Hi all, Please see the RED requests below. I also edited the childhood obesity 1 pager on the fly during the discussion, so please reply back in track change with any other suggestions for improvement along with any ideas for STRATEGIES that could work to recruit participants to the discussion groups (and cc Sarah Schlachter [email protected]<mailto:[email protected]> as well, please, as she is the manager for the obesity cohort). Thanks everyone! Kim
******************************************************* The milestones are: * 3.13: Patient training modules disseminated to patients We don't have any (if your site DOES have training modules relevant to our PCORI/PCORNet work, please let us know by MARCH 7 COB) * 4.8: Implementation of patient involvement in governance Engagement Circles powerpoint slide deck (co-created/edited using Gotomeeting) * 4.9: Report #1 summarizing patient involvement in governance Plans for developing a patient engagement board (Mia) Project manager deficit/delay (Jim) Send Kim Kimminau [email protected]<mailto:[email protected]> more challenges/successes at each of your sites BY MARCH 7 COB * 4.20: Approaches for patients to contribute to development and prioritization of research questions are designed and submitted to PCORI Not accomplished yet * 4.21: Patients contribute and prioritize research questions ALS focus group working on priorities; other examples at your sites? If so, please share! From: [email protected] [mailto:[email protected]] On Behalf Of Kieran Pemberton Sent: Monday, March 02, 2015 5:56 PM To: [email protected] Subject: [Gpc-engagement] GPC-Engagement Call Tuesday March 3rd 9:00 AM CST, (636) 277-0130 Access Code: 720-625-029 The Agenda for tomorrow's call is as follows; 1. Cheryl and Jody's update Very exciting and well attended (~all CDRNs and PPRNs were represented; very diverse group re: experience with their PCORI network) Online space to stay in touch Discussion of forging new ground Role of patient stories - how can researchers learn how to listen and tease out key value and relevance of patient experience and stories Training demand - need concept and practical help Pipeline to Patient Networks and learning from other communities Steering committee meeting and used World Café model Opportunity for group learning among patient advocates - can learn from one another and need venue to be able to share Led and facilitation was done by some of the patient advocates - identified different strategies that can advance the "cause" Great opportunities to connect within the GPC and among others Focus of learning from patient stories is a critical aspect of advance CER/PCORI research; stories can add a lot! Impact of patient experience on how research is designed - there's a lot to learn from this The PPRNs have much to share; they're at the front of this topic and we can learn from their strategies (e.g., social media use for recruiting patients; sharing the discussion of priorities among research opportunities) Recognition that health data truly has the opportunity to address patient-relevant and patient-priority research questions Protection of confidentiality still crucial; must be balanced against speed and value of pulling data together to answer questions definitively Discussion about patient compensation - many aren't, but it's important to talk about. Ex. Out of pocket expenses/reimbursement vs. pre-payment for costs for airline ticket, hotel, transportation etc. and being paid to participate (time lost from family, work, etc.) - this speaks towards the value that is placed on various participants/equity Looking towards Phase II of the GPC - we need to address some of these concerns and how we need to structure this work to make it more smooth and effective Next steps? Consensus that the group liked (and learned a lot) and wanted to see continued...TBD once PCORI integrates experience/ideas that were forwarded during the meeting (they (PCORI) surveying and still gathering information about next steps. Local and national levels of PCORNet was a valuable aspect of attendance - the puzzle is coming together! Issue of how to provide "on ramp"/materials/org charts/ all the puzzle pieces/"connect the dots" etc. for new participants to help them get a vision and understand the overarching PCORNet objectives; also adds efficiencies 2. Milestone Report 3. 1 pager for the Obesity Cohort inviting patients to join 4. Suggestions for individuals to be asked to join a Focus Group for the Obesity Cohort GPC Engagement Monthly Meeting * Please join my meeting from your computer, tablet or smartphone. https://global.gotomeeting.com/join/720625029 * You can also dial in using your phone. United States (Long distance): +1 (636) 277-0130 Access Code: 720-625-029 Thanks Kieran Dr. Kieran Pemberton Administrative Director Frontiers: The Heartland Institute for Clinical and Translational Research University of Kansas Medical Center 4330 Shawnee Mission Parkway MS# 7003 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 1 pager Weight Cohort focus groups EDIT 3 3 2015.docx
Description: GPC 1 pager Weight Cohort focus groups EDIT 3 3 2015.docx
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