Over the last half century, clinicians and researchers have made enormous advances in detecting and treating melanoma.
From the development of simple and widely usable clinical checklists to dermoscopy to 3D whole body imaging to artificial intelligence algorithms, and from operations to chemotherapy to today’s targeted therapies and immunotherapies, new discoveries have helped detect melanomas early, when they are most easily treated, and improved the outlook for those with advanced melanoma. The common element in all these advances is clinical data: images, histopathology results and information from clinicians and patients alike who have generously donated their time, experience, and knowledge.
Clinical data can be collected piecemeal from case reports of unusual clinical cases, but to be most effective data needs to be collected in carefully designed cross-sectional or longitudinal studies. These studies must incorporate enough participants for meaningful statistical analysis, otherwise results may be unreliable. Standardised data collection protocols allow comparisons between participants and well-designed data management procedures ensure that the information can be used effectively, even when the original collectors leave the research group, or by other research groups with new research perspectives that could be tested on previously collected data.
A wide variety of data can be collected in clinical trials: personal and family medical history, number and size of moles, how easily the person sunburns, outdoor work or leisure pursuits, and the fine details of a previous melanoma, including exact anatomic location, can all prove useful to researchers. Checking for links between the different types of data can also reveal surprising information. An unexpected finding from one of our studies is that Australian men with both many moles and two dysfunctional copies of the red hair gene have an enormous 23% lifetime risk of melanoma. Based on previous knowledge, we expected them to have a 9% risk. This knowledge helps us to prioritise these people for careful screening to detect their melanomas early. It also gives us insight into the mechanisms of melanoma development, which may ultimately help us to prevent melanoma altogether.
However, before any data can be collected, researchers must consider ethical clearance and informed participant consent. Universities and research hospitals provide Human Research Ethics Committees that include legal experts and volunteers not otherwise affiliated with research or the institution for a true outside perspective. They consider aims, proposed methods, and how the privacy of participants will be protected. It’s not enough to just be curious about something – there must be at least a potential benefit to melanoma patients to participate in research. It’s also important that participants understand what they are signing up for and be able to both consent and withdraw freely. Patient volunteers are our most precious asset, and their time, comfort and privacy are essential considerations to any clinical data collection.