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Family Advisory Committee: June 7, 2019

Attendees: Lillian, Nicolle, Marie, Hugh, Chelsi


Action Items

Administrative

  • Reminder to send amount of time spent on revision of documents to Chelsi for documentation – All members

  • Add version number and date to onboarding document – Chelsi

Operational

  • Inquire about funding for family/youth committee members to attend – Chelsi

  • Reach out to the implementation specialist at Durham to inquire about advisory membership – Chelsi

WHODAS/Life Skills Profile – Chelsi

  • Inquire about the translation of the WHODAS/Life Skills Profile questions

  • Bring forth specific Life Skills Profile questions to be added to the WHODAS to the Patient Measures and Outcomes committee

Revision of Family Engagement Tool

  • To make comments/track changes of the attached documents – All Members

  • Change title to ‘family partners in research’ – Chelsi

 

Minutes

Honorariums

  • Confirmation that all members have received their payment via visa gift cards.

  • Reminder that committee members get paid for joining the project team tele-conference call

  • Reminder to send amount of time spent on revision of documents to Chelsi for documentation

Principal Investigators Collaboration with Committee Members

  • Sent dates out to investigators for availablilty to spend 15-20 minutes to speak towards their role with EPI-SET. Committee members to bring any questions around that area to the meeting.

  • Next meeting will be with Simone Dahrouge speaking around the Youth/Family Engagement assessments

EPION Conference (Early Psychosis Intervention Ontario)

  • Yearly conference, this year’s theme is Partners in Practice and Progress (reflecting the importance of the broader EPI community in our experiences as service providers, researchers, and individuals and family members with lived experience.

  • The EPI-SET team submitted two proposals (one focusing on the implementation and the other on the evaluation - four objectives of the study).

  • Successful applicants are notified: June 28th 2019

  • The conference date is: November 19th- 20th 2019

  • There is a lived experience videos section – still working out the details on this though the EPI-SET team would like to do it.

  • Chelsi to inquire about funding for family/youth committee members to attend

WHODAS

  • The patients will be filling out the WHODAS with questions that cater to their experiences, if we use the WHODAS for the family members it will be easily to evaluate the data

  • Do not like the term ‘disability’ within the title – can remove when put into REDCap

  • Overall the members like the WHODAS as the language is good

  • Questions regarding the translation of the questions – French/Spanish?

Life Skills Profile

  • Members like some of the questions from the life skill profile – that they believe are not captured in the WHODAS

  • Members to flag which questions they like from the Life Skills Profile to potentially add to the WHODAS

  • Questions:

  1. #1: Does this person generally have any difficulty with initating and responding to conversation?

  2. #11: Does this person generally look after and take her or his own prescribed medication (or attend for prescribed injections on time) without reminding?

  3. #12: Is this person willing to take psychiatric medication when prescribed by a doctor

  4. #18: is this person violent to others?

Revision of On-Boarding Document

  • Family - Jeff (PSSP) working on adapting the language of the 4 objectives of the project to make it more digestible

  • Put a version number/date in

  • New Sites – still a working document, though mimics some of the family onboarding document

Revision of Baseline Family Engagement Tool

  • Attached is the document explaining the order of the different surveys for family/youth committee members (different assessments at different time points as to not overwhelm the committee members)

  • Asking members if they attended does not demonstrate engagement

  • To be equal partners within the research

  • Changing it to ‘family partners in research’ – title

  • Committee Members to review the document and make comments/track changes

Project Team Call

  • Waterloo-wellington is joining us again (after having to be put on hold for staffing reasons). We have oriented them to the project and we are working through getting research ethic approval and legal contracts. Each site has a PSSP (Implementation) support which they are connecting with Waterloo-Wellington now.

  • Sudbury is looking on coming aboard the project again. There is now potential funding for a full FTE (staff member). There are calls with their leads and Aristotle this week.

  • For the northern sites (Sudbury and North Bay) sorting through advantages (smaller sites, not want to overweight the measurement part) and disadvantages (they are different services altogether) of grouping them together or not

  • Other sites who were not originally part of the grant are interested in the project as well. Since they were not part of the grant, they would not be able to participate in the research site of it, though they would still be able to receive NAVIGATE. Looking into how to support this type of implementation.


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