<div dir="ltr">Hi Jen,<div><br></div><div>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!</div><div><br></div><div>Hannah Calkins</div><div><br></div><div>Metadata Librarian</div><div>Children's Hospital of Philadelphia</div><div><a href="mailto:calkinsh@email.chop.edu">calkinsh@email.chop.edu</a></div></div><br><div class="gmail_quote"><div dir="ltr" class="gmail_attr">On Tue, Oct 8, 2019 at 10:06 AM Jen Darragh <<a href="mailto:jennifer.darragh@duke.edu">jennifer.darragh@duke.edu</a>> wrote:<br></div><blockquote class="gmail_quote" style="margin:0px 0px 0px 0.8ex;border-left:1px solid rgb(204,204,204);padding-left:1ex">
<div lang="EN-US">
<div class="gmail-m_-4946521363442246664WordSection1">
<p class="MsoNormal">Hi Folks,<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">(apologies if you saw this on DataCure already)<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">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:<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">Dark archiving: Metadata record and dark storage, only the original depositor or other authorized person can access when necessary.<u></u><u></u></p>
<p class="MsoNormal">Duke Access: Metadata record and preservation storage with request workflow and partnership on campus to deliver data access to authorized Duke individuals.<u></u><u></u></p>
<p class="MsoNormal">"Public Access": Metadata record and preservation storage with request workflow and partnerships to deliver data access to any authorized individual. <u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">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.?<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">Thanks in advance!<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal">Jen<u></u><u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal"><u></u> <u></u></p>
<p class="MsoNormal" style="background:white"><b><span style="font-size:18pt;font-family:"Bradley Hand ITC";color:rgb(46,116,181)">Jennifer Darragh</span></b><span style="color:black"><br>
Pronouns: She/her/hers<u></u><u></u></span></p>
<p class="MsoNormal" style="background:white"><span style="color:black">Senior Research Data Management Consultant<br>
Center for Data and Visualization Sciences<br>
Duke University Libraries</span><span style="font-size:12pt;color:black"><u></u><u></u></span></p>
<p class="MsoNormal" style="background:white"><span style="color:black">Perkins Library<br>
PO Box 104732<br>
Durham, NC 27708<br>
919-681-1805<br>
<a href="mailto:jennifer.darragh@duke.edu" target="_blank"><span style="color:rgb(5,99,193)">jennifer.darragh@duke.edu</span></a> <u></u><u></u></span></p>
<p class="MsoNormal"><u></u> <u></u></p>
</div>
</div>
_______________________________________________<br>
RDAP mailing list<br>
<a href="mailto:RDAP@mail.kunverj.com" target="_blank">RDAP@mail.kunverj.com</a><br>
<a href="http://mail.kunverj.com/mailman/listinfo/rdap" rel="noreferrer" target="_blank">http://mail.kunverj.com/mailman/listinfo/rdap</a><br>
</blockquote></div>