PP74 Challenges And Potential Improvements In Policy Strategies For Prevention And Early Diagnosis Of Childhood Melanoma - A Patient Perspective - Key findings and patient-focused policy actions

Sep 29, 2026

Uploaded by Riley

Focus session results identify key obstacles and actionable improvements for policy strategies supporting prevention and early diagnosis of childhood, adolescent, and young adult melanoma across Europe. Fifteen participants from seven countries discussed care fragmentation, low public awareness, ineffective communication with younger generations, and difficulties navigating healthcare systems. Patient advocates contributed inputs to assess and refine policy strategies drawn from National Cancer Control Plans, leading to proposed additional strategies and integration actions for national implementation.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages1

Reading Time3 min

AccessFree to download

Introduction

Methods

Results

Conclusions

PP74 Challenges And Potential Improvements In Policy Strategies For Prevention And Early Diagnosis Of Childhood Melanoma: A Patient Perspective Sonia Muñoz-López ([munoz6@recerca.clinic.cat](munoz6@recerca.clinic.cat)), Paula Closa, Pietro Refolo, Costanza Raimondi, Violeta Astratinei, Bettina Ryll, Joan Prades, Dario Sacchini, Josep Maria Borràs and Laura Sampietro-Colom Introduction: To design healthcare system strategies to inform policy decisions in prevention and early diagnosis of melanoma in children, adolescents, and young adults (CAYA) in Europe, a patient perspective is needed. The MELCAYA project addresses this issue, since this disease lacks preventive and diagnostic strategies. A focus session was conducted to identify challenges and potential improvements in current policies on rare cancers. Methods: The focus session involved 15 participants, including patients, caregivers, patient advocates, and healthcare professionals from seven European countries. This session explored, through open discussions, challenges in melanoma prevention and early diagnosis as well as the role of patient advocates in policy development and implementation. Furthermore, a group dynamic was carried out to collect patients’ insights on 20 policy strategies from National Cancer Control Plans (NCCP), which were categorized into three areas:(i) early diagnosis and symptom awareness; (ii) health promotion and ultraviolet radiation prevention; and (iii) precision medicine and genetic counseling. Participants provided insights by identifying lacking policies and proposing actions for their implementation. Results: Key challenges in melanoma prevention and early diagnosis include: (i) low awareness and education among the general population and a misconception about its severity; (ii) fragmented care in the patient journey from diagnosis to treatment; (iii) ineffective communication with younger generations; and (iv) difficulties on how to navigate through the healthcare systems. Participants proposed 18 additional potential strategies to the NCCP and 22 actions for policy integration into healthcare systems. The current ad hoc approach fails to fully leverage contributions from advocates and healthcare professionals, often resulting in policies misaligned with clinical realities and patient needs. Conclusions: This focus session provided patient ideas for policy initiatives, identified gaps in current policies from the NCPP, and emphasized the need for improved awareness, education, and communication strategies. Patient involvement in policy development, ina more structured way, is crucial for creating effective strategies, and its integration into healthcare systems could enhance melanoma prevention and early diagnosis in CAYA populations. PP75 Empowering Laypeople In Health Technology Assessment Through Gamification: The PARTICIPA SUS/ATS Project Quenia Cristina Dias Morais ([qcdias@gmail.com](qcdias@gmail.com)), Marcelo Goulart, Dominique Spada, Milene Costa, Bruno Barros, Andressa Braga and Marisa Santos Introduction: Patient involvement is a cornerstone of the Brazilian Unified Health System (SUS), legitimizing decisions on the reimbursement of new health technologies. However, the complexity of these processes hinders public engagement. To overcome this, the Participa SUS/ATS project developed a gamified digital platform to educate laypeople about health technology assessment (HTA), empowering them with knowledge to engage effectively in public consultations. Methods: The platform has individualized access and comprises ten modules of educational videos and interactive games. Joana, a fictional SUS user, embarks on a journey reflecting common patient experiences, learning about the health system, HTA, and technology reimbursement processes. Content was informed by research into challenges faced by patient associations and validated through online questionnaires with pilot users. Videos used simplified language, illustra

FAQs

Who participated in the focus session and what was its purpose?

The focus session included 15 participants—patients, caregivers, patient advocates, and healthcare professionals—from seven European countries. It aimed to identify challenges and potential improvements in current policies for melanoma prevention and early diagnosis from a patient perspective.

What challenges were highlighted for prevention and early diagnosis?

Key challenges included low general-population awareness and misconceptions about severity, fragmented care across the patient journey, ineffective communication with younger generations, and difficulties navigating healthcare systems.

How did participants propose improvements to policy strategies?

Participants identified gaps and proposed actions based on 20 policy strategies from National Cancer Control Plans, categorized into early diagnosis and symptom awareness, UV prevention and health promotion, and precision medicine and genetic counseling.

Sep 29, 2026

Uploaded by Riley