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Program

 

Friday, 22nd March 

Campus Charité Mitte, Virchowweg 6, 10117 Berlin 

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Morning opportunity for those arriving on the evening of 21 March- visit the Charite Tumor Center. Meeting at 10 am with prof Thomas Eigentler. Details on Slack!

 

12:30 - 13:30 Lunch at the venue 

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13.30- 14.00

Welcome to Charite - the Comprehensive Cancer Centre

An introduction to MELCAYA and the workshop

Bettina Ryll, MPNE and Violeta Astratinei, MPNE/AMER, MELCAYA partners

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Melanoma is a challenge even when it is not rare, and in MPNE, we often deal with patients experiencing misdiagnoses and a lack of access to specialised centres. We want to make a difference for all patients, including children, adolescents, and young adults (CAYA), and for that, we joined MELCAYA.  MELCAYA, a project of 21 European partners, has the ambition to build non-invasive AI technologies for early diagnosis and risk prediction in children and young patients and a second opinion platform. MELCAYA is also looking for ways to bring these technologies to melanoma patients.  However, individual countries ultimately decide on their value within the Health Technology Assessment and, subsequently, on reimbursement. This meeting will explore our understanding of the barriers to melanoma care for 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 our MELCAYA partners.  

 

 

15:00-18:00

Visit the Illumina Solution Centre in Berlin

Illumina GmbH, Eichhornstrasse 3, 10785 Berlin

When melanoma arises in young people, it usually has a germline component, so understanding how next-generation sequencing (NGS) and microarray technologies work is important. From our experience, seeing how they work creates more understanding than just talking about them!

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19.00 Networking dinner at Maritim proArte Hotel, Galerie Restaurant

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Saturday, 23rd March 

 

9.00- 10:30

The melanoma patient journey mapping: a design thinking approach. Landmarks part 1

Violeta Astratinei, Bettina Ryll, MELCAYA and MPNE and Andrew Evans, MPNE

To identify the challenges and barriers to early diagnosis for patients with melanoma, we will build on the MPNE Patient Journey Miro template, a design thinking tool we previously used in MPNE for uveal melanoma. 

Start of the work on the Melanoma Patient Pathway

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10:30-11:00 Coffee break 

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11:00-11.30

Continue the work on the melanoma patient journey mapping

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11:30- 12:30

Keynote lecture speakers- Prevention, early detection and follow up of melanoma

Thomas Eigentler and Max Simon Schlaak

Klinik für Dermatologie,Venerologie und Allergologie, Charité - Campus Mit

Discussion  

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12.30- 14.00 Lunch

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14.00- 16:00 - Please be in the room 5' before starting the session!  

Focus Session- Identifying challenges in Melanoma Prevention and Early Diagnosis and gaps within current melanoma policies for children, adolescents and young adults

with  Laura Sampietro, Head of Innovation Assessment Unit Hospital Clinic Barcelona, researchers Paula Closa and Costanza Raimondi and Prof. Pietro Refolo from Università Cattolica del Sacro Cuore, Rome 

 

We will explore the existing policy strategies and ethical issues in the early diagnosis and treatment of children and young adults. We have the opportunity to further shape countries' regulatory frameworks to reimburse the new AI-related technologies and ensure they reach all patients in need. Further, we will reflect on artificial intelligence risk prediction and early detection tools and how they could reach patients in need. What do we worry about when we speak about our data and artificial intelligence tools to predict melanoma?

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16:00-16:30 Coffee break

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16:30- 18:00

Owning one’s own story- self-ethnography

Bettina Ryll, MPNE and MELCAYA 

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Patient communities have become a study object itself. In most cases, it is an outside researcher defining the topic of interest, the observation and the interpretation- we think it is time to start owning our own story.

Part of our work in MELCAYA is developing techniques that allow patient communities like ours to capture and systematically analyse their own experiences. Each one of us has a story. Together, we own the narrative of our disease.  

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19.15 Dinner at Tiergartenquelle
Bachstraße 482
10555 Berlin

Link to map

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Sunday, 24th March 

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9.30- 12.30  The melanoma patient journey mapping:

Landmarks part 2 and potential solutions

We will work on the solutions and proposals that we consider opportune to resolve the patient's difficulties in accessing melanoma care. 

Violeta Astratinei, Bettina Ryll and Andrew Evans, MELCAYA  and MPNE

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12.30- 13.00 MPNEearly  

Capacity building in early melanoma community  - synergies with iTobos Project

Bettina Ryll, MPNE 

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13.00- 14.00 Closure and Lunch 

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Further reading 

https://onlinelibrary.wiley.com/doi/pdf/10.1002/9781118901731.iecrm0011#:~:text=CAROLYN%20ELLIS,practices%20(%E2%80%9Cethno%E2%80%9D).

https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.31791 

https://www.aacr.org/about-the-aacr/newsroom/news-releases/young-adults-with-cancer-may-harbor-germline-mutations/

Please also join our internal channel on Slack for preparatory reading! 

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