Providing access to restricted data in our institutions SARAH PICKLE April 23, 2015
RDAP 15: Providing access to restricted data in our institutions
Jul 16, 2015
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Providing access to restricted
data in our institutions SARAH PICKLE
April 23, 2015
Cover art for Fienberg, et al., Sharing Research Data (Washington, D.C.:
National Academy Press, 1985).
2015
we have a lot of data that are
restricted.
we have a lot of data that are
restricted.
[how] can we share them?
we have a lot of data that are
restricted.
[how] can we share them?
A framework for documenting
restricted data
Whom do we need to talk to?
Whom do we need to talk to?
Whom do we need to talk to?
Whom do we need to talk to?
Whom do we need to talk to?
Whom do we need to talk to?
Whom do we need to talk to?
What do we need to keep in mind?
What do we need to keep in mind?
Ethical treatment of human subjects and approvals for data use
agreements
What do we need to keep in mind?
Ethical treatment of human subjects and approvals for data use
agreements
Secure technology for data transport, storage, access, and use
What do we need to keep in mind?
Ethical treatment of human subjects and approvals for data use
agreements
Secure technology for data transport, storage, access, and use
Efficient use of data in secure environment
What do we need to keep in mind?
Ethical treatment of human subjects and approvals for data use
agreements
Secure technology for data transport, storage, access, and use
Efficient use of data in secure environment
Greater good of sharing data
Preliminary recommendations
Preliminary recommendations
Ethical treatment of human subjects and approvals for data use agreements
disclosure risks • risky links • informed consent language • cultural context
Preliminary recommendations
Ethical treatment of human subjects and approvals for data use agreements
disclosure risks • risky links • informed consent language • cultural context
Secure technology for data transport, storage, access, and use
IT specs • data use agreement
Preliminary recommendations
Ethical treatment of human subjects and approvals for data use agreements
disclosure risks • risky links • informed consent language • cultural context
Secure technology for data transport, storage, access, and use
IT specs • data use agreement
Efficient use of data in secure environment
(specific!) deidentification activities
Preliminary recommendations
Ethical treatment of human subjects and approvals for data use agreements
disclosure risks • risky links • informed consent language • cultural context
Secure technology for data transport, storage, access, and use
IT specs • data use agreement
Efficient use of data in secure environment
(specific!) deidentification activities
Greater good of sharing data
pre-written appeal to IRB
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