ACEMID is regularly engaged with consumers through Community & Consumer Forums.
Community & Consumer forums allow ACEMID researchers to update the public on their research progress and gather information that informs their research directions.
You can read more about each of the ACEMID Consumer & Community forums below.
Consumer Forum 1: Skin cancer photography: consent & protecting your privacy
3D total-body photography for the early detection of melanoma involves photographing the whole body to track spots and moles over time.
At our first ACEMID community forum in March 2022 we held an online discussion with consumers and the community about how concerns regarding privacy of images should be handled.
This discussion was led by Associate Professor Liam Caffery and the team of melanoma researchers at The University of Queensland.
At the forum we presented hypothetical scenarios about how images could potentially be used. For example, 3D images can be used for conducting scientific research, artificial intelligence development, teaching or for a patient’s own clinical care.
In online polls and discussion we asked attendees if they were comfortable to consent to sharing 3D total-body images for various research, teaching and medical scenarios.
You can read the results in the article published in the Australasian Journal of Dermatology here.
Consumer Forum 2: The future of melanoma screening
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.
Consumer Forum 3: Skin Checks in Australia - How do we reach the right people at the right time?
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.
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