In attendance: Augustina, Jasmyn, Chelsi, Alexia, Eva, Catherine, Paul, Aristotle, Dielle, Janet, Nandini, Nikki, Sanjeev, Sarah
Edit and send EPION submission to Steering Committee for approval – Chelsi
Connect with Mary and Janet for the site readiness survey to be sent to Durham – Jasmyn
Knowledge Product Document:
Share with the Family/Youth Advisory Team – Lillian/Augustina
Add in EPI-SET logo – Nandini
Follow up with PIs presenting their outcome measures to the advisory committees – Chelsi/Jasmyn
Follow up with possible family measures – George
Follow up with possible service engagement measures (validated measures) – Nikki
Connect with Aristotle/Alexia to schedule a meeting with North East LHIN to discuss details and then have a meeting with Sudbury – Dayna
Site Readiness Survey
11/15 have completed; no physicians have completed the survey
Jasmyn to connect with Mary and Janet for the site readiness survey to be sent to Durham
Accept all tracked changes
Add Part 1 and Part 2 in the titles (hopefully to be done back to back)
Implementation committee to chat with the sites leads
Add ECHO to Part 2 - Learning collaborative network
Spell check names/change intervention
Having the site leads come in person, we can have our annual study meeting during that time as well
To send out with edits for final review
Goal is to bring all documents to Steering Committee for approval
This document was revised from the Niagara site. To be reviewed by the FAC and YAC as well for additional feedback. Add in the EPI-SET logo
Potentially there will be site specific edits – if there are small changes it doesn’t need to go through the Steering Committee
Client orientation page – Niagara’s feedback –Too technically for the language, Nandini to share with the SC
Measures – family members
George and Aristotle attended the Family Advisory Committee meeting. From that, there could be the opportunity to add a caregiver version of a patient functional outcome measure
It would entail some revision for the consent and protocol – to get the patient’s permission and family permission
George has reached out to Sean Kidd to inquire more about potential self-report measures. Though self-reports would be easier.
What kind of feedback do you want from the family?
§ The thinking around this is getting a family member perspective of the patient’s care. For example if you ask the patient how they are doing they say ‘fine’ but if you asked their parents they would not think they are ‘fine’. So how would we get that perspective?
§ This would be separate from the interviews in Objective 4
Survey or interview?
§ Exploring both. Will send it back to the Family Advisory Committee and then figure out the logistics of it
§ A self-report version would be easier because we can just send them the link
How would this overlap with Juveria’s work?
§ It would be repeated assessments at the same frequency of the patients assessments
§ For example: the patient level WHODAS, there would be a family member assessment to have their perspective of the patients functioning – separate data
§ Juveria’s work is more part of objective 4 – Juveria might only do it once and not three times. Possibility of a mixed methods – potential for focus groups and structural methods from the different people that are involved
Worth thinking of family burden?
§ ‘Burden’ – Family Advisory Committee members reacted negatively to that language.
§ Could look at it – phrasing it as any other impacts
It will introduce an additional layer of complexity it is worth exploring. Family members haven’t engaged as well in the online component of a study at Slaight.
Town hall meeting of some sort – for the community to know about the project – FAC and YAC members can join.
Measures – engagement survey
Brief 5 min questionnaire within objective 3 to gauge service engagement
Examine both patient/family and how that may relate to their success in the program. We could look at the same content about their opinions about what makes them stay engaged in the services.
Or the possibility of introducing a validated self-report measure – if we introduce that at baseline or soon after if that has any impact on their effectiveness of their treatment
Good to implement – Send to the YAC and FAC after we decide
Measures – SURF logistics
Version of the SURF is a monthly version - that was used in the RAISE study
In our protocol we are doing it every 6 months, though in the version the timeframe is 30 days… therefore we are only catching the last month every 6 months … though if we extend that time period, we could run into recall issues
Decision - stick with 30 day timeline and collect that data at 6 month intervals
Onboarding New Sites
Dayna spoke with North East LHIN– planning to put out 1 FTE. If Sudbury gets 1 FTE, there is an understanding that they would have to implement NAVIGATE and participate in research
Sudbury does not know of this yet, but they would be on-boarded just like Waterloo-Wellington
Dayna will connect with Aristotle/Alexia to schedule a meeting with North East LHIN to discuss details and then have a meeting with Sudbury
Other parts of the province who is interested in NAVIGATE as well
The education department working on the training aspect
PSSP – can’t do in-kind for the whole province – Sudbury/WW are different because we made the commitment to them
Family Advisory Committee
Are we collecting this information? – regarding to the questions
Last FAC meeting George and Aristotle went and answered questions such as:
How we are following the SPOR mandate
Capacity building for the FAC member – to learn what SPOR is and the science behind that for that
The FAC members were very pleased with the them joining
Schedule the other PIs to present on their outcome measures to the FAC/YAC
Topics – Jasmyn and Chelsi to reach out to the PIs to create meetings with the FAC and YAC
Service outcome measures
Engagement outcomes measures
To have a group discussion the outcome measures first and if members are interested in joining the working groups they can