From: Jeffrey R Curtis [mailto:[email protected]] Sent: Monday, March 24, 2014 9:05 PM To: Jenny Ibarra; Lesley Curtis; '[email protected]'; 'Brie Purcell; Shelley Rusincovitch; 'Rachael Fleurence; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; Maryan Zirkle; Dr Ed Hammond, Ph.D.; Shanbhag, Avinash (HHS/ONC; JV Selby; Joanne Cochrane; [email protected]; Travis Crayton; Bauck, Alan; Durham, Mary, Ph.D.; Blake, Michelle A; Laws, Reesa; Day, Michele; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; Dorie Olson; Hripcsak, George M.; [email protected]; [email protected]; Borromeo, Charles; Beller, Marc; [email protected]; Dori Bilik; Goel, Satyender (NU; [email protected]; [email protected]; [email protected]; Wehbe, Firas; [email protected]; [email protected]; Richard Platt <[email protected]> ([email protected]); [email protected]; '[email protected]'; Robert Califf, M.D. Cc: [email protected]; Rothman, Russell ([email protected]); [email protected]; Russ Waitman; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; Jeffrey R Curtis; [email protected]; Laura Schanberg, M.D.; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected]; [email protected] Subject: RE: PCORnet: Draft Common Data Model 1.0
Several thoughts: 1) Is there any convention in use by data partners that might require masking full DOB for patients age >= 90, given Safe Harbor rules for older individuals? 2) The patient ID isn't supposed to mean anything. However, i am hopeful that there will come a day when a patient, with consent, will be linkable ACROSS CDRNs/PPRNs. In that event, it seems likely that there would need to be some mechanism to optionally generate an encrypted patient ID, and also to know how an encrypted ID was generated (much as the PX_CODETYPE field specifies which coding system is being used for the corresponding PX variable). Should we add two or more extra text fields at this stage to allow for this capability? As it is, it does not feel very patient centric to me to set up a CDM that precludes willing patients to be able to do this 3) As a point of clarification, i think that the enrollment table needs stronger warnings that to represent a patient as truly enrolled, the data partner needs to be quite certain that they can represent complete capture of all healthcare utilization for the individual. While the nomenclature is obviously borrowed from Mini-Sentinel where health plans can generally feel comfortable that this is true, it feels like the default condition for most health systems is that they CANNOT represent this unless they also have access to health plan / insurance data. So my expectation is that this table will mostly be blank for most patients for most CDRNs and probably all PPRNs where there is access to health system (but not health plan) data. 4) I agree with the prior comment that the CHART field seems better represented at the Encounter level (and in the Encounter table) than in an enrollment table. 5) The ENCTYPE description requests that data partners 'unbundle' an ED visit from an inpatient hospitalization encounter. In some data, like Medicare, these get bundled. Is this optional, or a requirement? Also, there is a description, "Includes ED encounters that become inpatient stays", ; I suggest to make explicit that it includes ED visits that don't lead to inpatient stays too. Also, is this the appropriate encounter type for a patient who was admitted to a 24 hour observation unit? Might mention that. 6) I want to put a vote in for adding an optional field to the Encounter table that consists of unstructured data (free text) of the clinical note that has been scrubbed of PHI. 7) Is there a strong reason to mask the Provider ID? Why not use NPI? I would think that there should be much less sensitivity around this, give that it's publically available https://npiregistry.cms.hhs.gov/NPPESRegistry/NPIRegistryHome.do 8) Similarly, is there any possibility to add hospital ID using any recognized taxonomy, such as the American Hospital Association ID? This could be quite useful http://www.hcup-us.ahrq.gov/db/state/ahalinkage/aha_linkage.jsp Jeffrey Curtis, MD MS MPH University of Alabama at Birmingham, Division of Clinical Immunology and Rheumatology William J. Koopman Endowed Professor in Rheumatology and Immunology Director, UAB Arthritis Clinical Intervention Program Co-Director, UABCenter for Education and Research on Therapeutics (CERTS) Co-Director, UAB PharmacoEpidemiology and Economic Research (PEER) Group 510 20th Street South FOT 802D Birmingham AL 35294 205-975-2176 [email protected]<mailto:[email protected]> From: Jenny Ibarra [mailto:[email protected]] Sent: Wednesday, March 19, 2014 9:05 AM To: Lesley Curtis; '[email protected]'; 'Brie Purcell; Shelley Rusincovitch; 'Rachael Fleurence; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; '[email protected]'; Maryan Zirkle; Dr Ed Hammond, Ph.D.; Shanbhag, Avinash (HHS/ONC; Jeffrey R Curtis; JV Selby; Joanne Cochrane; [email protected]<mailto:[email protected]>; Travis Crayton; Bauck, Alan; Durham, Mary, Ph.D.; Blake, Michelle A; Laws, Reesa; Day, Michele; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; Dorie Olson; Hripcsak, George M.; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; Borromeo, Charles; Beller, Marc; [email protected]<mailto:[email protected]>; Dori Bilik; Goel, Satyender (NU; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; Wehbe, Firas; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; Richard Platt <[email protected]<mailto:[email protected]>> ([email protected]<mailto:[email protected]>); [email protected]<mailto:[email protected]>; '[email protected]'; Robert Califf, M.D. Cc: [email protected]<mailto:[email protected]>; Rothman, Russell ([email protected]<mailto:[email protected]>); [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; Laura Schanberg, M.D.; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]>; [email protected]<mailto:[email protected]> Subject: PCORnet: Draft Common Data Model 1.0 Dear PCORnet Colleagues, We are pleased to distribute the attached draft of the initial PCORnet Common Data Model for your review and welcome your comments and feedback. As you may know, we have a very tight timeline to finalize the PCORnet CDM Version 1.0 (March 31) so we kindly ask that you collate your Network's feedback and submit it to [email protected]<mailto:[email protected]> by close of business, Tuesday, March 25th. We recognize that this will be an iterative process once partners begin to implement the model. We plan to use the DSSNI TF calls and one-on-one calls to discuss implementation details and gather and communicate lessons learned. We look forward to working with you on this process. Kind regards, Jenny Jenny Ibarra, RN, MSN Project Leader, Clinical Operations Duke Clinical Research Institute 2400 Pratt Street Durham, NC 27705 Phone: 919.236.3291 Email: [email protected]<mailto:[email protected]>
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