The latter - general consent was revoked after they were properly consented to the specific study.
As for the ability to include these patients, I'm still not sure the appropriate (or best) way to do it. We should be able to manually extract their data from our warehouse and do our best to provide it in the desired format but I don't think thats a sustainable model. 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 9:05 AM, McDowell, Bradley D < bradley-mcdow...@uiowa.edu> wrote: > So is it the case that these patients should never have been offered the > opportunity to participate in the questionnaire or provide access to their > medical records? Or (it seems more likely), did the patient revoke their > implied general consent after being properly consented to our specific > study? > > If the latter, it seems that the specific opt-in consent to participate in > the breast cancer survey project (with option to provide med records) would > override the general opt-out. With that in mind, I think we would > definitely want to maintain the ability to include these patients in the > survey dataset. Do we even have that ability, though? > > Brad > > -----Original Message----- > From: Dan Connolly [mailto:dconno...@kumc.edu] > Sent: Monday, June 27, 2016 8:36 AM > To: Chrischilles, Elizabeth A; gpc-dev@listserv.kumc.edu; McDowell, > Bradley D > Subject: RE: [gpc-informatics] #513: ~3% missing breast-cancer diagnosis > data due to opt-out at UMN > > 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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