Kieran, I don't recall how many patients can be invited but I met with an ALS patient last week who has an interest in the data collection process. May I add him to the invite list?
David Walk Univ Minnesota On Thu, Jul 3, 2014 at 5:52 PM, Kieran Pemberton <[email protected]> wrote: > Good Afternoon again! > > > > There will be a Greater Plains Collaborative combined Informatics/Patient > Engagement meeting in Kansas City on Sunday August 17th and Monday August > 18th. The meeting is titled the Learning Engagement Kick-Off (LEK). > > > > The session on Sunday is for a small sub-set of all LEK participants, as > the focus on Sunday is: “Educate patients and patient advocates on PCORI, > GPC, clinical effectiveness research, and data sharing.” We anticipate that > attendees on Sunday will be patient engagement leads from each site, > patients/patient advocates from each site, the cohort leads, and a few > PCORI representatives. The agenda for Sunday is being finalized and will be > released when complete. On Sunday, we expect a session from about 1:00 – > 5:00. We will also hold a social event on Sunday evening for everyone that > is able to attend. > > > > On Monday the 18th, there will be an all-day session. The Goals for the > Day will be further definition of: > > > > • Cohorts: characterization plans and survey/PROs for our 3 > topics > > • Methods: supporting cohorts; reconciling Mini-Sentinel model > > • Data Sharing > > • Integrating CER into the Patient Experience/Clinical Workflow > > • Small SWAT team: phase 2 proposal development on the three > patient cohorts – ALS, breast cancer and obesity. > > > > If you can come to Kansas City for Monday the 18th, please let me know. > > > > Your site would cover your travel costs. Contact your Site PI for more > information (site PI list copied below). > > > > Children’s Mercy Hospital - Laura Fitzmaurice, MD > > University of Iowa Healthcare - Gary E. Rosenthal, MD > > University of Wisconsin - Dr. Marc Drezner > > Medical College of Wisconsin - Bradley W Taylor > > Marshfield Clinic - Simon Lin, MD > > University of Minnesota – Dr. Connie Delaney > > University of Nebraska Medical Center - James McClay, MS, MD > > University of Texas Health Sciences Center at San Antonio – Dr. Daniel Hale > > University of Texas – Southwestern Medical Center – Dr. Lindsay Grey Cowell > > University of Kansas Medical Center – Dr. Russ Waitman > > > > A number of you will have heard about this on the GPC-All calls, but for > those that have not, apologies for the short notice on this. > > > > Thanks > > > > Kieran > > > > Dr. Kieran Pemberton > > Administrative Director > > Frontiers: The Heartland Institute for Clinical and Translational Research > > University of Kansas Clinical Research Center > > 4350 Shawnee Mission Parkway > > MS# 6001 > > Fairway, KS 66205 > > Phone#: 913-945-7567 > > E-mail: [email protected] > > > > All publications resulting from the use of Frontiers resources are > required to credit the relevant grant by using the text below; > > > > CTSA credit: > > "This publication [or project] was supported by an Institutional Clinical > and Translational Science Award, NIH/NCATS Grant Number UL1TR000001. Its > contents are solely the responsibility of the authors and do not > necessarily represent the official views of the NIH." > > > > _______________________________________________ > Gpc-als mailing list > [email protected] > http://listserv.kumc.edu/mailman/listinfo/gpc-als > >
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