The Centre of Research Excellence for the Study of Naevi engaged with consumers through Consumer Forums.
Consumer forums, held in conjunction with the Cancer Council Queensland and Melanoma Patients Australia, allowed the CRE researchers to gather information that informs their research.
Forum 1: Skin Awareness in the Community
Held in conjunction with the CRE Launch at the Translational Research Centre, this first consumer forum (26 April 2016) focused on skin cancer awareness in the community.
Reflections
Being aware of our skin and risk of skin cancer is important in skin cancer prevention and detection. The first CRE consumer forum focused on obtaining the perspectives of consumers on awareness of skin cancer and prevention.
There was consensus in the room that there is little awareness in the community about the importance of early skin cancer detection. It seems that there is a misconception in the general population that skin cancers, such as melanoma is not as “severe” as other cancers as it can be “just cut out of the skin.” Furthermore, the consumers had the view that people were not aware that melanoma can happen at any age and believe it is not something that is at the forefront of a young person’s mind. In particular, it was perceived that the community are not aware of how to detect melanoma. They believed that being at high risk of cancer means that it is more important to get your skin checked. However, many consumers had the view that people are not aware of what constitutes as high risk for melanoma, such as certain phenotypic characteristics and family history of skin cancer. Other common misconception in the community raised by the consumers was that sun exposure was the only cause of melanoma and that sunscreen can guarantee skin cancer prevention. From this consumer forum, the CRE team identified many opportunitiesto raise the awareness of skin cancer risk, prevention methods and early detection.
Forum 2: Skin checks
This forum (15 September 2016) was led by CRE Researcher in Residence, Associate Professor Lois Loescher. The Skin Check forum centre around Partner-Assisted Skin Examination.
Reflections
Thoroughly checking our skin for new and changing moles helps to identify skin cancer earlier, which can improve prognosis. At this consumer forum we wanted to seek the views and reflections of consumers on skin selfexaminations and partner-assisted skin examinations.
Most of the consumers conducted skin self-examinations, some conducted them every few months, and one person even conducted them every day. The consumers were comfortable to have others assist them with their skin checks. This was particularly important to check areas that were difficult to see; for example, the scalp and back. Some ask their hairdresser to check for moles on their scalp or their manicurist to check the moles on their hands. Consumers brought up the issue of not finding it easy to identify changes in moles and hence visit their general practitioner or dermatologist on a regular basis. Most found it useful to leave reminders on their mobile phone or calendar to ensure they do not forget to conduct skin checks. Consumers believe it is usually someone else, in particular their spouse who would notice changes in moles. They also reported however, that their doctor valued their input from skin self-examinations. This forum was very useful for CRE investigators as it clearly highlighted how to improve the information materials for consumers on skin examinations.
Download Partner-assisted skin self-examination slides (PDF, 401.9 KB)
Forum 3: Algorithms and robots, will they play a role in melanoma early detection?
Professor Allan Halpern, Chief Dermatologist and Internal Medicine specialist from Memorial Sloan Kettering Cancer Center, New York, was our CRE researcher in residence in 2017.
This forum (18 October 2017) was held at the Cancer Council Queensland, ahead of the World Congress of Melanoma.
Professor Halpern presented data to show that up to 70% of melanomas are first noticed by the person themselves. It is therefore important that people are vigilant to changes on their body.
A fine line between under- and over-diagnosis
Dermatology is a medical specialty that relies heavily on the visual assessment of skin lesions. Although there are some rules such as the ABCD rule that can help determine whether a skin lesion is a skin cancer, definite diagnosis is often difficult without pathology.
Professor Halpern state that there is a fine line between under- and over-diagnosis. The risk of underdiagnosis can be dire; hence some medical practitioners take the over-cautious route as missing a melanoma would lead to unforgiving consequences. Sometimes lesions that are removed are not suspicious causing frustration for the patient. On the other hand, over-diagnosis can lead to patients feeling like they are “Swiss cheese.” The decision to excise a skin lesion should involve the medical practitioner’s expertise and the concerns of the patient.
