Thank you Sarah and Hello GPC PE members!
A few inquires our team has in anticipation of the 8/26 teleconference:
1.
We have not missed the PE 're numerations' guidance from PE Central,
correct?
2.
Curious if members would be willing to add a bit more to their
'introductions' below - maybe as an additional column to the roster you
created? -- offering a brief description or statement of their PE
orientation or approach? We're appreciating the range of settings and
capacities that folks are operating with/from! UW's description might be:
/The UW GPC PE team reflects expertise from our Office of Clinical
Trials and our CTSAs Community Engagement and Research programs, to
ensure GPC stakeholder engagement approaches reflect clinical research
recruitment best practices, as well as effective stakeholder engagement
approaches able to operate within and outside of the academic research
and health care delivery system setting.
/
3.
At next meeting, would it be possible for PE Central to briefly
reiterate the 'charge' associated with the monthly GPC PE
teleconference? Want to ensure our team understands how these connect
to/ inform the GPC Milestone 4.22 for Phase 2....
4.
The October LEC DRAFT agendas were distributed to the GPC PIs last week
-- not sure everyone on this list has seen those, but clarification
about target participants for the Day 1 v Day 2PE activities/track would
be useful
Thanks much for your consideration and welcome thoughts from other sites too
UW GPC PE team (Andrea, Betty, Gay and Sarah)
On 7/28/2015 10:56 AM, Sarah Schlachter wrote:
Patient Engagement (PE)
7/22/15 Call notes
/action items at bottom of email/
Welcome. Some members new, some members have been in the group for a
while.
·Please check the roster and make any corrections.
·As of yesterday, GPC is funded for Phase 2!
Introductions:
·Lauren Aaronson - KUMC – lead for GPC Pt. Engagement in Phase 1, one
of 2 PIs on KUMC CTSA. Passing PE baton to Kim Kimminau, who has been
a co-lead in Phase 1,
·Kim Kimminau - KUMC – background biomedical anthropologist. Worked
with PE through the KUMC CTSA (Frontiers) and also with community
partners through family medicine research unit.
·Cheryl – lead Patient Representative for the group, represents GPC at
national level. Not on call today.
·Kieran Pemberton - KUMC – Background in molecular biology.
Administrative Director for Frontiers for 3 years. Has served as Lead
Project Manager for PE in Phase 1
·Sarah Schlachter - KUMC – Asst Program Director. Served as Project
Manager for height/weight cohort and now taking on project management
for PE. Emails will likely come from her!
·Kelsey – CMH – Clinical Trials Coordinator at Children’s Mercy. Also
works at KU. Works in weight management, often with kids
·Deb Multerer – Marshfield – With the Center for Public Health, has
been part of this group throughout Phase 1. Looking forward to gaining
momentum
·Bob Greenlee – Marshfield – Site PI for Marshfield. Epidemiologist by
training. Involved in PE from outset
·Betty Kaiser and Gay Thomas – UW Madison – Both work with Wisconsin
Network for Research Support – community and patient engagement unit
of CTSA at Wisconsin. Betty and Gay are new to the group and keeping
up with the reading!
·Andrea Maser – UW Madison – Works with the Office of Clinical Trials.
New to PE group
·Sarah Esmond – UW Madison - Institute for Clinical and Translational
Research, worked with PE Group in Phase 1, serve as project manager
for Wisconsin for GPC activities
·Liz Swanton – Iowa – with CTSA at Iowa, work in community
partnerships. Just beginning to move to patient engagement. New to the
PE group.
·Deb Hendricks – MN – Asst Director for community research for CTSA.
Original member of the PE group for Phase 1.
