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Why Medication Standards Must Reflect Real Patient Lives: the Thyroid Foundation’s Input to HSO CAN/HSO 3001:2025 |
September 2025
Last month, the Thyroid Foundation of Canada (TFC) submitted a formal patient group input to the Health Standards Organization (HSO) draft national standard on Medication Management: CAN/HSO 3001:2025.
Medication management is more than prescription accuracy. For people living with thyroid disease and other chronic conditions, it’s about navigating lifelong adjustments, sometimes treatment inconsistencies, and fragmented care as well. That is why we contributed to this national consultation, and this is why our community’s lived experience must shape the way health services are delivered in Canada.
Why We Participated
People living with thyroid disorders often rely on daily medications like levothyroxine, liothyronine, or desiccated thyroid extract for life. These aren’t static prescriptions. They require continual titration, careful monitoring, and informed decision-making between patients and providers. Yet too often, these nuances are missed in system-wide medication protocols.
We saw HSO’s draft standard as an important opportunity to advocate for clearer, more patient-centred guidance that supports the real-world complexity of chronic care. We engaged directly with our community, reviewed insights from recent clinical webinars, and drew on years of helpline calls to inform our feedback.
What We Shared
In our submission, TFC urged HSO to address key gaps in the draft standard:
- Complex dose adjustments: Hormone therapies for thyroid patients often need lifelong, nuanced titration. Mismanagement can cause lasting harm.
- Variability across brands and compounded meds: Switching between branded, generic, or compounded thyroid medications isn’t always seamless. Patients often report changes in symptom control and may need re-testing.
- Transitions of care: Many patients experience disruptions when moving between specialists, primary care, or pharmacy. Continuity protocols must be strengthened.
- Patient confusion and lab interference: Medications or supplements like biotin can distort thyroid test results. Clinicians and patients need clearer communication around these risks.
- Plain language and shared decision-making: Medication reconciliation, therapeutic alternatives, and informed consent need to be explained in patient-friendly terms, not just clinical jargon.
We also recommended the inclusion of patient-reported outcome tools (PROMs), such as symptom tracking logs, to support real-time treatment adjustments and patient involvement in care.
What Happens Next
HSO is currently reviewing all public input. While we await the next version of the standard, our hope is that it will better reflect the daily realities of those managing complex, chronic medication needs—not just for thyroid patients, but for all Canadians navigating long-term treatments.
TFC remains committed to shaping patient-centred health policy and standards through active participation, credible insight, and community-informed advocacy.
Want to learn more about the standard?
Read about the HSO Draft Standard: https://healthstandards.org/public-reviews/medication-management/
Questions or comments? Contact us at info@thyroid.ca.
