Share Your Experience: Take Part in the Patient Self-Ethnography Survey

As part of the MELCAYA project’s ongoing commitment to advancing patient-centred melanoma research, we are pleased to launch a new self-ethnography survey developed under Task 9.3 in collaboration with our partners at Melanom Romania Association (AMeR) and at Melanoma Patient Network Europe (MPNE).

The survey focuses on children, adolescents and young adults (CAYA) diagnosed with melanoma between the ages of 0 and 39. Its purpose is to better understand the real-life experiences of patients throughout the diagnostic and treatment journey, recognising that patient perspectives often differ from those of researchers, clinicians and healthcare authorities.

By applying a self-ethnography-based approach, the survey aims to capture valuable insights into the emotional, social and practical challenges faced by young melanoma patients. The findings will help identify barriers to early diagnosis, screening and treatment, ultimately contributing to the development of more effective and patient-oriented healthcare strategies.

As May marks Melanoma and Skin Cancer Awareness Month, this initiative highlights the importance of listening directly to patients and amplifying their voices within research and healthcare innovation.

The survey was originally developed in English and is now available in 12 additional languages: Dutch, French, German, Hungarian, Italian, Latvian, Macedonian, Polish, Portuguese, Romanian, Spanish and Swedish.

Participation is voluntary and responses are fully anonymous. Participants are kindly asked not to include identifiable personal information such as names or addresses. All collected data is securely stored on the SenseMaker® platform and accessed exclusively by the MPNE & AMER melanoma patient organisation teams for the purposes of the study “The Burden of Melanoma.” Data will be retained for two years before secure erasure.

We warmly encourage patient organisations, healthcare professionals and community partners to support the dissemination of this survey within their networks and help us strengthen the understanding of melanoma experiences among children, adolescents and young adults.

Participate now via link

For questions regarding the survey or data handling, please contact: violeta.astratinei@mpneurope.org