Co-designing a study on perspectives toward pharmacogenomic testing in mental health care among youth and caregivers

AIMS: Finding suitable psychotropic medications can be a lengthy trial-and-error process, leading to poor symptom control, low adherence, and treatment failure. Pharmacogenomic (PGx) testing can help inform prescribing considerations for some individuals. As PGx becomes more common in Canada, understanding patients' and families' hopes, expectations, and concerns is vital. MATERIALS AND METHODS: This article details our work engaging two advisory councils comprised of five youth with lived/living experience of mental health challenges and five caregivers across four videoconferencing sessions (between June 2025 and February 2026) aimed at co-designing a qualitative study on perceptions of PGx testing for psychotropic medication prescribing among youth and caregivers. Verbal and written input was gathered from council members and incorporated using iterative feedback cycles. RESULTS: The advisory councils challenged our assumptions and ensured the study design aligned with their lived-experience perspectives. Some suggestions differed between youth and caregiver advisors. Impacts included changes to eligibility criteria, flexible participation options to promote accessibility, and the use of inclusive language in study materials. CONCLUSIONS: We recommend that future PGx research actively involves those with lived/living experience to ensure the field is shaped by those it aims to serve.