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Family Advisory Committee: September 12, 2019

In Attendance: Lillian, Marie, Hugh, Nicole, Sophie, Laura, Kevan


Action Items

  • Ask Steering Committee what happens to patients once NAVIGATE ends - Lillian

  • Try to set up a joint meeting between the Youth Advisory Committee (YAC) and Family Advisory Committee (FAC)- Dielle, Laura, and Andrea

  • Ask what the FAC is doing in terms of a presentation for the EPION conference – Laura

  • Have a representative from Performance Measures and Outcomes come to the next FAC meeting- Dielle and Laura

  • Provide feedback on the family e-learning module from the other FAC members – Lillian

  • Forward the link for the Families Living with Psychosis Tutorial to Laura- Lillian

  • Help Marie with document editing – Laura

  • Prioritize FAC recruitment – Laura and Dielle

 

Minutes


What happens to patients after EPI?

  • When youth are discharged from the EPI program, no further programs are offered, and no psychiatrists are able to take on new patients

  • Many committee members have experienced scenarios like this

  • One member mentioned that their family was passed to another service

  • Will inquire with Steering Committee

Youth Advisory Committee

  • Members spoke with Sarah about possibly sending a delegate to the youth committee to show them that they can have an impact

  • Will look into setting up a joint meeting with the YAC and FAC

EPION Conference

  • Nicole is registered and sharing transportation with the manager of North Bay

  • Lillian may only be able to attend the day of the conference with the family advisory committee presentation

Preliminary Family and Youth Engagement Report Outcomes

  • Members had trouble understanding the numbers there is a request to have it in a different format

  • Overall, FAC and YAC feel like they are engaged and heard, want to participate, lots of positive responses given

  • Members would like to have a better understanding of the measures in the study, they knows that the youth care about real world outcomes in terms of function

Families Dealing with Psychosis Online Tutorial

  • Marie was unable to access the video

  • Nicole was able to access it, but noted that it was not simple. She said that it needs to be easier to access so others can access it.

  • Nicole mentioned that the video is targeted at parents, but needs to be more broad

  • Lillian liked the structure of it and the fact that it gave a better overview of psychosis compared to information on the internet

Physician Engagement

  • Hugh was concerned that sites are struggling with the study, since FAC recruitment has been difficult

  • Sophie mentioned that physician engagement in other studies has also been tough

  • Physicians will be doing a call with Aristotle and George, but there are problems because physicians are not being compensated and there are few of them. They have decided to move the calls to lunch time and shorten them to encourage physician participation. They will also look into giving physicians education credits for the calls

  • Nicole mentioned that providing education hours to physicians has helped physician engagement in northern Ontario

Family Advisory Committee Member Recruitment

  • Everyone agrees that this needs to be a priority.

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