Thanks Dan. Our i2b2 and CDM are only loaded with patients who have NOT explicitly opted-out of having their data available for general research purposes as part of the consent process within the healthcare system. When we ran the initial breast-cancer cohort query, all of the patients that met the criteria had not opted-out. Since then, 3 of those patients have opted-out, or indicated they do not want their data to be available for general research purposes. So this means we no longer include them in i2b2 or our CDM builds/loads. However, since they have consented specifically for the breast cancer study and as I understand the rules, their data can still be used for that study. Since these patients still exist within our data warehouse, we need to figure out how to make their data available through some type of consent flag within i2b2/CDM (which may be problematic if our changes do not conform to the standard) or some other type of generally accepted approach.
Regards, Justin Dale Manager - Research Development and Support University of Minnesota Academic Health Center - Office of Information Systems Phone: 612.624.9747 Fax: 612.624.7458 jd...@umn.edu On Mon, Jun 27, 2016 at 8:35 AM, Dan Connolly <dconno...@kumc.edu> wrote: > The description says: "The missing 3 were excluded from our CDM build > because they have since opted-out of having their data available for > general research purposes." > > Is that clear enough? > > -- > Dan > > ________________________________________ > From: Chrischilles, Elizabeth A [e-chrischil...@uiowa.edu] > Sent: Saturday, June 25, 2016 9:33 AM > To: gpc-dev@listserv.kumc.edu; Dan Connolly; McDowell, Bradley D > Subject: RE: [gpc-informatics] #513: ~3% missing breast-cancer diagnosis > data due to opt-out at UMN > > I'd like to understand the reasons for this. Is it because these > consented patients were unable to be linked for some reason or is there > some governance reason or something else. Thanks > > -----Original Message----- > From: GPC Informatics [mailto:d...@madmode.com] > Sent: Friday, June 24, 2016 5:49 PM > To: dconno...@kumc.edu; McDowell, Bradley D > Cc: Chrischilles, Elizabeth A > Subject: Re: [gpc-informatics] #513: ~3% missing breast-cancer diagnosis > data due to opt-out at UMN > > #513: ~3% missing breast-cancer diagnosis data due to opt-out at UMN > --------------------------+---------------------------- > Reporter: dconnolly | Owner: brad_mcdowell > Type: problem | Status: assigned > Priority: major | Milestone: bc-dx-px > Component: data-sharing | Resolution: > Keywords: | Blocked By: > Blocking: 448 | > --------------------------+---------------------------- > Changes (by dconnolly): > > * owner: jdale => brad_mcdowell > * status: new => assigned > > > Comment: > > Brad, what would be the impact if UMN didn't manage to share diagnoses > and procedures for 3 of their 98 consented patients? > > -- > Ticket URL: < > http://informatics.gpcnetwork.org/trac/Project/ticket/513#comment:1> > gpc-informatics <http://informatics.gpcnetwork.org/> > Greater Plains Network - Informatics > _______________________________________________ > Gpc-dev mailing list > Gpc-dev@listserv.kumc.edu > http://listserv.kumc.edu/mailman/listinfo/gpc-dev >
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