Although vital status may not be in the PCORI CDM we have an integral data item 
for patient dimension in i2b2.  We are loading it from our mortality reports in 
Epic but would also be willing to bear modest expense to obtain the social 
security death data
Jim

James R. Campbell MD
[email protected]<mailto:[email protected]>
Office: 402-559-7505
Secretary: 402-559-7299
Pager: 402-888-1230

On Dec 15, 2014, at 5:19 PM, "Bos, Angela" 
<[email protected]<mailto:[email protected]>> wrote:

We at San Antonio would be interested in sharing. We have a process similar to 
what Philip described where our EMR and tumor registry teams report deaths to 
each other on a monthly basis, but the systems are never truly in sync. Updates 
on each side are from various sources and not done on a regular basis. We would 
greatly benefit from a more authoritative source for this information.

----
Angela Bos
Clinical Informatics Research Division
Department of Epidemiology and Biostatistics
UT Health Science Center at San Antonio
Phone: (210) 562-4074

From: 
[email protected]<mailto:[email protected]> 
[mailto:[email protected]] On Behalf Of Russ Waitman
Sent: Monday, December 15, 2014 3:37 PM
To: 'Phillip Reeder'; Tamara McMahon; Dan Connolly
Cc: Steve Fennel; [email protected]<mailto:[email protected]>
Subject: RE: vital status from EMR for breast cancer cohort characterization 
(#67, #32, #204)

We might think about whether we at KUMC might sign the paperwork with NIST so 
we can distribute our SSA files to other GPC partners as part of our existing 
agreement.
http://www.ntis.gov/products/ssa-dmf/#<http://www.ntis.gov/products/ssa-dmf/>

There used to be a signification $5000+ charge associated with acting as a 
distributor but it seems since the changes in the interim rule
http://www.gpo.gov/fdsys/pkg/FR-2014-03-26/pdf/2014-06701.pdf
, that may be gone.
http://www.ntis.gov/assets/pdf/ssdmf-raw%20data%20form.pdf

We want to check though that we are complying with the proper protocols with 
use of the file. Clearly enhancing trial recruitment and research for PCORI 
should be in scope.

Do we think enough places would want to use our feed?

Russ

From: 
[email protected]<mailto:[email protected]> 
[mailto:[email protected]] On Behalf Of Phillip Reeder
Sent: Monday, December 15, 2014 1:57 PM
To: Tamara McMahon; Dan Connolly
Cc: [email protected]<mailto:[email protected]>
Subject: Re: vital status from EMR for breast cancer cohort characterization 
(#67, #32, #204)

I would definitely check the EMR vital status in addition to the tumor registry 
vital status.  If you have both loaded into i2b2,  it’s very easy to do a query 
to find how many patients are alive in one source, but deceased in the other.  
For our tumor registry,  I typically run that report every few months and send 
it to the tumor registry group so they can update their database.  Since both 
data sources(Tumor Registry and EMR) get death information from different 
sources, they will always have some variation.

Phillip


From: Tamara McMahon <[email protected]<mailto:[email protected]>>
Date: Monday, December 15, 2014 at 1:44 PM
To: Dan Connolly <[email protected]<mailto:[email protected]>>
Cc: "[email protected]<mailto:[email protected]>" 
<[email protected]<mailto:[email protected]>>
Subject: RE: vital status from EMR for breast cancer cohort characterization 
(#67, #32, #204)

Dan,

For HERON, I plan to use Deceased and Deceased per SSA.  Vital status, 
especially deceased, is needed for the BC survey so it can be excluded from the 
survey population.  Nobody wants to send/receive a survey to a deceased 
patient.  I am not sure about the ALS and Obesity surveys, but I am guessing 
they will want to exclude deceased from their searches as well.

Tamara

From: Dan Connolly
Sent: Monday, December 15, 2014 11:36 AM
To: Tamara McMahon
Cc: [email protected]<mailto:[email protected]>
Subject: vital status from EMR for breast cancer cohort characterization (#67, 
#32, #204)

Tamara, have you picked out a term for vital status from the EMR for #204?

I hear that the breast cancer survey work might want to use not just tumor 
registry data but also vital status from the EMR.

So I went to check on the status of this data element in GPC, and I suppose it 
falls into the demographics issue 
(#67<https://informatics.gpcnetwork.org/trac/Project/ticket/67>) though I'm not 
sure whether that's been explicit yet; the focus has been:


  *   Demographics

     *   Age
     *   Gender
     *   Race
     *   Ethnicity
Then I looked to see where it is in the PCORNet CDM, and I found... it's not. 
There's no vital status nor date of death. The closest I found is "Discharged 
alive" vs "Expired" in ENCOUNTER.DISCHARGE_STATUS.

--
Dan


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