Using technology for the prevention and early detection of skin cancer
There seems to be a shift towards a reliance on mobile phones in the dermatology field. Mobile teledermoscopy is a promising new technology for engaging people in the prevention, detection and management of skin cancer. Mobile teledermoscopy uses a smartphone, mobile health application (app) and detachable dermatoscope to magnify and photograph skin lesions to remotely send to a skin cancer specialist or dermatologist. The medical practitioner then diagnoses the lesion using the images.
Artificial intelligence is another up and coming technology which uses algorithms to calculate diagnoses. Using algorithms to diagnose skin lesions is an exciting area of research. Some concerns have been raised about the accuracy and over-reliance on technology. In particular, corporate stakes in these exciting technological advances are high, and this may lead to over-enthusiastic promotion of technology before it is really ready for the clinic.
Forum 4: Melanoma genomics
Dr Aideen McInerney-Leo led the Melanoma Genomics Forum (19 September 2018), along with melanoma researcher Dr Mitchell Stark and Dermatologist, Dr Erin McMeniman.
The Role of Genetics and Phenotypic Characteristics in Melanoma Development
At our last CRE consumer forum in September, we presented information on genes and phenotypic traits that increase the risk of developing melanoma. Consumers were particularly engaged in this topic as they were concerned about the role of their genes impacting their children and grandchildren in regards to melanoma. Many attendees at the forum were interested in understanding how they can best protect their family from developing melanoma, considering that they personally have been diagnosed with melanoma. Genetic screening was discussed and how to use this information to reduce the risk of melanoma. The implications of genetic testing on private health insurance or life insurance cover was also hotly debated. Some consumers were concerned about undergoing genetic testing for melanoma as it may impact the level of cover and cost of their private health insurance and also in the future for their children.
Sun Exposure and Melanoma
Consumers were aware that sun exposure can increase the risk of developing melanoma. However, many noted that from personal experience their melanoma developed on body areas rarely or never exposed to the sun. This resulted in a lively discussion on whether sun exposure played a significant role in developing melanoma. Exposure to UV radiation can damage the skin and increase the risk of developing melanoma. However, like most other illnesses, sun exposure is not the only risk factor for melanoma. Other factors associated with melanoma include family history, genes and the number of naevi (or moles) on your skin. Thus melanoma can occur anywhere on the body, not just areas that are exposed to sunlight.
Forum 5: Cancer prevention - what has psychology got to do with it?
Associate Professor Samuel Smith, University of Leeds, led the discussion (16 October 2019) which will help to inform future research.
Cancer prevention: What has psychology got to do with it?
Our last consumer forum was held on the 16th October 2019, discussing the psychological issues surrounding cancer prevention. Guest speaker Associate Professor Samuel Smith from the University of Leeds Institute of Health Sciences presented on the topic “Cancer prevention: What has psychology got to do with it?” In his talk, Dr Smith highlighted the importance of considering how we approach introducing prevention and early detection tests to the people who should use them, and the need to ensure these tests and procedures are acceptable to the community. As oral medications are becoming more commonly used in cancer treatment, Dr Smith also reflected on psychological factors that may impact treatment adherence and thus the effectiveness of these medications.
Screening for the prevention and early detection of skin cancer
Consumers were highly engaged in the discussion and asked a range of questions focused on the importance of early detection of melanoma and other skin cancers. Examples of topics covered included: how often should you have routine skin checks; how do we know if melanoma runs in the family (genetic susceptibility); does melanoma occur with similar frequency on all body sites, or is there a difference by gender and age; do survival rates vary between different types of melanoma; are some melanomas more aggressive than others; whether melanomas commonly come back at previous excision sites; and how the use of artificial intelligence can be used to increase the precision of melanoma early diagnosis.
