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In the last twenty years, numerous studies have empirically examined decision making processes and outcomes in clinical settings. One of challenges that the shared decision making (SDM) research community faces is a paucity of standardized measures of the SDM antecedents, process, quality, and outcomes.
The GEM-Shared Decision Making Workspace (GEM-SDM), a project initiated by the National Cancer Institute's Process of Care Research and Science of Research and Technology Branches, is intended to facilitate discussion in the research community about priority SDM antecedent, process and outcome measures. Specifically, this project aims to identify measures related to shared decisions taking place in a clinical setting, involving patients and health care providers, and is limited to acute (one-time or very infrequent) decisions, as opposed to frequent or often recurring decisions.
GEM-SDM allows the research community to contribute their own SDM measures in the workspace and to provide feedback on the suggested measures. Measures added to the GEM-SDM workspace may include observational or self-reported measures examining the antecedents, process, quality, and outcomes of interactions between patient and medical providers (example: decision quality, prevalence of SDM in various clinical settings.)
The goal of this project is to build consensus around SDM measures for use in future studies, increase standardization of measurement, and promote data harmonization across studies. Increased use of standardized SDM measures will enable comparability across future studies and help the research community articulate research agendas in SDM.
Associated Constructs (Construct) - Terms that represent different concepts that are hypothesized (or known) to relate in useful ways and are therefore often measured together (e.g., “perceived benefits” and “perceived barriers”).
Construct Name (Construct) - The title by which the construct is known.
Definition of Construct (Construct) - Meaning of the construct.
Keywords (Construct) - Words or phrases that will assist with the search for a construct, measure, or dataset.
Similar Constructs (Construct) - Related terms that represent over-lapping concepts. They overlap to such an extent that rarely would both be measured (e.g., “perceived benefits” and “pros of change”).
Synonyms for Construct (Construct) - Other terms sometimes used to represent the same construct (e.g., “perceived susceptibility” and “perceived threat”).
Theoretical Foundation (Construct) - The social, psychological, or behavioral theory underlying the construct.
Availability (Datasets) - The level of availability of the dataset Date record added/updated in GEM.
caGrid service URL (Datasets) - World Wide Web location of the caBIG data service that provides access to the grid-enabled dataset.
Collection Period Start (Datasets) - The date data collection began.
Contact Address line 1 (Datasets) - The first part of the business address of the contact person for the dataset.
Contact Address line 2 (Datasets) - The second part of the business address of the contact person for the dataset.
Contact Affiliation (Datasets) - The organization of the contact person for the dataset.
Contact City (Datasets) - The city in which the contact person for the dataset works.
Contact Country (Datasets) - The country in which the contact person for the dataset works.
Contact Degree (Datasets) - The highest degree awarded to the contact person.
Contact E-mail (Datasets) - The e-mail address of the contact person for the dataset.
Contact First Name (Datasets) - The first name of the contact person for the dataset.
Contact Last Name (Datasets) - The surname of the contact person for the dataset.
Contact Phone (Datasets) - The phone number of the contact person for the dataset.
Contact State (Datasets) - The state in which contact person for the dataset works.
Contact Zip (Datasets) - The zip code in which the contact person for the dataset works.
Data Collection Mode(s) (Datasets) - A specific description of the administration method used to collect the data in the dataset.
Data Dictionary (Datasets) - Link to the data dictionary.
Data model URL (Datasets) - World Wide Web location of the UML model for the dataset. This will typically be stored at gforge.nci.nih.gov.
Data usage agreement and security documents (Datasets) - These documents facilitate appropriate data sharing between and among organizations by addressing legal, regulatory, policy, proprietary, and contractual barriers to data exchange.
Dataset Name (Datasets) - The title of the dataset.
Description (Datasets) - Text description of important information concerning the dataset (e.g., purpose, contents, funding).
Grid-enabled status (Datasets) - Datasets are considered grid-enabled when the documentation and programming related to the data service have addressed the compatibility guidelines established for caBIG so that that dataset will be syntactically and semantically interoperable with other data presented via caBIG data services. These compatibility guidelines include development of a UML (unified modeling language) model that describes the relationships between the common data elements in a domain and curation of the model to ensure that shared vocabularies and standard values and formats have been used to define how data are collected.
Keywords (Datasets) - Words or phrases that will assist with the search for a construct, measure, or dataset.
Number of Observations (Datasets) - Number of analysis units contained in the dataset.
Organizational Home (Datasets) - Institutional owner or holder of the dataset and all associated documentation.
Population (Datasets) - Types of subjects included in the dataset.
Preview CQL Statement (Datasets) - This statement, written in caGrid Query Language (CQL), queries the caBIG data service where the dataset of interest is located and returns a brief preview of the data.
Associated Constructs (Measure) - Terms that represent different concepts that are hypothesized (or known) to relate in useful ways and are therefore often measured together (e.g., 'perceived benefits' and 'perceived barriers').
Author Contact Information (Measure) - The correspondence information for the developer or owner of the instrument.
Brief description (Measure) - A brief description of the measure and its purpose.
Construct (Measure) - Constructs are concepts developed or adopted for use in a particular theory.
Data Sharing Capability (Measure) - The availability of, or access to data based on the use of the instrument.
Keywords (Measure) - Words or phrases that will assist with the search for a construct, measure, or dataset.
Language (Measure) - The language in which the measure is written.
Measure Name (Measure) - The title by which the instrument is known.
Measure Type (Measure) - The method by which the data are obtained.
Measurement Development (Measure) - Changes to original measure; different iterations.
Mode of Administration (Measure) - A specific description of the administration of a measure.
Number of Items (Measure) - Number of items in the measure.
Primary Content Area (Measure) - The field of research for which this measure is most theoretically relevant.
Psychometric Properties (Measure) - The psychometric aspects of the measure including validity and reliability.
Public Availability (Measure) - The availability of the measure in the public domain.
Reliability (Measure) - The ability of the measure to assess a quality or property consistently.
Response Category Format (Measure) - The type of response options available for responding to any item. [For example, Likert Scale, visual-analogue, dichotomous, open ended.]
Scoring Method (Measure) - The specification of how items are combined to create a final score or set of scores.
Secondary Content Area (Measure) - A field of research for which this measure is also theoretically relevant.
Target population (Measure) - The individuals or group for which the measure is intended.
Validity (Measure) - The degree to which the measure accurately assesses or reflects what it purports to measure.
Version Date (Measure) - The year that the measure was released for use.