime- StartTimeDate: dateTime- ResultCode: char
+ PresentsQuestionItem() : void+ Validate() : void
«enumeration»InstrumentSection
enum+ QuestionItemRoster: char+ QuestionItemOrder: char+ ValidtationRules: char
+ Validate() : void
tblInstrumentResultsRecordsResponse
«Release 1.0»
:HealthCareProv ider
«Release 1.0»
:Laboratory«Release 1.0»
:PerformedActiv ity«Release 1.0»
:Specimen
Addional Classes from the BRIDG model, such as Health Care Provider, Laboratory, Performed Activity and Specimen, may be relevant to this domain.
Westat/TXM Oct 10, 2007
«realize»
+IsComposedOf
+IsPartOf
+IsARepresentation of
+IsDerivedFrom
+CapturesResponse +StoresResponse
+AnswersQuestion
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The Measures Class and Its Attributesud Primary Use Cases
MeasureAttributes
column*PK Measure_ID: History: AuthorName: AuthorContactInfo: DateCreated: TargetPopulation: MajorUsages: SourceReferences: ScaleChangesOverTime: DataSharingCapability: Scale Characteristics : Domain or Research Area: Number of items in scale: BriefOverview: Administration Details : Psychometric Properties: Reliabil ity Evidence and/or Coefficient: Validity Evidence: MeasureAttributes:
PK+ PK_MeasureAttributes()unique+ UQ_MeasureAttributes_Measure_ID()
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Ancient Chinese Classification of Animals The Analytical Language of John Wilkins," by Borges describes the Celestial Emporium of
Benevolent Knowledge, in which it is written that animals are divided into: those that belong to the Emperor, embalmed ones, those that are trained, suckling pigs, mermaids, fabulous ones, stray dogs, those included in the present classification, those that tremble as if they were mad, innumerable ones, those drawn with a very fine camelhair brush, others, those that have just broken a flower vase, those that from a long way off look like flies.
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We want to store and search for constructs: Challenge at the vocabulary level
What’s a Construct?(Precoordinated terms)
Adolescent Smoking Dependence
Youth Teen Categorized Age
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Functions/Features Under Consideration Search Capability (simple, advanced, index) Resources
Measure comparison tool Helps (how to evaluate measures, ways to frame searches) Related links FAQs
Community/Sharing Measure submission process Reviews (read and write) Notifications “Most viewed…” measures/constructs Recommendations
Personalized workspace Saved search results, Personal reviews, Personalized notifications
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Search Constructs & Measures
Share/Community
Quick Links
New!
Help
Contact Us
Search Constructs & Measures
Evaluate Measures
Share/ Community
Search Constructs & Measures
Resources/ Help and Links
My Research Space
ResearcherResources -
Your search yielded the following results:
All measures Show only downloadable measures∙Number of
Recommendations
WISDM-68
Previous 1 2 3….Next
xxx xxxxxx xxx xxxxx xxxxx
Search
Compare Measures
NDSS xxx xxxxxx xxx
xxxxxx
xxxxxx xxxxx
xxxxxxxxxxxxxxxxxCDS - 5
Measure AuthorTarget
Population
Mode of
Admin.
Number of
Items
iTunes Model
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Share/Community
Share/ Community
Search Constructs & Measures
Resources/ Help and Links
My Research Space
ResearcherResources
Quick Links
Help
Contact Us
New!
Evaluate Measures
Search Constructs & Measures
Search Constructs & Measures --
Compare Measures:
Select the measures you would like to compare.
Number of Recommendations
WISDM-68
Previous 1 2 3….Next
xxx
xxxxxx xxx
xxxxx xxxxx
Target
Population
Mode of
Admin.
Number of
Items
x
x
Compare
NDSS
Author
CDS - 5
Search
Measure
xxx
xxx
xxxxxx
xxxxxx
xxx
xxx
xxxxx
xxxxx
xxxxx
xxxxx
Compare Measures
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Select Attributes to Compare
Share/Community
Quick Links
Help
Contact Us
New!
Evaluate Measures
Search Constructs & Measures
Resources/ Help and Links
My Research Space
ResearcherResources
Share/ Community
Search Constructs & Measures
Search Constructs & Measures --
Compare Measures: Add attributes of the measure that you would like to compare:
Author
# of Items
Mode of Admin.
Target Population
Source References>>
<<
All Attributes Attributes to Compare
Continue
Cost
Data sharing capability
Author Contact Info.
# of Recommendations
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Compare Measures
Share/Community
Quick Links
Help
Contact Us
New!
Evaluate Measures
Search Constructs & Measures
Resources/ Help and Links
My Research Space
ResearcherResources
Share/ Community
Search Constructs & Measures
Search Constructs & Measures --
Comparison of Measures:
NDSS WISDM-64
Cost
Data Sharing Capability
Author Contact Information
Number of Recommendations
CDS-5
xxx
xxx
xxx
xxx
xxxxxx
xxxxxx
xxxxxx
xxxxxx
xxx
xxx
xxx
xxx
Attributes
Search
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TAB Model
NCI Header
NCI LeftNav.
All ResearcherResources
My ResearchSpaceHelp and LinksResearcher
CommunitySearch
Constructs and Measures
Dropdown ...
Search Constructs and Measures :
simple search , advanced search ,Index, guide, compare Measures ,
Researcher Community :
"sharing," most viewed, "people who liked X liked Y ...", reviews, site updates,
RSS, tag clouds
Resources , Helps and Links :
links to other sites , tips on how to evaluate measures , help files, FAQ
My Research Space :
profile, my recent searches , my reviews,"people like ME liked Y ...“, site updates
GoSearch for [free text ]
Dropdown list is "all measures and constructs ," "measures ," and "constructs " -- default is to search all measures and constructs .
RSS feeds, notifications of newcontent, tag clouds, guide to search
Discussion
Discussion Points
• What are the sociotechnical solutions to the “common data element” problem? E.g.,– Incentivized data sharing through initiatives?
– Specialized caDSR?
– Vetting bodies for standards in population science?
• Where are targets of opportunity?– Federal surveillance?
– Clinical protocols?
– Behavioral measures in electronic health records?
Discussion Points
• What tools are needed to enable transformations in: discovery, visualization, decision support, fusion, and policy planning?
Discussion Points
• Can Pop Sci SIG create a “blueprint” to guide growth strategically?– Overall vision?– Needed standards investments?– Needed tool investments?– Ethical, social, and legal concerns?– GRID level use case scenarios
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FINIS
Rick Moser [email protected] Brad Hesse [email protected] Jennifer Crafts [email protected] Tom Milke [email protected]
