over the edge
Marivaux Hotel, Bd Adolphe Max 98, 1000 Bruxelles
18th- 20th November 2022, Brussels
Why over the edge?
With the Covid situation slowly normalising, we are daring to go back to face-to-face meetings. As we plan to have MPNE 2023 in its tried and tested format in March 2023, we thought we use autumn 2022 for something new!
At Bootcamp22 in Lisbon in May, we got the request for more anticipation and horizon-scanning. Science and policy are currently evolving rapidly and will affect also us in Melanoma- so how do we best prepare for this?
The topic of our last MPNE conferences before COVID in 2018 and 2019 had been under the heading of 'at the edge'- focusing on the latest developments in Melanoma patients and advocates should be aware of as they affect patients.
A new format
Over the Edge is therefore a new format- while our annual conferences look at what currently *is*, the point of Over the Edge is precisely to look at what might be- what are the developments we are seeing and how do we think about them? What can we as community do to ensure that patients are aware? Prepared? What can we do to shape the context around us so that it addresses the needs of patients? The format will be a mix of a traditional conference and workshop- sufficient time for a single topic to work through a topic, both in terms of background as well as group work.
Topics we will address this time
We have chosen three topics to discuss in depth this time, these affect all Melanomas alike:
- Options for our patients out of options.
- Pan-cancer early detection and risk-stratified strategies for surveillance and treatment.
- GILLYWEED- what patients want from their health data
With the upcoming European Health Data Space, EHDS, and the European Cancer Patient Digital Centre proposed by the EU Cancer Mission board, diverse stakeholders voice what they would like to see accomplished. Patients are thereby usually only mentioned as those who should agree for their data to be shared, without any convincing value proposition in return.
We would like to address this imbalance with this upcoming MPNE workshop sessions and a novel concept, building on a sketch for a hypothetical app that Gilly Spurrier drafted for a presentation at the CDDF forum in Amsterdam in September 2023 to illustrate her expectations of what the European Health Data Space should deliver for patients.
We will follow the design process for a hypothetical application dubbed Gillyweed* - in recognition of the author of the original idea, working through the weeds around data-use and the belief that the magic in a functional EHDS lies in providing true value to patients to enable data-sharing in the first place as well as the invitation to focus on what could be if we once did not focus on barriers first.
Building on Gilly’s first concept, we will work through the different needs that patients would like to see addressed with the help of their data, their concerns e.g. with regards to privacy, required control mechanisms and non-negotiables that could potentially undermine the success of the concept.
At this moment in time, the intention is not to build an actual application. While the process will be real, the end product is hypothetical- and as such, free from real-world concerns, very much as the name suggests. We have a first outline of the development steps we would like to take but if you knew of an app developer who would love to help us with the design process, we would like to hear from you!
Why are we doing this? Because, folks, you all know - it will get struck in problems, problems, problems before we even had a chance to think about what we really need and want. And suspending reality for a moment allows just that: for once, we start with patient need first.
*Gillyweed is a magical plant (mentioned in Harry Potter), apparently native to the Mediterranean Sea. It is described as looking like "slimy grayish green rat tails." Consumption of the raw weed results in gills appearing in the subject's neck, and apparently also hands and feet lengthening and growing webs to become effective fins.
Who should attend?
So this is a conference for anyone interested in thinking about the future that we would like to see in Melanoma and to sharpen our concepts accordingly- this will help us to plan MPNE 2023 as well.
This event was made possible through the support of
Program - meeting and rooms at the same venue
full program starts
Working dinner - Brasserie in the Marivaux Hotel
9.00 We will update our patient pathways, these will serve as background for this weekend and our work in 2023, in particular for our recently awarded Horizon Europe project MELCAYA that will start on December 1st! Special focus this time will be on early cutaneous Melanoma but we also welcome colleagues who want to work on rare Melanomas or advanced cutaneous Melanoma.
Project partner in MELCAYA is Melanom Romania who will also co-ordinate the involvement of the wider MPNE community.
Violeta Astratinei, president of Melanom Romania, will reflect on the grant writing process and the project.
Patient pathways are a lot of work and evolve with e.g. novel treatments, so we always build on prior editions. This means you don't have to have worked on previous editions to contribute now! We always welcome fresh eyes!
arrival for the full program
2pm Welcome coffee and review of our patient pathways, zoom in on a. needs for patients who have no standard of care options left
b. early detection and risk-stratified follow-up and treatment strategies
Topic 1- creating more options for our patients out of options. Focus this time: drug development and the role of biobanks
15.00- 16.30 Recent updates for Uveal Melanoma- IOA-244
Michael Lahn, iOnctura
16.30- 18.00 Biobanking
Francesco Florindi, Thermo Fisher Scientific
18.00- 19.00 Establishing national Cancer Mission Hubs
Hugo Soares, AICIB - Agência de Investigação Clínica e Inovação Biomédica, Co-ordinator of the Portuguese Cancer Hub
Bringing it all together- how should we as community prepare for the upcoming establishment of national Cancer Mission hubs? How can these help address the issues encountered by our community?
20.00 Dinner Brasserie at the Marivaux Hotel
8.00- 8.45 Breakfast
Topic 2 Pan-cancer early detection and risk-stratified strategies for surveillance and treatment. please note that this session will focus on non-skin based early detection methods
Scoping: what would our ideal future of Early Detection look like?
Diagnostics: what type of properties do diagnostics have to be successful for screening? Follow-up? What are the current challenges?
Volker Liebenberg, CMO Elypta
10.30- 11.00 Coffee break
Scoping: what would our ideal risk-based follow-up look like? Optimising outcomes will minimising toxicity and long-term side effects
Risk stratification- update from SkylineDx
Arjan van Manen, CSO SkylineDx
12.30- 13.30 Bringing it all together: treating Early Melanoma in the future
13.30- 14.45 Lunch
15.00- 16.30 GILLYWEED- altruism is no business model. What health data has to deliver for Melanoma patients.
Introduction and background and let the drafting begin!
Read how it all started here
16.30- 17.00 Coffee
17.00- 19.30 work on the prototype
20.00 Dinner at the Marivaux Hotel
until lunch time
8.00- 8.45 Breakfast
9.00 GILLYWEED part 2
Finalise the first prototype draft GILLYWEED 1.0
it's not about being perfect, it's about having something to build on in the next discussions on the topic!
14.00 Lunch and departure
WHO SHOULD APPLY?
We are looking for Melanoma patients, carers and advocates who are interested in the topics and who want to try out something new.
Not quite you but still interested to attend? Please contact us.
HOW DO WE SELECT?
As always, participation is upon application only. First and foremost, we select based on motivation: so what do you hope to learn this time? And how do you intend to use it for the benefit of the larger Melanoma community?
WHAT DOES IT COST?
Accepted participants will receive free registration and full-board accommodation for the 2 nights of the meeting. Extra nights are at participants' own expenses.
Travel needs to be arranged for by participants themselves but will be reimbursed up to the maximum amount of €450 for economy/ 2nd class travel after full attendance of the conference. Please look for the best deals and keep the original receipts of your bookings.
Cannot afford to pay ticket upfront? Please contact us.
No attendance, no receipt = no reimbursement.