Please see the follow-up email from Dr. Aaronson below; All,
This is a follow-up to the email we sent earlier this week. It's been suggested that having a better sense of the plans for our LEK would help identify the best patient representatives. We totally agree. The challenge is that we are just now planning the LEK and don't have a lot of specifics just yet. We will discuss these plans at our regular "first Tuesday" monthly calls, the next one is scheduled for Tuesday, June 3, at 9am CDT. For now, consider that the purpose of our anticipated 3 hour session on Sunday afternoon, August 17, is to begin an education process for our patient representatives about research, about the PCORnet, and about the GPC and our interest in their active participation and involvement in the work of the GPC. The sessions on Monday also are still being developed, but there will be sessions with everyone, sessions broken out by our three disease cohorts (ALS, Breast CA, and obesity), and sessions on other issues relevant for moving the GPC forward. We are anxious to begin our engagement of patients in the work of the GPC. Participation in the LEK will be the first active step toward doing so and we hope their participation in the LEK will include contributing to development of plans for continued engagement patients and patient representatives. However, this requires that we each identify two patient representatives at our local sites who we may call upon to provide their input, ideas, reactions etc and who can participate in the LEK. Our longer term plan is to build on our investment in the two lead patient representatives who will attend the LEK to reach further into our respective communities to find appropriate patient representative partners for specific projects arising from the GPC and our participation in the PCORnet. Our goal is to ensure we are able to nimbly call on patient representatives for GPC work as it develops. So, please answer the questions embedded in the previous email by the end of next week and think about who might be strong patient representatives and interested in working with the GPC in an ongoing way to provide the voice of the public. We must start somewhere! Thanks for your participation and commitment to the success of the GPC! 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."
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