On behalf of Dr. Aaronson, could the members of the GPC-Engagement group please respond to the following;
Thank you to everyone who was on the recent call we had on May 6! I believe we now have at least one person identified at each of the 10 GPC sites who is the main contact for our patient/community engagement activities. For some sites we have more than one person, and that is fine. Please don't hesitate to let us know if there are others from your site that you want on our regular communications. Attached is a current list of names and contact info for all in our patient engagement group, organized by institution. Please review this and send us any corrections or additions. Thanks! During the call we discussed two major issues: 1.) A critical need for descriptive information from each of you; and 2.) Plans for the upcoming "LEK" in Kansas City on August 17 and 18, 2014. I will start with the latter and then provide the specific questions to which we need you to respond by the end of this month, Friday, May 30, 2014. In March we held a "Hackathon" in Kansas City to formally launch the GPC that was attended by site PIs and the informatics specialists. We are now planning the 6 month meeting that was proposed in our original application. This meeting, also scheduled to be held in Kansas City, will be on Monday, August 18, 2014. It is currently dubbed the "LEK", for "Learning Engagement Kick-off". As you may know, the mascot of the Greater Plains Collaborative is the Greater Prairie Chicken, which is a grouse, and a "lek" is a gathering of grouse. For your amusement, check out both this Wikipedia link about the Greater Prairie Chicken, http://en.wikipedia.org/wiki/Greater_Prairie_Chicken and this brief introduction to our network that includes a fun video of the Greater Prairie Chickens at a lek, https://www.youtube.com/watch?v=IaOAYnXbGjI&feature=youtu.be A main objective of our upcoming LEK is to bring together our patient/community group with our disease cohort groups, and to establish how we will all work together and integrate our patient representatives in the work of the GPC. To ensure that our patient representatives are up to speed, we are adding an introductory session just for them (and us) on Sunday afternoon, August 17, that will be followed by a mixer and dinner. It is very important that you identify 2 patients or patient representatives who will join you and come to Kansas City for the LEK on August 17 and 18. While some of you may identify a patient or patient rep from one of our disease cohorts (ALS, Breast Cancer, and Obesity), this is not required. You may select whoever you think would be good patient participants in the GPC. Because this meeting is scheduled before our second 6 months, we understand it may require re-allocation of some funds at each site to cover the travel expenses for you as well as your patient representatives. Dr. Waitman assures me that this should be doable. Please arrange to arrive by early afternoon on Sunday as we'd like to start our special orientation session by 2 or 3 PM. More specific information about these plans will be sent as they are developed. Thank you for ensuring that at least one investigator/staff and 2 patients or patient reps from your site are scheduled to attend the LEK. More are welcome!! Now turning to the first item for which we are requesting some specific responses from you. The more we learn about each of our current resources to activate patients and engage them, the better. So, beyond these questions, please volunteer any information that will help us gain an understanding of your current patient engagement efforts. Feel free to just reply to this email and provide your text answers below each question. If you have any questions you would prefer to discuss, please contact Kim Kimminau at 913-588-1949 (office) or 913-787-6626 (cell). 1. Do you or any other organization or program within your institution support an ongoing, engaged Patient Advisory Group (PAG)? YES____ NO____ If YES, please describe the purpose of the PAG(s)? (e.g., Does the group review protocols, serve on an ethics or IRB committee, advise your CTSA community engagement program, provide feedback on hospital care experience, etc.) 2. Do you or any other organization or program within your institution support an ongoing Community Advisory Board (CAB)? YES____ NO____ If YES, please describe for each CAB, what community(s) they represent and what is their role(s)? 3. Do any patients or community members participate in any health information related research or activities (for example, advise on your online patient recruitment registry; serve on an HIT advisory board, etc.)? YES____ NO____ If YES, please describe their role(s). 4. How did or do you plan to quickly identify 2 patient leaders in ALS, breast cancer, obesity, or another disease to come to Kansas City to attend the LEK meeting on August 17 and 18? 5. What attributes did or are you looking for in your lead patient advocates? 6. If you have a current plan for how you will engage patients/advocates in your GPC efforts, please share them. THANK YOU!!! Lauren 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]<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 Community Engagement Contact List.docx
Description: GPC Community Engagement Contact List.docx
_______________________________________________ Gpc-engagement mailing list [email protected] http://listserv.kumc.edu/mailman/listinfo/gpc-engagement
