Attendees: Lillian, Nicolle, Marie, Hugh, Chelsi, Aristotle, George
Action Items
Next Advisory Committee – Chelsi
Send doodle poll with new times for next advisory meeting
Connect with Simone Dahrouge to come to the next advisory meeting
On-Boarding Package – Chelsi
Include a flowchart of youth/family advisory engagement tool
Include the RAISE study
Evaluations
Present draft of advisory engagement tool to committee – Lillian
Get information regarding potential family member assessments for those within NAVIGATE – Chelsi
Web portal – Chelsi
Include RAISE study
Reminder that modules are on the web portal as well
Minutes
Introductions and housekeeping items
Waiting for Research Ethics Board amendments to go through so we can start paying those who are off site via visa gift cards
Website Access – some tabs are open to the public and others are password encrypted: NavigateON
Revision of Family Engagement Tool
Family/Youth Advisory Engagement Tools
Lillian/Augustina are editing the engagement surveys for the advisory group. Once approved, Lillian and Augustina will share with their advisory committees for additional feedback
Goal is to not overburden the advisory members with surveys, therefore the questions would be very brief but to also get an understanding of what it means to have an impact on the research, not just them reviewing whatever is on the agenda
There would be:
Onboarding Survey – asking about goals and what they expect from this group,
Monthly Surveys – a quick survey after each advisory group, research staff will review this after every meeting to make the next meeting better and include their feedback,
6 Month Survey – given every six months of the project, a more formal data collection measure of their engagement,
Periodically Survey – done 3 times throughout the 4 years of the study, to collect information that members have specifically contributed
Patient and Family Members participating in the study evaluation
Objective 3 deals with patient evaluation, though there is no family member assessments other than some family members getting interviewed
We will look into self report measures for family member assessments as we do want to have multiple perspectives of the NAVIGATE program
Open Discussion
SPOR Framework
Include it within the on-boarding package
Advisory members have to have knowledge around the SPOR framework and the project in order to respond accurately to the engagement surveys
The Youth and Family representatives on the governance structure
RAISE Study
Dr. John Kane facilitated the study with 34 sites. The sites were clustered randomized compared to the community care sites. 17 sites were using NAVIGATE and 17 sites delivered care how they normally delivered care. Those receiving NAVIGATE had better care.
Although the RAISE study was designed for those with primary psychotic disorder – Ontario is more diverse with their psychosis diagnosis (substance induced, bi-polar, etc)
The RAISE study had mostly SCZ diagnosis (which tend to have worse outcomes, though all of the NAVIGATE roles can be useful for any disorder not just SCZ
The NAVIGATE modules are flexible to adapt whatever the diagnosis is. Example: Making the substance IRT module one of the core 7 modules because they are more diagnoses of substance induced psychosis in the northern Ontario rather than the US.
There will most likely be some gaps, but we can learn from those gaps
The RAISE just focused on the patient level outcomes, They don’t have the same cost effectiveness like Ontario would with insurance plans
Yes some groups will be under represented – but all demographic should be represented within Ontario
Outcome measure 3 is the one within the RAISE study primary, although we added the other objects.
Objective 1
Measure based care
What the government wants to look into
Involves fidelity – the project is set up to measure the fidelity to the standard of care. To say what you are delivering is economically cost effective
Objective 2
Health outcomes and health services
Government members are on the EPI-SET team as well to open lines of communication
Objective 3
Illness and functional outcomes
What the RAISE study focused on
Objective 4
There are two parts to this objective (1) engagement surveys with advisory team members, and (2) in-person interviews with some patients and family members who are receiving NAVIGATE and are participants within the project
This is where the SPOR framework is constructed in the grant
CAMH did interviews with patients/family members when NAVIGATE was implemented, and the feedback that was gathered was used to improve practice
What do you see the biggest risks to the outcome measures?
It all depends on the outcome measure. It is possible that NAVIGATE is not going to show dramatic improved results as the sites are already enriched in their practice.
Although there is a provincial process for First Episode Psychosis, we believe it isn’t doing what it should be doing, and we have hope that the study will give us the data so there could be more funding dedicated to First Episode Psychosis treatment.
CAMH currently uses these outcome measures in other research studies that are clinical trials. They are validated and mirror the RAISE study
Implementation of NAVIGATE in our participating sites
It is unclear if implementation is better in larger or smaller centres. Sometimes it is more difficult to implement in a bigger setting.
Staff is used to dividing their time with two different roles – in the US they had the money to have them as separate roles – but we are working with existing programs so we need to find a way to meet those Ontario guidelines with the existing teams with the financial teams we have already.
Is there a protected budget? What we have today and that it won’t be eroded into mental health services.
Value of care of what is being implemented
Some of this work with representatives of the government with continued dis discussions about the current value of this work for allocation of funding. This is more of an external goal instead of a core objective
We are also working closely with EPION to ensure that everyone is advocating for the same thing - quality and consistency of the care
Our hope is that all sites in Ontario will use NAVIGATE for their coordinated care and there will be a budget for that
Our long term goal is to capitalize research funding and time to create a dedicated line between us and the ministry to deliver value based care
Revision of New Member package
Include the SPOR framework (Ontario SPOR Support Unit – people who are a part of our team)
The provincial lead on our team Simone Dahrouge – there is a review of 27 different patient engagement tools that measure engagement in this. They made the PCORI and PPEET smaller and will break it down
Objectives in plain language
Onboarding and brief training for new members coming in
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