Minutes of GPC-Engagement Teleconference Call, 9:00 AM May 6th 2014. Dr. Lauren Aaronson hosting
Full roster needed of main lead at each site, so we can get it out to everyone. 9AM on 1st Tuesday of Month is the best option for Monthly conference call for the majority. Need monthly 1 hour call to ensure milestones of the GPC are met. We will re-send the Doodle Poll (DP) for everyone to fill in. Maybe some didn't see it. Want to include everyone. Cheryl Jernigan introduced as our rep on the National Patient Engagement Task Force. An agenda will be sent out ahead of time for future calls. Need to find out a number of items from each site. Do you have an existing patient panel or advisory group? What is the structure you currently have in place for finding a pt voice. A Milestone that we need to meet is having a mechanism for reaching out into pt community for a voice. Boot Camp in August. Bring together reps from each site. Lead PE and a couple of pts from existing panel or advisory grps. Educational and networking opportunities. Discuss lofty goals that PCORNet has for us. There has been discussion of a possible disease grps and pts meeting at same event. DH from Minnesota. What are the Milestones coming up this Summer. 4.6 - Description of patient roles and responsibilities in governance is developed and submitted to PCORI. 4.7 - Approaches to enhancing patient involvement in governance are developed and submitted to PCORI. Both are due June 2014. We will have one more conference call before this date. These milestones fit with each site identifying grp in place or how we will establish one at each site so we can call on when a need arises. Cheryl is one pt rep, but need a much broader involvement. Each site to send us a description of what they have in place. Andrea asking if we are asking about a GPC group in particular or a pt group in general? Don't want to reinvent the wheel. Most sites have CTSA CPH in place. DH in Minnesota has one in place but not specific for these conditions or diseases. Do we need one? Some of the time we may think yes, some of the time it is no! It would be good if we could have pts from all 3 grps. Maybe start with a generic one 1st, then see if we can reach into the community for the disease cohorts. Edith - send out a request of what we want. Many sites may not be up to speed. Message to send out this week or next asking for specific info from each site. Need to reach out to other sites - no response to phone call or DP. Program manager at each site to help as the point contact to identify who to contact. KK - 2 asks for info. Governance rep from pts at each site. Nature of the PE activities that would be site specific. Easier for all to respond to survey monkey or an email in narrative form? BG at Marshfield - if questions are clear then DP, if ambiguous then an email. Open ended questions of the group. Andrea agrees. Different programs. Richer info. KK to put email together. Bob - discussions on PCORNet calls. Demonstrate a multi-site trial. Pts and providers involved in this. Does KS have asks for the group for the trial. LSA - each site will hear from us about how each site will be involved locally. ALS group furthest along. Not sure how far along that is. Boot Camp meeting in KC on Monday August 18th. When we send out email next week, we will ask for ideas for best use of time at this for pt leads and pt reps from each site. Need some education/common ground/content for pt reps as we go forward with the GPC. Edith says this 1st conference call has been helpful. For the Boot Camp, assume PE folks would come in on the Sunday night and have all day meeting on the Monday. In the email going out, we will ask to hold dates and to share with whom you think should participate. Email will also ask for broad based questions on current activities around PE, if you have standing committees, community or pt advisory boards. High level ask of summarizing what resources you have. Also probe a bit on the governance issue and the project related input issue for your preferences on how to move ahead with that. Need to put some structure on this. Struggling to do that when we're all pretty foggy. Try to get that out by the end of this week or beginning of next week. Need to reach out to individual sites where we don't have a rep yet or who couldn't be on the call. We will catch them up on what we discussed. Really want to bring patients and clinicians together at the August meeting. Thanks to all. Call ended at ~ 9:37 AM 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]
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