Isn't that part of break off from GPC leadership??  What I dropped from each 
'talking point' slide was content about volunteers could opt to be on any other 
committee they wanted as well.

From: Russ Waitman
Sent: Monday, September 15, 2014 3:54 PM
To: Lauren Aaronson
Cc: gpc-engagement ([email protected]); Steve Fennel
Subject: Re: Draft 6 mo report

What happened to patient involvement in data sharing governance?

Russ

On Sep 15, 2014, at 11:52 AM, Lauren Aaronson 
<[email protected]<mailto:[email protected]>> wrote:


All,

This Thursday is a webinar mtg for Russ Waitman, our overall PI, to provide 
PCORI with a 6 month progress report.  For this we were asked to provide 2 or 3 
slides to show a response to question #9 of the 6 month progress report:

9. Describe how patients and other stakeholders are or will be involved in 
design, implementation, and dissemination of research conducted by or in 
collaboration with your CDRN. Describe critical areas in which stakeholder 
input will be sought to influence the trajectory of the research.

Attached is a DRAFT set of slides with the info we are sending to Russ.  ONLY 
the first 3 slides are for him to use as official slides; the remaining slides 
are just to provide him with some talking points.  Kim Kimminau will be on the 
call as well to help Russ out if needed.  I will be at some mtgs in DC so 
likely unable to join this call on Thurs.  Because Russ needs to provide PCORI 
with his full slide set by Weds, we don't have a lot of time, but WELCOME any 
and all comments and suggestions you have on what we have drafted.  Just get 
them to us ASAP.

I've also attached here the full CDRN 6 Month Evaluation Interview Guide in 
case you are interested in the other questions Russ must address for the entire 
GPC.

Of course, you also may interpret some of the content from these slides as 
direction to start recruiting the patient and patient advocate representatives 
from your site....we will need to have actual action on this for the next 
progress report.

Lauren

Lauren S Aaronson, PhD, RN, FAAN
Deputy Director
Frontiers:  The Heartland Institute for Clinical and
      Translational Research
KU Clinical Research Center  MS # 6001
4350 Shawnee Mission Parkway
Fairway, KS  66205
913-945-7681
[email protected]<mailto:[email protected]>

Professor
School of Nursing and Dept of Health
   Services & Management, School of Medicine
KUMC   MS # 4043
3901 Rainbow Blvd
Kansas City, KS  66160
913-588-1789


<CDRN 6 Month Evaluation_Interview Guide 08012014.pdf><6 month Patient and 
Stakeholder Engagement in the GPC.pptx>

Russ Waitman, PhD
Director of Medical Informatics
Assistant Vice Chancellor for Enterprise Analytics
Associate Professor, Department of Internal Medicine
University of Kansas Medical Center, Kansas City, Kansas
913-945-7087 (office)
[email protected]<mailto:[email protected]>
http://www.kumc.edu/ea-mi/
http://informatics.kumc.edu<http://informatics.kumc.edu/>
http://informatics.gpcnetwork.org - a PCORNet collaborative



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