In attendance: Catherine, Divya, Jasmyn, Lillian, Aristotle, Augustina, Dielle, Simone, Nandini, Eva, Alexia, Janet
Regrets: Jean, Sanjeev, Chelsi, George
Send Durham contract for full execution – Dielle
Create corporate authorship – discuss at project team conference call
Protocol paper manuscript – Nikki, George, Aristotle
Set up standing time for all-team/investigator’s call during SC once/month – Jasmyn
Invite/determine presenters for EPION conference – Aristotle/Jasmyn + any volunteers?
ECHO project planning
Learning objectives – Aristotle, George, Nikki
Youth and Family Advisory
Touch base with Simone/Divya regarding REB needs – Jasmyn
Decide if assessment will be every 3 vs 4 months – Steering Committee
Chat offline regarding logistics, training, and assignment of duties – Aristotle and Simone
Potentially train Jasmyn/Chelsi
Edit Youth and Family ToR to reflect frequency of assessments (when decided) – Jasmyn and Chelsi
Patient Measures and Outcomes
Discuss logistics checklist at Implementation Committee – Jasmyn DONE
Plan site visits – Jasmyn/Chelsi/Aristotle
Durham contract is now being executed (we have one signature)
Dielle will send back to legal and Durham for full execution
The web portal has been updated, and now it is only a password to log in (no more full email login). Hopefully this will make it easier for everyone.
ClinicalTrials.gov registration is complete and public-facing
We need to publish the protocol that we are going to do
Nikki, George, and Aristotle will take the lead
We need to make a corporate authorship as well
People who wrote the grant, people who contributed to the modifications, a few others
We can talk about this on the large team call (May 6th).
We can also have once a month co-investigators call (not everyone needs to join).
Can ask questions, bring forward ideas, etc.
We should set up a standing time - one of the Steering Committee meetings can be replaced by this as we probably don’t need a weekly steering committee meeting. Starting in June, the 1st Wednesday each month is an all-team/investigators call
ECHO learning objectives can be dealt with via email, George and Nikki put a response together from the physician side.
Quick update: Christine accepted new role at Ontario Hospital Association
ECHO hired a new manager, Christine is helping to train her on some roles
Jenny Hardy (sp?) is the new manager for ECHO who will probably take on the planning for EPI-SET
Christine’s last day is May 10th.
May 6th meeting will be both of them.
Someone from PSSP will go to the ECHO planning meetings as well to keep track, and until we fully implement ECHO they can provide the updates at the Implementation Committee meeting and then once ECHO is up and running the ECHO people can rejoin the IC meetings.
EPION has a conference in late fall – symposium deadline is May 21.
We can structure each piece according to each outcome.
1) brief overview (Aristotle), 2) implementation/fidelity, 3) patient outcomes, 4) health administration, 5) youth/family engagement.
These 4 outcomes can each be presented by 2-3 people according to contributions/to help with engagement/to share the credit (mostly people from the Steering Committee).
More of a study design project development, not presenting data.
Aristotle to send note, Jasmyn to help.
People who contributed to the original work will present, it will flow from study start up meeting as well.
Site leads can also be a part of this – on implementation side. Might be worth coordinating (longer part of the presentation? Implementation is proportionately more of the project right now).
Any volunteers? Aristotle might ask specific people to present.
There will be other meetings beyond Toronto in subsequent years as well.
20-21 of November, right down the street.
Youth and Family Engagement/Assessment
The tools are at a point where people find them reasonable (thank you to Lillian and Augustina for your comments!)
A needs assessment,
An evaluation of how well engagement is going,
An evaluation of how patient partners are contributing and helping to inform the direction of the study,
A survey: we will put into redcap, and collect data at specified times – baseline collection will help us understand if the patient partners feel as if there’s something they want more orientation on, etc.
There is also a component for the research team; we want to provide them the tools they feel will help them with patient and family engagement
Ongoing quality/authenticity assessment for patient partner engagement – intended to be formative to give feedback and potentially lead to more training, change in interactions, etc.
Then final evaluation of partnership – engagement and contributions
Divya and Simone finalized the tools – who takes on assessments?
Divya is in year 2 of post-doc and doing a fellowship as well with patient engagement – could be part of what she looks at for her post-doc?
Confirming frequency of assessments:
Need to balance enough measurement points versus the burden in doing them so often
There are different measures as well
3 times total isn’t enough (as currently written in protocol) – we want to know if youth/family don’t feel like they are being engaged throughout so we can strategize and change the direction
For the quick survey at the end of each meeting – we can ask was the meeting clear, were you listened to, do you have suggestions for changes in the meeting?
Also periodic collaboration assessments for the meetings (quick survey after each meeting, then check in every 3-4 months to see if this is meaningful engagement for them)
Then still do full more detailed one at the end of the study as well – and capture this if someone leaves the youth/family advisory committee
Question: what’s best practice in the literature about patient engagement and feedback for long-term studies?
Common to have quick touch base after each meeting (not a ton of literature on the topic), provides an opportunity to say this is going well or not going well, there may be things we aren’t aware of, etc. Might be things specific to that meeting as well
Every 3-4 or 6 months have a periodic one – intended to be formative, to be a more comprehensive assessment of how things are going (balance burden versus making sure we are doing the best job that we can do).
Final one is ultimately for reporting on
PPEET is used more in health services planning, less in research; usually there is a committee that forms, does its job and then dismantles (short period of time) – so we will do the full PPEET at the end
We can also adjust the frequency if people find it burdensome (do less) or we need to get back on track (do more)
Disadvantage of doing a survey after every meeting – gets routine, we need to see how that information is being used, pick up on patterns, etc.
Depends on question structure as well, and framing the survey (e.g. by Jasmyn/Chelsi)
Logistically, we can handle it here on the research team
Aristotle and Simone to chat off line
There is a budget for RA work, or if a student or a post-doc then compensation is usually authorship – we need to decide, and can look for competitions, etc. There’s no fixed approach.
E.g. Paul leads health admin. component but if there’s a post-doc working on that, Paul would find funding to pay for post-doc, but grant will pay for operational parts of the work
If specific needs or help required – can have offline conversation
We can run it through REDCap and have ongoing scientific input – RA will collect and upload data, Divya/Simone could review data regularly, and when it comes to writing up papers then we can see what we end up doing
Need to access data periodically, adjust our approach, etc. Will Simone/Divya do analysis and interpretation of feedback? Could be a benefit of doing it arms-length, then they would be involved in feedback and recommendations
Whatever is best practice – should RA be trained? Send CAMH staff? Give Divya and Simone more of a supervisory scientific role and pay our staff to go up, or have Divya / Simone come down to do training
Try to avoid contracts unless large-scale and absolutely necessary
Post doc or grad student could also apply for an application to CIHR à for Divya
Jasmyn and Chelsi to edit Youth and Family Terms of Reference to reflect frequency of assessments
Patient Measures and Outcomes
Logistics checklist and draft risk management SOP given to PSSP
Jasmyn will discuss it at Implementation Committee after this meeting
This is to try and visualize how patient level recruitment and risk management will happen at each site
It would be good for Jasmyn/Chelsi to go to each site, see the physical layout of the sites, see what the clinic is like, introduce themselves, see logistical needs, etc.
For a day or half day at Niagara, Durham, and North Bay
Can also look at logistics for ECHO calls – we can take another look at the tech/budget doc from Christine.
Physician RDT is mounted in REDCap and ready to be deployed
This will likely happen in the next day or two