In Attendance: Augustina, Karleigh, Sara, Andrea, Divya Bhati, Simone Dahrouge
ACTION ITEMS
-Follow-up with Dielle about whether to recruit more youth from Toronto – Andrea
-See if we can advertise recruitment for YAC through the EPION email list – Andrea
-Clarify whether sites keep in touch with youth that completed EPI services – Andrea
-Clarify whether ethics approval is actually needed for YAC posters – Andrea
-Inform Steering Committee/other committees that youth want to be approached for feedback on practical rather than hypothetical topics – Augustina/Andrea
-Follow-up with Dielle re: Karleigh’s attendance at Steering Committee – Karleigh
-Complete the Monthly Survey that is sent out after this meeting – Youth Advisors
-Check out the EPI-SET website, and YAC’s page on there – All Youth Advisors
-Draft recommendations and supports for YAC – Divya/Simone
MINUTES
Welcome and Icebreaker
-We discussed the variety of activities that everyone will be doing over the holidays
-Introduction/Roles: Karleigh is the head of the Child and Youth Program at CAMH; she works with researchers to identify areas where participant partners can be involved.
Guest Speaker/Investigator Series: Drs. Simone Dahrouge and Divya Bhati
-Simone and Divya are researchers at the University of Ottawa, specialize in patient engagement.
-They work with research teams across province for meaningful patient engagement in research
-For example, they design evaluation tools like surveys to measure engagement during a study.
-They have a National Patient Advisory Board that meets every year to conduct workshops and design tools together.
-Events and training opportunities are updated every 15 days on this website.
-They are here to support YAC members, and their experience advising on EPI-SET
Evaluating Your Experience on EPI-SET’s YAC
-For EPI-SET, here are the tools they are using to evaluate your engagement/satisfaction:
1) Baseline Needs Assessment survey
-From this, they created the Baseline Survey Report to summarize findings
-The report found that YAC members felt they could communicate on the project
-It is important to include in the report the differences and similarities between YAC and FAC opinions
2) A Monthly Survey (after each YAC meeting)
3)Periodic Survey (three times during the study, they will ask how you feel you have influenced the study)
Opportunity to Highlight YAC
-The SPOR Evidence Alliance Newsletter is sent out to 41 public agencies across Canada and can be great exposure to other research teams and policy makers.
-It has a featured “research team” corner, where we could be highlighted.
-The idea would be to release a series of articles – about EPI-SET as a whole, the Youth and Family Advisory committees, and Augustina and Lillian (from the FAC)
o For YAC – the articles can discuss our initial contributes to the study and our evaluations, would incorporate quotes from YAC members
-Augustina thinks it is important to let other stakeholders know about the different types of engagement that EPI-SET is providing
YAC Member Recruitment
-We have identified the need for more members and representation from diverse regions
-Sara and Karleigh both offered to reach out to youth in their groups, but Dielle previously indicated we want to engage more youth from outside the Toronto area – Andrea to follow-up
-YAC members do not have to have received NAVIGATE – we want diversity in experience
-Andrea has sent out the YAC-designed recruitment poster to Sudbury and North Bay sites
-Andrea has sent an information flier to all sites about how to refer youth to us
-Andrea has also updated the YAC page on the EPI-SET study website www.epi-set.com
-Andrea is in touch with sites to figure out more strategies for recruiting from them, but we are going to follow-up on reaching beyond the 5 EPI-SET sites
YAC Member Needs
-Youth and family perspectives are equally important and they contribute differently; whereas the FAC might be more vocal, the YAC may speak up less
o This may be due to information presented in a way that is not accessible to YAC members. For example, at Steering Committee meetings, lengthy discussions about ECHO and Fidelity don’t necessarily call for the youth perspective
o Making information more accessible to the Youth Lead will help them determine whether youth can give feedback on that topic
o Committees need to help youth partners by making information clearer and more relevant
-We want to avoid burdening youth partners with heavy research terminology, could be a barrier for engagement
-Reading about measures is different from understanding their application
-As we continue to onboard, we should help youth partners understand their role and how involved they can be
-It will make more of an impact for researchers and EPI-SET staff to bring tangible topics to the committee and ask youth their feedback on something specific, rather than hypothetical feedback
Reimbursing EPI-SET Participants
-Currently, youth that enroll in the EPI-SET study will be receiving Visa gift cards – in the same way that remote YAC and FAC members do
-The research team has identified some inefficiencies with the Visa gift cards (i.e. the delay in receiving them from mailing out, fees and mailing costs)
-The research team has asked for YAC opinion on sending Amazon gift cards by email, but still giving participants option of the Visa gift cards
-Augustina approved the option of the Amazon gift cards since youth would receive it faster and wide variety of purchasing options
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