Consumers were also particularly interested in the use of teledermatology for melanoma screening and early detection. The concept of using tele-diagnostic methods for skin surveillance was well accepted by consumers, however several participants shared they lacked confidence in their own ability to identify the correct suspicious or changing lesions when conducting a skin self-examination. Consumers thought apps with artificial intelligence algorithms that told them whether or not a lesion they selected was anything to worry about would be good to have; and they also wanted apps that helped them to keep track of lesions over time. In addition, consumers felt GPs require better education and training in skin cancer early detection and voiced concerns about the out-of-pocket costs associated with detection and treatment of melanoma and keratinocyte cancers, which was often very costly especially if multiple lesions needed treatment.
Finally, consumers also shared their ideal vision of what a skin check would look like. This involved the concept of a booth, similar to the VECTRA machine, but smaller, anonymous, quick, and easy to reach with instant results. Overall, this forum was very useful for CRE investigators as it helped to develop a better understanding of the psycho-social, behavioural and economic impacts of the detection of melanoma and other skin cancers, and clearly highlighted the support of consumers towards the use of modern digital health technology advances to enhance their experience.
Forum 6: Artificial intelligence in dermatology - how, where, and when?
Dr Veronica Rotemberg, Consultant Dermatologist at Memorial Sloan Kettering Cancer Center, New York, and co-chair of the 2020 International Skin Imaging Collaboration (ISIC) Challenge, led the discussion (20 November 2020) which will help to inform future research.
AI in dermatology: how, where, and when?
On the 20th November 2020 the Centre of Research Excellence for the Study of Naevi held a Melanoma Community Forum via webinar. Guest speaker Dr Victoria Rotemberg, an innovative dermatologist from Memorial Sloan Kettering Cancer Center in New York, presented on the topic “AI in dermatology: how, where, and when?” In her talk, Dr Rotemberg provided great insight on the use of artificial intelligence (AI) for diagnostic imaging and shared exciting results from the 2020 International Skin Imaging Collaboration (ISIC) Melanoma Classification Challenge.
The 2020 ISIC Challenge was an international collaboration with multiple international universities and research institutions in New York, Vienna, Barcelona, Athens, Brisbane and Sydney. Each institution submitted dermoscopic images of skin lesions with the aim of creating the world’s largest publically available collection of quality controlled images of skin lesions. The UQ Dermatology Research Centre contributed over 37,000 non-identifiable lesion images from 448 participants in the Changing Naevi Study, Mind Your Moles, and the Health Outcomes Program (HOPs) study who consented to share their non-identifiable images. The 2020 ISIC Challenge data set will be used to develop and improve machine-learning algorithms for melanoma detection and early diagnosis.
How do we want to use AI in dermatology in the future?
As part of her presentation, Dr Rotemberg reflected upon the potential for human-AI collaboration, and discussed some of the remaining challenges for translating AI into clinical dermatology practice. Examples of these challenges include identifying the most appropriate users of AI for skin cancer screening (e.g. patients, general practitioners, dermatologists), as well as the kind of criteria we would need to encourage adoption (e.g. improved sensitivity). In addition, Dr Rotemberg eloquently highlighted we need to optimise the use of AI through two key areas which will benefit patients. These two areas are: i) improving the detection of melanomas missed by clinicians; and ii) decreasing the number of unnecessary procedures and excisions of benign lesions.
Consumers were highly engaged in the discussion and asked a range of questions centred on how we will be able to use AI in dermatology in the future. Examples of topics covered included: how soon can we expect both 3D total body photography and AI to become part of regular clinical practice; how well will AI cope with identifying amelanotic melanomas; have any AI algorithms been approved by the FDA or TGA yet; are dermatologists embracing the role of AI or are they fearful of the new technology; how could we use AI in ways other than diagnosis, for example monitoring skin rashes for automatic detection of change; and will 3D total body photography and associated AI technology be available in public hospital settings.
Overall, this community forum was highly useful for the CRE investigators as it helped to develop a better understanding of the questions consumers have about the use of AI for skin cancer screening in particular and dermatology in general, and clearly highlighted their interest in the use of the new technology.