JMIR Publications

ABSTRACT

Background:

Limited data exist on motivations and expectations of participants when enrolling in dermatology clinical trials, including melanoma early detection trials. Understanding participant motivators for research engagement has been identified as a prioritised area for trial methodology research.

Objective:

To determine motivators of participation and expectations from trial involvement among patients enrolled in the MEL-SELF randomised controlled trial of patient-led surveillance for new or recurrent melanoma.

Methods:

The MEL-SELF trial is recruiting patients previously treated for localised melanoma, who own a smartphone, have a partner to assist with skin self-examination (SSE), and attend routinely scheduled follow-up at specialist and primary care skin clinics in Australia. The first 100 randomised participants responded to two open-ended questions about their motivations and expectations for participating in the trial, administered through the online baseline questionnaire. Three coders independently coded the free-text responses and resolved discrepancies via consensus. Qualitative content analysis via an iterative process was used to group responses into themes. Coding and analysis were conducted in Excel.

Results:

Of the 100 survey participants, 98 (98%) answered at least one of the two questions. Overall, responses across the motivation and expectation items indicated three broad themes: community benefit, perceived personal benefit, and trusting relationship with their healthcare provider. The most common motivators for participation related to community benefit. These included progressing medical research, benefitting future melanoma patients who may have similar experiences, and broader altruistic sentiments such as “helping others” or “giving back”. The most common expectations from the trial related to personal benefit. These included perceived improved outcomes such as earlier diagnosis and treatment, access to additional care, and increased self-empowerment to take actions themselves that benefit their health. Patients expressed a desire to gain health-related knowledge and skills and were interested in the potential advantages of teledermatology.

Conclusions:

We report a tailorable, patient-focused approach to identify drivers of research engagement in clinical research. Clinical trials offer an opportunity to collate a substantial evidence base on determinants of research participation, and to identify context-specific factors. Results from the MEL-SELF trial emphasised notable altruism, self-empowerment, and perceived advantages of teledermatology as specific motivators. These findings informed consent processes, recruitment, retention, response to trial tasks and intervention adherence for the MEL-SELF host trial. Clinical Trial: Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000176864