Family Advisory Members:
Please respond to this email if Thursday August 15th from 3:00-4:00pm works for the next Family Advisory Meeting.
Email Chelsi if you spent extra hours working on things for compensation purposes
Set up call with Simone/Divya and YAC (talk to YAC first)
Send CIHR annual report to FAC
Create an advisory “wins” document
Reach out again to get a member from Durham
Follow up about EPION
Potentially follow up about Sudbury/Waterloo Wellington contact
Follow up about how to edit documents
Reschedule August FAC meeting
1) Engagement Evaluation/Questionnaire Presentation and Q&A
Presenter: Simone Dahrouge and Divya Bhati
We want to make sure we are capturing your involvement in the study.
The research ends up much better when engaging patients/youth and family, not just an opportunity for your participation but also an opportunity for the researchers to do better work.
Simone and Divya will be setting up a meeting with the Youth Advisory Committee as well.
The surveys look to capture:
o How you can contribute
o Identify areas where you want more training, support orientation, etc.
They typically start their meetings by going over the results from the last meeting – important for accountability, and making sure partners know they are heard and their contributions are being use/considered for decision making. Also, they use the time to explain when there are constraints, if partner feedback can’t be implemented.
o “being heard” language – family pointed out you need to make an impact, not just “be heard”
o One impact so far was that of getting family member perspectives on patient outcomes – at the last Steering Committee, they put a recommendation in to REB to amend to include patient outcome questionnaire for families
The intent is true collaboration, and to use these evaluation measures to adjust the direction of the advisory committees and research as needed.
Feedback won’t be identified, it will be anonymous
Aggregate feedback in their own group will be shared, can check if shared between groups (if youth would be comfortable)
We are now looking at measuring engagement, and youth are currently seeing the measures - they met with Dr. Kozloff about these at the last meeting
2) Check-in about kids
3) Research Project had to file an annual report with the funder (CIHR)
We will send it around to the FAC
4) Steering Committee Updates
George is filing an amendment to REB for family assessment of functioning
We should make a “wins” document
EPION Conference Budget
1 day travel, 1 hotel for North Bay, economical travel, dinner (breakfast/lunch included in conference)
We need to be fair to the entire project group, someone who comes this year might not come next year, for example.
Early bird – registration deadline in September
Nicolle is interested in attending the 2 days; Hugh is interested but wants to be able to pay for Nicole’s 2nd night in a hotel; Marie is somewhat interested as well, wants to see what the subjects, wants Nicolle to not be out of pocket.
5) Need a Durham member for the Family Advisory
Chelsi has reached out, Steering Committee has mentioned, we will work on getting another member
Will need someone from Sudbury and Waterloo Wellington as well
Will get potentially get Sudbury contact name to Nicolle, she sits on a board looking at mental health priorities (depending on whether they are at a stage where reaching out would be appropriate)
Hugh happy with answer about data quality and cleaning
Lillian is working on the family e-learning module, she finds them fairly easy to go through. Her husband is also working through it.
They use multiple sources, e.g. Youtube videos, refer to resources when they talk about something, looks good!
Marie was also going to sign in, Hugh is not going to do them
Nicolle signed up and started as well – found very interactive. It seems to be assuming that everyone is still in a state of psychosis, but not everyone is necessarily is at the end of that continuum/always in a certain state. Also, when will someone be able to do the course – everybody is different. Some language may also need to be adapted.
If you spent time doing the review of the questionnaires, etc. email Chelsi and tell her how much time you spent so you can be compensated for your time.
Chelsi will send an email and set up a call to work though how to edit the documents.
Lillian may be away in August, Nicolle may also be away, Chelsi will connect about that date and who is around.