Consumer Forums

In November 2022 at our second ACEMID community forum we held an in-person and online discussion with almost 100 consumers and the community about our vision for a targeted melanoma screening program and what new technologies we could incorporate in the future.

The discussion was led by Professor Monika Janda, Professor H. Peter Soyer, Associate Professor Liam Caffery and Ms Montana O’Hara at The University of Queensland. They were also joined by a consumer representative to facilitate the discussions.

The team also shared a progress update on the ACEMID cohort study including recruitment numbers and active sites. The ACEMID study has received over 12,000 expressions of interest to participate across QLD, NSW and VIC. To date, over 2,000 participants had been recruited into the study.

Benefits and harms of screening were discussed. Benefits include reduced severity and morbidity, less invasive treatment, reduced incidence and deaths. Potential barriers include overdiagnosis, overtreatment, false positives, false negatives, the harmful physical and psychological effect of screening tests, and the costs of implementing a nationwide screening program.

The team shared the exciting new technologies they are working on including:

• 3D total-body imaging
• Artificial intelligence
• Diagnostic and remote monitoring apps
• Less invasive diagnostic techniques such as scarless biopsies (tape stripping) and microbiopsy devices. Microbiopsy devices take only a very small amount of skin tissue (leaving a small puncture site) in the skin that heals in days.
• Risk assessment tools (helping us to determine who should be screened and how often).

The forum included an interactive polling session where both online and in-person attendees could respond to the researchers’ questions. Overall, 96% of attendees reported they would participate in a melanoma screening program.

The researchers also asked the attendees hypothetically what would be the main barrier to participating in a melanoma screening program? Some of the top concerns included time off work, costs for treatment and travel costs.

In December 2023, our third ACEMID community forum was held at the University of Sydney. We facilitated an in-person and online  discussion with almost 100 consumers, researchers and the community about our vision for a targeted melanoma screening program and how we can reach the right people at the right time.

The discussion was led by consumer representative Mr Craig Lawn and included speakers Dr Uyen Koh, Professor Monika Janda, and PhD student Gillian Reyes-Marcellino, with the support  of the team of ACEMID researchers at the University of Queensland, Monash University and the University of Sydney.

Dr Koh shared a progress update on the ACEMID cohort study including recruitment numbers and active sites. The ACEMID study has received over 12,000 expressions of interest to participate across Queensland, New South Wales and Victoria. To date, over 5,000 participants have been recruited into the study. To view currently active sites, visit here

Gillian Reyes-Marcellino then provided an overview on the current landscape of skin checks in Australia with data from the National Sun Protection Survey (1). Approximately one third of Australians aged 12–69 years had their skin checked for skin cancer by a doctor within the previous 12-months, and this varied across population sub-groups. Individuals who were associated with higher rates of whole-body skin checks were those of older age, females, people with higher skin sensitivity or fair skin, a higher skin cancer risk perception, higher socio-economic index and higher education. Rates of whole-body skin checks were highest by Queensland residents. Melanomas are currently being diagnosed mainly in primary care settings (general practice). 

Clinical practice guidelines in Australia currently recommend that people become familiar with their skin and seek a skin check by a doctor if they notice any new or changing lesions; however those at very high risk are recommended to have a clinical skin check every 6–12 months.

Professor Janda then discussed exciting new technologies that the research team are working on including 3D-total-body imaging, artificial intelligence, home-based support apps, less invasive diagnostic techniques such as scarless biopsies and improving melanoma risk assessment tools. A combination of these tools could support a national targeted risk-based melanoma screening program in the future.

The forum concluded with an interactive polling session where both online and in-person attendees could respond to the questions. Sixty one per cent of attendees reported checking their melanoma risk using an online assessment tool previously, and 58% reported having their skin checked this year. Overall, 90% of attendees reported knowing their melanoma risk would help them get the right skin check at the right time. If you would like to know your melanoma risk, you can use the online calculators here

The final question asked the audience to share what are some of the main barriers to obtaining a regular skin check with the most mentioned barriers including cost, time, waiting times for appointments, distance required to travel and accessibility to skin check services. 

Reference:

1. Prevalence of skin examination behaviours among Australians over time

In February 2025, the University of Queensland hosted the fourth ACEMID Consumer Workshop, facilitating a hybrid format that accommodated both in-person and online participation. With over 150 consumers and researchers in attendance, the event provided an opportunity to share the latest updates on the ACEMID study with the community and discuss the future directions in skin cancer early detection, particularly the integration of artificial intelligence (AI).

