Yes, well the idea is pretty lame ☺ I’m glad you know what I’m talking about. Have you guys implemented this for a particular patient cohort?
James McClay, MS, MD, FACEP Associate Professor, Emergency Medicine Chair, Biomedical Informatics Graduate Program University of Nebraska Medical Center 402-559-3587, jmcc...@unmc.edu _______________________________ The information in this e-mail is privileged and confidential, intended only for the use of the addressee(s) above. If you have received this e-mail by mistake, please delete it and immediately contact the sender. From: Dan Connolly [mailto:dconno...@kumc.edu] Sent: Friday, October 17, 2014 3:09 PM To: McClay, James C; gpc-dev@listserv.kumc.edu Subject: RE: General questions about registries It's sufficiently obvious that our paper was rejected for insufficient novelty. ;-) But that's exactly what the HERON i2b2/REDCap stuff is all about. Here's ticket comment from April about SIENE<https://informatics.gpcnetwork.org/trac/Project/ticket/87#comment:16> again: We wrote up a manuscript a while back. The submission was declined, but we've had enough interest that we've decided to just share it. We're in the process of adding it to KUMC's digital archive<http://archie.kumc.edu/>; meanwhile, I've attached it to this ticket in editable (MS Word) format<https://informatics.gpcnetwork.org/trac/Project/attachment/ticket/87/Adagarla2014-Joint-Summits-submissionRusscomments8.docx><https://informatics.gpcnetwork.org/trac/Project/raw-attachment/ticket/87/Adagarla2014-Joint-Summits-submissionRusscomments8.docx> and fixed (PDF) format<https://informatics.gpcnetwork.org/trac/Project/attachment/ticket/87/1861442_File000002.pdf><https://informatics.gpcnetwork.org/trac/Project/raw-attachment/ticket/87/1861442_File000002.pdf>. * SEINE: Methods for Electronic Data Capture and Integrated Data Repository Synthesis with Patient Registry Use Cases Bhargav Adagarla1, Daniel W. Connolly1, Tamara M. McMahon1, Manikandan Nair1, Lisa D. VanHoose3, Priyanka Sharma2, Linda J. D’Silva3, Lemuel R. Waitman1 1Division of Medical Informatics, 2Department of Internal Medicine, 3Physical Therapy and Rehabilitation Science, University of Kansas Medical Center, Kansas City, KS Abstract Integrated Data Repositories (IDR) allow clinical research to leverage electronic health records (EHR) and other data sources while Electronic Data Capture (EDC) applications often support manually maintained patient registries. Using i2b2 and REDCap, (IDR and EDC platforms respectively) we have developed methods that integrate IDR and EDC strengths supporting: 1) data delivery from the IDR as ready-to-use registries to exploit the annotation and data collection capabilities unique to EDC applications; 2) integrating EDC managed registries into data repositories allows investigators to use hypothesis generation and cohort discovery methods. This round-trip integration can lower lag between cohort discovery and establishing a registry. Investigators can also periodically augment their registry cohort as the IDR is enriched with additional data elements, data sources, and patients. We describe our open-source automated methods and provide three example registry uses cases for these methods: triple negative breast cancer, vertiginous syndrome, cancer distress. -- Dan ________________________________ From: gpc-dev-boun...@listserv.kumc.edu<mailto:gpc-dev-boun...@listserv.kumc.edu> [gpc-dev-boun...@listserv.kumc.edu] on behalf of McClay, James C [jmcc...@unmc.edu] Sent: Friday, October 17, 2014 2:58 PM To: gpc-dev@listserv.kumc.edu<mailto:gpc-dev@listserv.kumc.edu> Subject: General questions about registries GPC informatics experts: I have a number of investigators requesting the ability to have registry type functionality from our i2b2 environment. I will use COPD for an example but we need a generalizable solution available to any investigative team. They would like to tag patients participating in their registry (for example consented COPD patients), capture some patient reported outcomes (perhaps quality of life), and then enter additional information that either isn’t in the EHR or isn’t in coded form (i.e. specific measurements from the Chest CT in COPD patients.) Russ, I know the Heron network keeps track of patients who have consented to participate in general but this would be for specific patients who have consented to participate and are followed by a clinic. My thought is to add a flag in i2b2 that would ID these patients, capture PRO through REDCap, provide a mechanism in REDCap to display reports such as Echo or CT, provide the investigator a form for capturing structured data and then link that back to i2b2. I know we have discussed NLP but I still don’t think it reliable enough for this setting. My question: is the patently obvious how to do this or do we need to do some development? Jim James McClay, MS, MD, FACEP Associate Professor, Emergency Medicine Chair, Biomedical Informatics Graduate Program University of Nebraska Medical Center 402-559-3587, jmcc...@unmc.edu<mailto:jmcc...@unmc.edu> _______________________________ The information in this e-mail is privileged and confidential, intended only for the use of the addressee(s) above. If you have received this e-mail by mistake, please delete it and immediately contact the sender. The information in this e-mail may be privileged and confidential, intended only for the use of the addressee(s) above. Any unauthorized use or disclosure of this information is prohibited. If you have received this e-mail by mistake, please delete it and immediately contact the sender.
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