Beyond Asking the Doctor: Bringing the Patient Voice Into Clinical Research

Who gets to define what matters to patients in clinical research? Martine Elias, CEO of Myeloma Canada, joins Ursula Mann and Anne-Marie Hayes to explore why meaningful patient involvement must go beyond asking doctors what patients want. From clinical trial design and treatment side effects to access barriers and research priorities, Martine shares how patient organizations connect people, challenge assumptions, and turn lived experience into action. Episode highlights 02:56 — From saving whales to advocating for patients: Martine’s unexpected journey into clinical research and patient advocacy. 04:48 — Taking advocacy to the source: Connecting with international decision-makers to influence research and drug development. 06:00 — Beyond asking the doctor: The conversation that fuelled Martine’s commitment to listening directly to patients. 09:41 — Breaking down silos: Bringing people together to address MRD testing and access in everyday care. 13:01 — Meaningful engagement in trial design: Involving patients in treatment development and data collection decisions. 14:42 — Outcomes that matter to patients: Considering sampling burden, side effects and quality of life. 15:18 — Patients shaping innovation: Advocates contributing to wearable-device selection and testing. 17:12 — Collaboration across cancers: Addressing shared policy and treatment-access barriers. 24:07 — Building an advocacy community: Helping individual advocates connect, learn and strengthen their influence. 27:57 — Listening and empowering: Martine’s approach to leadership and calculated risks. 31:32 — Diverse voices in research: Turning commitments to representation into action. 32:08 — Patient priorities guiding research: Research investment, partnerships and academic CAR-T opportunities. 35:40 — Personalizing patient education: Adapting information to different learning needs. 37:18 — Connection beyond work: Finding community through a book club. Links and resources Myeloma Canada and Science and Research. Myeloma Canada Published study on patient priorities for myeloma research. PMC International Myeloma Foundation. IMF Myeloma Patients Europe. Myeloma Patients Europe Patient Voice Partners