Family Advisory Committee: February 20, 2020

Thursday, February 20, 2020


In Attendance: Lillian, Nicolle, Hugh, Laura, Catherine, Ian, Kirstin, Dr. Voineskos


Action Items

· Include the website in the meeting invite and the agenda - Laura

· Send FAC members the link to the e-learning module about psychosis for family members – Laura

· Email the surveys agreed upon by the FAC– Laura

· Find out if a post-basic family education group is a component of NAVIGATE – Laura

· Brainstorm ideas for encouraging clients and family members to participate in research – All FAC members


Welcome to our new members, Ian from Durham and Kirstin from Waterloo Wellington!


Dr. Voineskos Discusses Patient Recruitment


- The study has 4 main outcome measures, and patient level outcomes are just one aspect.

- The first and most important outcome is at the programmatic level, which is fidelity. We measure sites’ fidelity to implementing NAVIGATE, and if there is a solid match to EPI standards already in place in Ontario.

- The second most important outcome is system level outcomes. OHIP is linked to a central Ontario database that includes information like hospital admissions and prescriptions.

- This database is called ICES (Institute for Clinical Evaluative Sciences), and through it you can reliably identify everyone who has had an episode of psychosis.

- Another outcome is patient measures (which involves research visits with participants), but this is the least important outcome as this is not a randomized controlled trial (a study like this already occurred in the US).

- This American study is called the RAISE study, and it showed that NAVIGATE led to improvements in functioning, an outcome that matters a lot to patients and family members

- In order to change a model of care, you have to put a lot of energy into it. It is difficult to effect practice change in healthcare professionals, and hard to ask them to measure what they do as this has not been done traditionally in health care.

- The last important outcome measure is family and youth engagement, which Simone Dahrouge and her team are leading. It involves scales and surveys to measure family and youth engagement in the project.

- For patient measures, we have no comparison group. We are following people over time. The EPI programs at the various sites are committed to implementing NAVIGATE, and we will know how many people receive this model of care.

- More than 200 patients have received care at the first 3 sites.

- For research purposes, we need to consent people at the individual level to agree to symptom measuring.

- Adding the complexity of research is a large request, as we are already asking sites to change their model of care, and some community sites have never done research. We did not want to overload them with research visits at the beginning of implementing a new model of care. Now that sites are more used to the new model of care, we can ask sites to ask patients to participate in video chats with research analysts. That is why recruitment is currently low, new sites will start research visits in approximately June.

- It is important that we listen to the sites, because we don’t want CAMH to seem like a dictator to the community partners, we want them to feel equal.


Dr. Voineskos Discusses Staff Turnover


- When CAMH implemented NAVIGATE, some staff left. However, CAMH has a responsibility to implement care that is evidence based. Clinicians leave because they think that they are delivering the best care on their own.

- Dr. Voineskos believes that the turnover is sort of a good thing. It is stressful, but staff that have stayed are those able to change and who are motivated, and want to implement the latest evidence. It also results in an influx of new, bright people. Many of these issues are normal, as it is all related to change management.

- Site managers are responsible for managing staff performance, and turnover happens regularly anyways. Large changes like implementing a new model of care are a catalyst, they expose who is open to change and who is resistant, exposing strengths and challenges. It would not be easier if we delayed implementing the new model of care, this happens with all clinics who try to do this.

- Hugh mentioned that he has worked in the business sector, where turnover is a make or break situation. He mentioned that we need the system to curate people upfront, and that a selection process might be useful.

- Dr. Voineskos explained that 20% of clinicians are high performers with change, 20% are against change, and 60% go one way or the other in the mental health sector. Organizations have dedicated people in systems that require lots of consistency and fidelity , and you do not want to lose champions.

- Before NAVIGATE was implemented, case management was loose and fluid, and clinicians did what they thought they should. Some clinicians may deliver poor service, but we would not be able to know.

- In mental health things have not traditionally been measured. We have also learned that local context dictates some key factors for success. Small sites are superstars because they are so small, it’s more difficult with more staff. Therefore, we are not surprised that bigger sites like Durham and Niagara have had challenges.


Dr. Voineskos Discusses Family Advisory Committee Contributions


- It would be good for FAC members to review the Strategy for Patient Oriented Research (SPOR) mandate, as it outlines how patients and family members can interact with researchers. He also believes it would be good for the FAC to have regular meetings with the leads of the various outcome measures, and the FAC can decide the right frequency to have these meetings.

- Hugh mentioned that he did not want these meetings to be an information dump, rather he wants the FAC to be able to give advice and direction to the various leads.

- If you ever have any comments or suggestions that come up before or after monthly meetings, feel free to email Laura (laura.grennan@camh.ca)


Next meeting: Thursday, March 12, 2020

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