Including patients and carers as contributors—not just participants—in a medicinal cannabis clinical trial for cancer anorexia improved study design, recruitment, and alignment with real patient needs.
Clinical trial designers, patient advocacy organizations, cannabis researchers, and regulatory bodies that require patient engagement in research.
What the researchers found
Clinical trials are typically designed by researchers for patients. This paper describes what happened when patients and carers were included as active contributors in designing and conducting a Phase I/IIb cannabis trial for cancer-related anorexia.
Consumer contribution came through five channels: lived experience (understanding what matters to patients), knowledge (what cannabis means to them and their communities), inclusion as investigators (formal research team roles), advocacy (representing patient perspectives in ethical and regulatory discussions), and outreach (connecting the trial to the broader patient community).
The authors argue this consumer contribution did more than check a patient-engagement box. It shaped study design decisions in ways that researchers alone wouldn't have achieved, ensured the trial was practically feasible (addressing barriers researchers didn't anticipate), and will guide future dissemination of results in ways that reach the people who need them.
Medial cannabis trials in palliative care face unique challenges: patients are seriously ill, cannabis carries legal and social complexity, and many participants have strong pre-existing opinions about cannabis. Consumer input helped navigate all of these challenges.
The paper also considers how to mitigate bias when including consumers—ensuring their contribution enhances rather than distorts the research process.
Why it matters
Patient-centered research is a growing movement, but cannabis trials face unique challenges that make consumer input especially valuable. Patients know things researchers don't—about cannabis stigma, about what matters in end-of-life care, about practical barriers to participation. This case report provides a model for other cannabis research teams.
The numbers in context
5 domains of consumer contribution identified. Phase I/IIb trial for cancer anorexia. Consumers included as investigators on the research team.
How the study worked
Case report on consumer contribution in a Phase I/IIb medicinal cannabis clinical trial for anorexia in advanced cancer (ACTRN12616000516482). Describes five domains of consumer contribution: lived experience, knowledge, investigator inclusion, advocacy, and outreach.
Who was studied
Case report on consumer contributions in a medicinal cannabis clinical trial for anorexia in advanced cancer patients.
What this study cannot tell us
Single case report from one trial—the model may not transfer directly to other contexts. The benefits of consumer contribution are described qualitatively without quantitative metrics. Selection of consumer contributors may not represent all patient perspectives. The trial was in palliative care (advanced cancer), which involves unique considerations not present in other cannabis research populations.
How to read the evidence
Case report on research methodology—provides a practical model but doesn't generate clinical efficacy data.
When this study was published
Published in 2025, reflecting the growing emphasis on patient-centered research design.
The bigger picture
This is the design-side companion to RTHC-00177's qualitative findings from the same trial (which captured patient experiences with vaporized cannabis for appetite). Together, they demonstrate that including patients throughout the research process—from design through experience through dissemination—produces richer and more relevant evidence than the standard approach of designing a trial and then recruiting subjects.
Replication
Not stated in abstract.
Funding
Not reported in abstract.
Conflicts of interest
Not reported in abstract.
Questions still open
- How should consumer contributors be selected to ensure diverse perspectives? Can this model scale to large multi-center trials? Does consumer contribution change trial outcomes, or primarily improve process and recruitment?
Read the original research
Consumer Contribution in Designing Medicinal Cannabis Clinical Trials in Palliative Medicine.
Journal of palliative medicine, 28(8), 1128-1133
The Journal of Palliative Medicine is a reputable source focusing on research and practice in palliative care.
Citation
Razmovski-Naumovski, Valentina; Noble, Beverly; Brown, Linda; Agar, Meera R. (2025). Consumer Contribution in Designing Medicinal Cannabis Clinical Trials in Palliative Medicine.. Journal of palliative medicine, 28(8), 1128-1133. https://doi.org/10.1089/jpm.2024.0422
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