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CODE4LIB  March 2014

CODE4LIB March 2014

Subject:

Re: Confidentiality, User Experience Studies, IRBs

From:

Christine Mayo <[log in to unmask]>

Reply-To:

Code for Libraries <[log in to unmask]>

Date:

Thu, 20 Mar 2014 17:58:04 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (110 lines)

If you're interested in submitting to a repository (at your institution or
at a general data repository), I can offer a little bit of advice. I work
at the Dryad Digital Repository, which is a public, CC0 data repository. We
specialize in scientific data, so when we get human subject data, it's
usually from medical studies. Our rule of thumb for accepting data is "no
direct identifiers, no more than three indirect identifiers", indirect in
that case meaning things like age, gender, marital status, etc. We also
encourage authors with questions to look at
this<http://dx.doi.org/10.1136/bmj.c181>article in BMJ, which again,
applies to preparing clinical data for
publication, but still offers some pretty good guidelines for what you
should consider o.k. to make public.
I dunno if that helps with your specific case, but I think those rules are
pretty good ones to keep in mind for anybody considering making their data
publicly available.

Christine Mayo
Assistant Curator
Dryad Digital Repository


On Thu, Mar 20, 2014 at 4:53 PM, Hicks, William <[log in to unmask]>wrote:

> I should probably clarify a bit. Yes, Iąll code internet survey response
> data and observational into Study Code IDs, etc. Iąm sorta curious on the
> storage end of things, like keeping your data locked in cabinets, what (if
> anything) you note about storing data in your institutional
> repository/digital libraries, etc. I see lots of public spaces on peopleąs
> websites that link to their study results, but Iąm just a bit more curious
> about the administrative/organizational side of things. What do you łhave˛
> to do, and how are you complying?
>
> Like you Emily, Iąm not real concerned about ever using names after the
> fact.
>
> William Hicks
>
>
> Digital Libraries: User Interfaces
> University of North Texas
> 1155 Union Circle #305190
> Denton, TX 76203-5017
>
> email: [log in to unmask]  | phone: 940.891.6703 | fax: 940.369.8882 |
> web: http://www.library.unt.edu
>
>
>
>
> On 3/20/14, 3:22 PM, "emily mitchell" <[log in to unmask]> wrote:
>
> >William,
> >
> >I just went through IRB in January for the usability studies I'm doing
> >this
> >semester.  I couldn't think of any reason I would ever want to be able to
> >go back and associate names with results of usability studies, so I took
> >the simple route: I don't retain people's names anywhere other than on the
> >informed consent forms.
> >
> >When I was doing surveys, each set of answers got assigned a unique ID so
> >that I could keep track of which answers were from the same person.  That
> >ID is not associated with the person's name anywhere, and I also haven't
> >been collecting demographic information.
> >
> >This might be more simplistic than what you're going for, but it's working
> >out really well for me.
> >
> >Emily
> >
> >
> >Emily Mitchell
> >Librarian / Webmaster
> >214 Penfield Library
> >SUNY Oswego
> >Oswego, NY 13126
> >Phone: 315-312-3540
> >
> >
> >On Thu, Mar 20, 2014 at 4:05 PM, Hicks, William
> ><[log in to unmask]>wrote:
> >
> >> Anybody have advice on maintaing records related to usability studies,
> >> interviews, etc. with regards to records retention/IRB policies in your
> >> university settings?  I'm putting together an IRB application at my
> >> institution and am curious what any of you might have done for this
> >>sort of
> >> stuff. Particularly how you might have coded/anonymized and stored
> >>results
> >> from interviews to maintain confidentiality.
> >>
> >> I'll have the sort of standard informed consent, and a
> >> photographic/audio/video release form for an observational study you
> >>might
> >> expect, but I'd also like to put as much raw data into our data
> >>repository
> >> afterwards as I can too so there are a number of complicated things
> >>going
> >> on at once.
> >>
> >> Any thoughts would be appreciated
> >>
> >>
> >> William Hicks
> >>
> >> Digital Libraries: User Interfaces
> >>
> >> email: [log in to unmask]
> >>
>

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