On March 23rd and 24th, 2024, Casper Larsen (Danmark) and Benjamin Löffler (Nävus Netzwerk Deutschland) attended the MELCAYA workshop organized by Melanom Romania (AMER) partner in MELCAYA in collaboration with Melanoma Patient Network Europe (MPNE) on behalf of Naevus Global in Berlin. MELCAYA is the acronym for a European research consortium that stands for Mel anoma in C hildren, A dolescents, and Y oung A dults.
Introduction
The workshop was organized by Melanom Romania (AMER) partner in MELCAYA in collaboration with Melanoma Patient Network Europe (MPNE). It will explore the understanding of the barriers to melanoma care for children, adolescents, and young adults (CAYA) by using design thinking methods and mapping the Patient Journey. The value of new diagnostic technologies and the policy efforts to improve cancer/melanoma care in CAYA will be debated during the Focus Session with the MELCAYA project. Input from our community is valuable. Children with CMN represent a large part of the MELCAYA project.
Mapping the patient journey of Congenital Melanocytic Naevus
Benjamin and Casper have developed a patient journey to explore the challenges and difficulties individuals with Congenital Melanocytic Nevi (CMN) encounter upon the emergence of melanoma, whether it manifests on the skin or in the brain. The variability in each case poses a significant obstacle, compounded by the rarity of the condition, leading to diverse recommendations from healthcare providers. The results of the workshop will be stored digitally.
Policy strategies and ethical issues
Another session explored the existing policy strategies and ethical issues in the early diagnosis and treatment of children and young adults. They wish to influence the regulatory structures of nations to facilitate the reimbursement of emerging AI technologies, ensuring their accessibility to all patients requiring them. They discussed the implementation of artificial intelligence (AI) risk prediction, early detection tools, and their equitable distribution among patients requiring assistance and what concerns may arise.
It was a great experience to start building the melanoma patient journey mapping, which needs to be expanded and more specified with the help of our CMN family.
