Case study 03 · Patient access & transparency
Moving the conversation about clinical notes beyond portal access toward dignity, understanding and shared power.
Context
Patients often have limited or inconsistent access to the clinical notes written about them. Even when notes are available, they may be incomplete, difficult to understand or written in stigmatizing language.
In mental health care, where notes can contain especially sensitive information, experiences of stigma, dismissal or trauma can make transparency central to trust.
Emily's role
Emily contributed as a CAMH patient advisor, lived-experience collaborator, co-author and speaker. She brought the perspective of someone navigating complex care and helped turn broad questions about transparency into practical, real-world concerns.
Collaborative process
Emily worked as a thought partner with CAMH's Digital Mental Health Lab, researchers, clinicians and other patient advisors. Lived experience was used to ask different questions, identify risks and inform testimonial and knowledge-mobilization materials—not simply to endorse decisions already made.
Contribution
Output
The work contributed to a practical implementation toolkit for clinicians in Canadian mental-health settings, patient testimonials, public presentations and writing that connects note access with inclusive communication.
Impact
Continue through the work
Bringing patient perspective to national health care improvement decisions.
Explore →Work & impactReturn to the complete project collection.
Explore →CollaborationTalk with Emily about advisory, writing or speaking work.
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