·Kate Wilkinson – UTSW – Research participant advocate. Work closely
with CTSA on different big university research projects
·Jo Bergholte – MCW – Involved with ALS cohort on Phase 1. Moved to
CTSI at MCW for clinical trial management. New to the group
·Deb Meyer – Nebraska - on chat, no microphone; Deb was with the group
in Phase 1
·Paula Winkler – UTHSCSA – on GTM, no audio
1.Much of group activity in Phase 1 was sorting out role in Patient
Engagement, as opposed to Community Engagement
a.As a result of this discussion, some members are putting on workshop
for North American Primary Care Research Group meeting in Cancun
b.Kim will circulate the work put together towards this
2.Reforming the group was somewhat in light of our responsibility in
facilitating work with Patients, not really with groups or
organizations. Have reformed this group to get broader representation
of people who work with patients. We need patients to work directly
on projects such as:
a.The Research Opportunity Assessment (ROA) group. Iowa has identified
a patient to serve on this.
b.GPC Patient Advisory Council (PAC) - would like a patient
representative from each GPC site to serve. Patients who serve on this
board might also contribute to the ROA group to weigh on the
reasonableness of the study and to help identify other patients who
could work with the specific proposal for development with patient input.
3.Learning Engagement Conference (LEC) - October 1^st and 2^nd in
Kansas City.
a.Would like PE Officers to attend as well as a patient from each
site. Please start to consider patients you might invite – these
people would also participate in the Patient Advisory Council - so
there is a bit of a commitment
b.Understanding is that site budgets cover staff travel costs, GPC
Central will cover payment and reimbursement of patient travel
c.Flyers attached to previous email can be modified to help recruit
patients for activities. Feel free to recruit folks however works best
for each site
d.Compensation: Have discussed a standard rate for compensation for
patient time – participation on webinars, reviewing documents, etc.
i.Want standard rate across all sites
ii.more compensation for those doing more work
iii.Kim K working on a table that details the work being requested vs.
flat rate or hourly rate compensation. Checking on final Phase 2
budget figures. To be distributed before next monthly call
e.Time Commitment: may be different for different roles. Will be
detailed in the table
f.Please pass any recruitment materials used at your site
4.Phase 2 proposal text provides background on Phase 1 activities
5.Milestones – PCORI is based on contract mechanism where PE needs to
meet specific milestones
a.Milestone 4.22 asked for approaches. A list was created. Some sites
may follow some approaches, but it was generally a list of ideas.
b.Milestone 4.23 “Approaches for enabling patients to receive research
results are implemented” is overdue and we need your input.
i.If any of these approaches are used by your CTSA, institution, a
local investigator, or group – very broad level of “site” – please let
us know. Even approaches not related to GPC projects.
ii.Copy out the table to 10 approaches, check off those that your site
uses and send it back to us. Feel free to add other approaches you use
iii.Feel free to provide detail on what has worked well in different
areas (rural/urban), groups, etc. If you have that detail, great.
iv.In general, what has worked for your site (broad interpretation);
what can we discuss and take to GPC as a recommendation from us, the
PE group, on how dissemination can work well possibly use in an SOP.
1.Sharing these successful approaches could be leveraged for projects
beyond PCORI
6.Before next month’s call/action items:
a.PE Central will distribute table re: remuneration
b.PE Central will better define the ask for the Patient Advisory
Council and draft a flyer
c.K Kimminau will send abstract for workshop on PE vs. Community
Engagement
d.Sites: Send your responses regarding approaches to dissemination
used at your site
e.Sites: send your flyers and recruitment resources to create a “library”
i.Your local resources may work well to recruit a patient for the
Patient Advisory council, or you may already have someone in mind
ii.Betty and Gay will send on their flyers which have been most
successful with very explicit information about the ask.
f.Sites: please send on any requested agenda items
We will be bringing on PE Officers from our new Phase 2 sites, U
Missouri and Indiana U.
Sarah Schlachter, M.Ed.
Assistant Program Director
Frontiers: The Heartland Institute for Clinical and Translational Research
University of Kansas Medical Center
4330 Shawnee Mission Parkway, Suite 375
MS 7003
Fairway, Kansas 66205
Ph: 913-945-9137
[email protected] <mailto:[email protected]>
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