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Introduction to Data Sharing with ICPSR & ADDEP

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Notes

Recorded at the AOTA 2016 Pre-Conference Institute on Large Data and Data Sharing Research on April 6th, 2016. George Alter, PhD, and colleagues offered a pre-conference institute co-sponsored by The American Occupational Therapy Foundation (AOTF) and American Occupational Therapy Association (AOTA) at AOTA's national conference.

This institute provided an overview of research studies conducted using Medicare claims and other large datasets in the context of post-acute care settings (inpatient rehabilitation facility, skilled nursing facility, and home health agency). Topics include the availability of large datasets for disability, rehabilitation, and occupational therapy research and new federal initiative related to data sharing.

Learning Module Notes Modules

  1. Introduction (0:00 - 7:43)
    • Evolution of Data Sharing
    • Research: Do researchers actually share their data?
    • Complaints: No time or money to archive, intentionally discarded data, lost
    • Science is being changed: Prevent fraud, mistake, publication bias • Data sharing supports the legitimacy of research – an NIH requirement for 10+ yrs
    • FAIR Movement: Findable, Accessible, Interoperable, Reusable
  2. Example: “The Bad Old Days” (7:43 – 10:56)      
    • A Case of Data Rescue: Cornell Study of Occupational Retirement
    • Recovered data, useable after 50 yrs! … 10x more expensive.
  3. Who Are We? ICPSR. (10:56 – 13:44)
    • Founded 1962
    • 85,000 data archives
    • ADDEP: Newest topical archive at ICPSR
    • CLDR: Archiving data
    • Pilot Funding for Data Archiving
  4. Step 1. Depositing Data: Data Preparation (13:44 – 23:26)      
    • How to organize study from the beginning (i.e. informed consent)
    • Info on Depositing, upload data into the system
    • ICPSR Curation Services: HIPPA, deductive/indirect disclosure, code checks, codebook, study description
    • Data Release Options: Public Use, Restricted-Use, and Delayed dissemination
    • Sharing Confidential Data: Virtual Data Enclave (VDE)
    • Summer program in quantitative methods of social research
  5. Finding Rehab Data: User Point of View (23:26 – 26:31)      
    • Study Search
    • Variable search
    • Variable Relevance search
  6. How is this possible? Data Documentation Initiative (26:31 – 30:51)      
    • Machine read codes with DDI
    • Bibliography – search publications and find associated data sets • Study Home Page: Download data & citation & reports (stats on how frequently data has been downloaded)
  7. Another Benefit of Sharing Data? More publications! (30:51 – 32:06)      
    • Secondary usage of data, more publications, encourage collaboration
  8. Closing Remarks (32:06 – 32:51) 
  9. Q&A  (32:51 – 41:51)