[Rdap] Curating Restricted Use/Sensitive Research Data at Your Institution

[Hannah Calkins]

Hi Jen,

At Children's Hospital of Philadelphia we are curating and archiving
research data that falls under a number of restricted use / sensitive
umbrellas including PHI, mental health & substance use records, and study
specific restrictions coming from consent & protocol documentation.  For
access, we utilize an environment similar to the one you described (no
direct download) although that process is still in development. We have
built (are building - ongoing) our own system to manage both the archival
process and the access systems.  We primarily work within the second
service model you described, because our goal is (internal) sharing if and
when appropriate, but there are some cases where we may provide services
more akin to the first model you described.  We do not currently provide
any type of public access.  I would be happy to talk with you or someone
from your team about what we've set up so far, how its working, etc. if
that sounds useful!

Hannah Calkins

Metadata Librarian
Children's Hospital of Philadelphia
calkinsh at email.chop.edu

On Tue, Oct 8, 2019 at 10:06 AM Jen Darragh <jennifer.darragh at duke.edu>
wrote:

> Hi Folks,
>
>
>
> (apologies if you saw this on DataCure already)
>
>
>
> I'm currently helming a team at the Duke University Libraries conducting a
> feasibility study on whether we should engage in curating and archiving
> primary restricted-use/sensitive data in our repository.  I should note
> that we are looking at data that would require deeper access restrictions
> than something most out-of-the-box solutions would afford – as in, would
> likely need to be accessed in a virtual enclave environment (no direct
> download). We are looking at three different service models:
>
>
>
> Dark archiving: Metadata record and dark storage, only the original
> depositor or other authorized person can access when necessary.
>
> Duke Access: Metadata record and preservation storage with request
> workflow and partnership on campus to deliver data access to authorized
> Duke individuals.
>
> "Public Access": Metadata record and preservation storage with request
> workflow and partnerships to deliver data access to any authorized
> individual.
>
>
>
> Are any of you currently engaged in providing restricted-use, data
> archiving support?  If you are, would you be willing to chat with a member
> of my team to talk about why you set it up, how it's working, FTE,
> resources, etc.?
>
>
>
> Thanks in advance!
>
>
>
> Jen
>
>
>
>
>
> *Jennifer Darragh*
> Pronouns: She/her/hers
>
> Senior Research Data Management Consultant
> Center for Data and Visualization Sciences
> Duke University Libraries
>
> Perkins Library
> PO Box 104732
> Durham, NC 27708
> 919-681-1805
> jennifer.darragh at duke.edu
>
>
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