This consumer forum was led by consumer advocate Ms Alison Button-Sloan and included speakers Dr Uyen Koh and Professor Victoria Mar, with the support of the team of ACEMID researchers at the University of Queensland, Monash University and the University of Sydney.

Dr Koh shared a progress update on the ACEMID cohort study including recruitment numbers across the 15 research sites, with 8 of these located in regional/rural/remote areas. The ACEMID study has recruited 7,365 participants across Queensland, New South Wales, and Victoria, with 16,550 visits conducted to date. For a list of currently active sites, please visit here.

Dr Koh provided an overview of the diverse data collected within ACEMID, including 3D total body images, dermoscopy images, pathology reports, saliva samples, digital histopathology slide scans, scarless biopsy samples, clinical data and self-reported survey data. Dr Koh clarified the purpose of the baseline participant questionnaire, explaining that the information gathered was essential for enabling the study team to expand knowledge and explore the associations of factors on the development of skin cancer. Dr Koh reported participant characteristics based on 6,814 baseline visits, with 56% of participants being female with a median age of 57 years (range: 19-97, average age: 56 years). As of January 2025, a total of 448 melanoma diagnoses have been confirmed, including 346 cases of melanoma in situ and 102 cases of invasive melanoma. Additionally, over 900 cases of keratinocyte cancer (non-melanoma or other skin cancer diagnoses) have been confirmed.

Dr Koh highlighted two studies within the ACEMID project, one involving saliva samples and the other focusing on scarless biopsies. The PRiSMM study, led by Dr Courtney Wallingford, aims to investigate the added value of polygenic risk scores beyond traditional risk factors to aid patients in managing their melanoma risk. A total of 95 participants who provided saliva samples were involved in this study. Half of these participants received a booklet of their melanoma risk that incorporated their polygenic risk score determined from the genetic analysis of their saliva sample on top of their clinical and behavioural risk factors. The other half received a booklet of their melanoma risk solely based on their clinical and behavioural risk factors. This study found that the incorporation of polygenic risk scores improved the practical usefulness of the melanoma risk booklets and did not cause any distress to the participants. Interviews with 13 participants revealed that the polygenic risk scores made the melanoma risk booklet more personalised and useful. 

Another study is the scarless biopsy technique, also known as tape stripping. This study collects skin cell samples from the top layer of the skin to analyse specific proteins endeavouring to find protein signatures that can indicate whether a spot is harmless or suspicious. The study is being conducted at three ACEMID sites - Westmead Hospital, Princess Alexandra Hospital, and The Alfred Hospital, with 237 participants enrolled and over 400 samples collected to date.

Dr Koh’s presentation was followed by an active discussion session, with questions focusing on the accuracy of the scarless biopsy technique (tape stripping). Prof Pablo Fernandez-Penas clarified that while the work conducted to date is preliminary there are hopes that the scarless biopsy approach could eventually offer the public a convenient, non-invasive method for obtaining results without the need for multiple doctor visits. Consumers were also curious about whether they could continue their participation in the ACEMID study after the initial 3-year study period. Prof Peter Soyer expressed his willingness to extend participants’ involvement in melanoma research wherever possible, and currently three ACEMID sites, the Princess Alexandra Hospital, The Alfred Hospital, and the Melanoma Institute Australia, are offering a study extension dependent on the availability of study appointment times.

Prof Victoria Mar then delivered an insightful presentation on artificial intelligence and skin cancer, offering an overview of upcoming projects in the field. While the current ACEMID cohort study does not include AI as a component, future research will focus on integrating AI to identify high-risk populations for screening, develop a reliable (and potentially automated) screening test, select appropriate lesions for imaging, and to flag lesions of concern. Prof Mar also highlighted other key achievements including the ACD position statement on the use of AI and a publication in the Journal of the European Academy of Dermatology and Venereology (JEADV) comparing AI apps for skin cancer diagnosis.

The subsequent discussion session focused primarily on the reliability of AI and other biomarkers for non-invasive melanoma detection. Prof Mar shared details of an ongoing sub-study looking at antibodies in blood samples to identify markers of early-stage melanoma. There were also questions about the potential use of circulating tumour DNA (ctDNA) for early melanoma detection, as well as its relationship to the scarless biopsy study. Prof Mar explained the limited value of ctDNA in detecting early-stage melanoma, as the disease burden is insufficient to release significant amounts into the bloodstream. Additionally, Prof Mar clarified that the scarless biopsy study is a separate and distinct research initiative in melanoma detection.