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