Elaine Collier MD National Center for Research Resources National Institutes of Health Considerations on Barriers Existence of Data Data or Information Characteristics Technical Policy and Cultural Impacts ID: 468530
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Slide1
Considerations on barriers to data sharing
Elaine Collier, MD
National Center for Research Resources
National Institutes of HealthSlide2
Considerations on Barriers
Existence of Data
Data or Information Characteristics
Technical
Policy and Cultural Impacts
Competing Interests
Privacy and Confidentiality
CostSlide3
Existence of Data
Does the data or information exist?
Human or machine discoverable?
Requirements for discovery?
Characteristics of data discoverable?
Usability of data?
Access requirements for data?
Existence should be easily discoverable but…. Slide4
Data Characteristics
Semantics/Meaning of Data
Format or syntactic interoperability of data
Completeness – raw, aggregate, derived, selected
History of Data – provenance, curation
Links to other data?
Public or Private
Access controlsSlide5
Semantics/Data quality
Meaning
Content
Context
Temporal aspects
Granularity
Provenance or history
Language
Durability
Annotation
Properties
Framework
Community needs or requirements
Shared StandardsSlide6
Technical
Semantic and syntactic interoperability
Data formats and communication protocols
Availability – persistent?
Versioning?
Requirements for re-use, or re-purposing ?
Cleaning, derivation, documentation?
Repository or publisher of data
Linked to other data?
Preservation
Impact of technology changes Slide7
Policy and Cultural
Fear of misuse of data
Confidentiality or privacy concern
Legal considerations
Intellectual Property
Resources for sharing data
Resources for accessing data
Approval process?
Costs – technical, policy agreementSlide8
Competing interests
Researcher or collector
Institution or company
National competition or cooperation
Public versus private
Fame or Money?
Public Good versus Private Good?
Compete on use not data itselfSlide9
Privacy and Security
Impact of sharing
Individual
Institution
Population
Country
World
Cultural
Raw, aggregate, identifiable, links,
Clinical care and clinical research data
AudienceSlide10
Cost
Whose cost?
Cost versus value?
Open or closed market?
Cultural and policy issues related to cost
Technical costs
Impact on usability and availability data