Background/Aim
Melanoma consumers have long engaged with researchers to improve patient services, treatments, outcomes, and survivorship. Over time, lived experience and consumer perspectives have become increasingly valued in shaping research priorities. Identical surveys were conducted in 2014 and 2024 to examine melanoma community views on clinical trial attributes and to inform Melanoma Research Victoria’s (MRV) evolving research directions.
Methods
In 2014 and 2024, an identical 11‑question survey was distributed via SurveyMonkey to MRV participants by email or, on request, hard copy. The survey was also emailed to MRV researchers. Question formats included multiple‑choice (n=4), open‑ended (n=2), and ranking questions (n=5). Open‑ended responses were analysed using thematic analysis by three cohort data managers and one consumer representative, with discrepancies resolved by consensus. Quantitative responses were tabulated, graphed, and compared across time points.
Results
A total of 216 responses were received in 2014 and 113 in 2024. Respondents predominantly identified as patients (2014: 93.5%; 2024: 94.7%), with smaller proportions identifying as carers, health professionals, or other roles. The proportion of regional/rural respondents increased from 41.8% in 2014 to 46.5% in 2024. Across both surveys, melanoma clinical trials were consistently regarded as valuable for developing new treatments and improving outcomes and survival. More than half of respondents at both time points reported uncertainty regarding equitable access to trials across Victoria. Approximately half of respondents in both surveys were willing to travel up to five hours to participate in a clinical trial, with varying tolerance for visit frequency. Trial participation rates remained similar, and perceived value remained high: in 2014, 96.2% (median rating “Valuable”); in 2024, 98% (median rating “Very Valuable”).
Conclusion
Over a period of a decade of ongoing clinical trial development, consumers continue to find value in clinical trials. At both time points consumers indicated their willingness to travel substantial distances to participate. However, limited understanding of trial equity, access, and government support persists, highlighting the need for targeted public health education.