Published on November 14th, 2017 | from CAMH

Patient engagement: More than paint colours

By Lucy Costa, Empowerment Council

‘Patient engagement’ and ‘co-production’ are becoming familiar terms in mental health care. While the shift from engagement to co-production holds the promise of improving care by involving mental health patients in decision making that impacts service delivery, evidence shows the lack of a level playing field means there aren’t always leadership opportunities for service users that go beyond sharing personal stories or choosing paint colours for new spaces. The work of inclusion and engagement isn’t easy; it’s usually uncomfortable and requires service providers to let go of power and control and remain open to alternative viewpoints.

Allowing room for different views and frameworks is how you build trust and foster meaningful change.

Lucy Costa, Empowerment Council

This July, the Empowerment Council – in partnership with Ryerson’s School of Disability Studies – took a positive step towards meaningful change, designing and delivering a six-session, competency-based curriculum for Postgraduate Year One (PGY1) students enrolled in the University of Toronto’s Department of Psychiatry. The pilot project, led by myself and Lauren Munro, a community psychology researcher who has worked with the Empowerment Council on numerous projects, aimed to introduce eight medical students to the voices and experiences of service users; to teach them that the people they will be working with come from an array of backgrounds that require an understanding.

Drawing on our own experiences in the mental health system, and years of combined professional know-how (having engaged with many other service users), we delivered Centering Madness: Building Competencies for Communities.

The introductory sessions offered a range of assignments aiming to advance students’ skill and understanding about the voice and experiences of service users. These classes privileged, protected, and preserved mental health service user knowledge, and incorporated discussions about the importance of understanding intersectionality, First Nations knowledge, critical race, feminist, disability and queer theory. The classes encompassed evaluations from the psychiatric residents, but more importantly, the teachers were able to evaluate the students on the basis of attendance, participation and synthesis of course material into a final presentation. This was unique and pushed the students to learn more and move out of their comfort zones.

“After the class sessions we’ve had thus far, I can recognize paradigms and be more culturally aware when seeing patients; have a more holistic approach to patients,” said one student in their course evaluation. “I feel more open-minded and can identify and challenge assumptions, focusing on the individual needs of service users while providing care,” said another.

It’s been rewarding to see the patient voice recognized in an academic setting, and to have been part of this first-of-its-kind course presented by the Empowerment Council. I look forward to bringing the patient voice back to a full class of U of T residents again in summer 2018!

We are indebted to the trust of U of T Graduate Director Dr. Mark Fefergrad who allowed room for creativity, pedagogical exploration and trust-building throughout this process. And thank you to all of the other advisory members who informed the conversation and understood this key point: to truly involve patients in the process of improving care, they must have access to resources and the opportunity to take on leadership opportunities themselves for their voices to be heard.

More information on patient engagement

As a correlate to this project and to further discussions about power sharing and collaborative engagement within education and the psychiatric profession, the Empowerment Council produced this report entitled More than Paint Colours – A Dialogue about Power in Patient Engagement. It provides a short overview of some of our work, and offers a guide to assist service users and providers who are open and interested in making a commitment to eradicating systemic exclusion.

We hope you enjoy it.

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