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Considerations on barriers to data sharing

Considerations on barriers to data sharing. 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 Competing Interests

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Considerations on barriers to data sharing

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  1. Considerations on barriers to data sharing Elaine Collier, MD National Center for Research Resources National Institutes of Health

  2. Considerations on Barriers • Existence of Data • Data or Information Characteristics • Technical • Policy and Cultural Impacts • Competing Interests • Privacy and Confidentiality • Cost

  3. 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….

  4. 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 controls

  5. Semantics/Data quality • Durability • Annotation • Properties • Framework • Community needs or requirements • Shared Standards • Meaning • Content • Context • Temporal aspects • Granularity • Provenance or history • Language

  6. 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

  7. 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 agreement

  8. 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 itself

  9. Privacy and Security • Impact of sharing • Individual • Institution • Population • Country • World • Cultural • Raw, aggregate, identifiable, links, • Clinical care and clinical research data • Audience

  10. 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

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