March 6th, 2020 - Youth Advisory Committee Meeting


In Attendance: Andrea, Augustina, Karleigh, Coulson, Victoria, Sara, Dr. Foussias


ACTION ITEMS


  • Send out a recruitment message through the CAMH Advisory group Slack – Augustina

  • Copy recruitment message to Twitter – Karleigh

  • Share recruitment message with Stella’s Place – Victoria

  • Contribute to YAC Newsletter by March 13th– All Members

  • Share the newsletter design template for YAC members to see – Andrea

  • Follow-up with Dr. Foussias about EPI-SET’s protocol for approaching patients for research and bring it back to YAC for review of the process and wording - Andrea


DECISIONS MADE & SUMMARY OF FEEDBACK


  • The message for the EPION newsletter is ready to be sent out!

  • Clinicians should approach every person with the opportunity for research and leave the door open for future participation; to empower people and reduce stigma

  • Members like that the participant outcome measures also focus on functioning and not just symptoms


MINUTES

Welcome and Icebreaker

  • Welcome to our newest member, Victoria!

  • Icebreaker: what are your plans for the weekend?


YAC Highlights for Newsletter

  • The newsletter will be sent out at the beginning of April

  • Please contribute any edits by March 13th and log your hours

  • Also interested in design, so Andrea will share the newsletter template, keeping in mind that the design is limited by the program that allows the newsletter to be formatted for email distribution


Finalize EPION Mailing List Messaage

  • The message looks good, short and sweet

  • We would like to keep it circulating on the newsletter for a couple of months

  • We would also like to get it out through CAMH youth social media – Karleigh/Augustina

Decide on Final eLearning Course Names

  • Mental health community is moving forward from using terminology of Recovery

  • Discussed what “Recovery” may mean (having tools and resources)

  • Alternative to using “Recovery” could be “Living with Symptoms”

  • To make an informed decision, members would like to see course summaries

o Did not make decisions during this meeting due to insufficient information

  • This decision goes beyond the word, want to reduce stigma

Discuss Experiences at Project Team meeting and Using Slack

  • Even with the Slack group, from a YAC member perspective, it is still too hard to understand what is going on and feels like a waste of resources to be in attendance

  • Thankful for this feedback! It is important so the Project Team has a better understanding of your experience in this role

  • Please feel free to provide this feedback when completing surveys as well!

Dr. George Foussias and Patient Measures

About Dr. Foussias

  • Dr. Foussias is a Psychiatrist and Medical Head/Co-Director of Slaight Centre

  • Was involved in training CAMH clinicians to deliver NAVIGATE

  • Also does research in virtual reality based care for motivation difficulties

  • Is measuring how staff are delivering NAVIGATE, and how clients are doing over time.

  • Q: Why did you decide to study psychiatry?

o Raised in family of psychiatrists and spent time around their workplace as a kid

o Fascinated by the brain and the way we experience the world

o Drawn to this area of medicine when he worked at in-patient unit at Dalhousie

o Enjoys helping patients convey their experience in non-stigmatizing way because we are all shaped by our experiences and view the world a little differently

About EPI-SET and Participant Outcomes

  • Dr. Foussias leads one of the four aims of EPI-SET: participant outcomes

  • The 4 Major Outcomes for EPI-SET:

1. Is the clinical team able to effectively deliver the NAVIGATE model of care?

2. Does NAVIGATE influence system outcomes like hospitalizations?

3. Can EPI-SET engage family and patient groups as part of the research team?

4. How are patients affected by this model of care? (Dr. Foussias leads this part)

  • We need to measure symptoms so we can compare how things are here in Ontario with the U.S.

  • Participants also self-report their experience with functioning and meaningful parts of life

  • The Family Advisory Committee asked the study team to include family members ratings in rating how a participant is functioning

  • Main participant outcome: how the person is functioning, but not limited to symptoms

  • Patients are able to develop ways to work with symptoms to better function in their lives, so not just about symptoms

  • We are trying to coordinate the best care to promote engagement in meaningful activities since sometimes symptoms don’t go away entirely

  • Patients can continue to do well and have meaningful relationships even though they continue to have symptoms

  • Major focus of this work is on functioning piece

  • Feedback: YAC members like that we are not focusing on curing symptoms but getting people involved in meaningful activities

  • NAVIGATE focuses on building strengths to help individual and family move forward.

YAC Feedback on Approaching Patients for Research

  • Dr. Foussias asked for feedback on how the study team can communicate with clinical team that research is an opportunity that should be presented to people.

  • This can be challenging for clinicians at some of our study sites who are not normally involved in research

  • Overall Feedback:

o This is more than just about research but it is an empowering opportunity that this is where you get your say and what your opinions are

o Giving ability for everyone to have that voice

o Every participant should be given the opportunity – it is a way to avoid stigma

o A client’s inclination to take part in things can fluctuate depending on medications and other factors, so the door to participate should always be open.

o Ask at different time points (not at their first visit) in a respectful way.

o Approach every person instead of assuming their capacity because they are experiencing mental illness. Usually it is assumed that psychosis = lack of capacity.

o How to convey the value of this to clinicians? See it as a way to empower people

o Approach every person in a meaningful way with no coercion, as youth want opportunities to participate


  • What the process looks like:

o The clinician will see the patient at their appointment

o The clinician tells the patient that there is a research opportunity, and if they are interested in hearing more about the study, a member of the research team will contact them

o The clinician does not do the research portion with the patient, and would continue on with the visit

o We rely on clinicians to present the research opportunity to patients


  • Research Idea: it would be interesting for YAC to develop a process for approaching participants at CAMH and get their feedback on how they felt, could write a paper on it and turn it into best practices for enrolled patients with mental health into research studies

  • Research ethics guidelines like the Tri-Council Policy Statement do not speak a lot about mental illness/mental health

  • It would be very helpful to do research into best practices of people with mental health signing up to participate in studies


Summary of Recommendations: it is important to ask, leave door open, don’t make assumptions.

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