Family Advisory Committee: July 11, 2019

Action Items

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

Chelsi

  • 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

 

Minutes

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)

6) Other

  • 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.

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