Yes indeed, that is what we are hoping to get: real patients to join us on both Sunday and Monday! Kieran, will you follow-up on this? Thanks!
From: Russ Waitman Sent: Monday, July 14, 2014 10:42 AM To: Richard Barohn; gpc-als; Kieran Pemberton; Laura Herbelin Cc: Kim Kimminau; Lauren Aaronson Subject: RE: Learning Engagement Kick-Off (LEK) Meeting in Kansas City August 17 and 18. I just met with Kim and Lauren: if we could get actual ALS patients that would be terrific, Russ From: Richard Barohn Sent: Monday, July 14, 2014 9:14 AM To: gpc-als; Russ Waitman; Kieran Pemberton; Laura Herbelin Subject: RE: Learning Engagement Kick-Off (LEK) Meeting in Kansas City August 17 and 18. Russ or kieran get back to David I thought we were just having docs or coordinators come in that Monday We r not asking als pts to come in..are we? Sent from my Samsung Galaxy S(r)4 -------- Original message -------- From: David Walk Date:07/14/2014 8:59 AM (GMT-06:00) To: gpc-als Subject: Re: Learning Engagement Kick-Off (LEK) Meeting in Kansas City August 17 and 18. 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]<mailto:[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<tel:913-945-7567> E-mail: [email protected]<mailto:[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]<mailto:[email protected]> http://listserv.kumc.edu/mailman/listinfo/gpc-als
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