Democratic patient-led councils, the rise of patient engagement, and the erosion of advocacy - with Lucy Costa

Patient engagement is often loosely described as adhering to democratic principles even though, as we discussed in Dilemmas of Representation, there is rarely an election apparatus to support it. We thought it would be interesting to learn more about patient-led organizations that democratically elect who speaks and acts on their community’s behalf.  

The Empowerment Council is a mental health service user advocacy organization funded by the Centre for Addiction and Mental Health in Toronto. In this episode, we speak with Lucy Costa, Deputy Executive Director, to learn more about patient councils, to understand how democratic patient-led organizations decide what to advocate for, and to find out where advocacy and engagement intersect. 

This is a rich conversation that also explores the differences between advocacy and engagement. Lucy provides compelling testimony that there is pressure on patient councils to shift away from advocacy towards engagement, which, in her view, compromises their ability to push for system change. 

[download transcript]

Mentioned in this episode:

• Empowerment Council, a voice for the client of Centre for Addiction and Mental Health
• Peat, Marwick & Partners. (1982). Queen Street Mental Health Centre: An operational and organizational review.  (Not widely available but can be accessed through the Toronto Reference Library.)
• Legislative Assembly of Ontario, Hansard debate, March 29 1982. Extensive discussion of the findings in the Peat Marwick report.

Lucy Costa on Twitter