MPNEminiMeet 2022
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. 

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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. 

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Topics we will address this time 

We have chosen three topics to discuss in depth this time, these affect all Melanomas alike:

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- 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 

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On GILLYWEED

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.

Further, MPNE is project partner in iToBoS (Intelligent Total Body Scanner for Early Detection of Melanoma) a European project funded under the European Union's Horizon 2020 research and innovation programme under grant agreement No 965221; one of MPNE's roles in the project are to contribute the patients' point of view on the use of their data within the project. 

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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 hope that this process will capture the views and preferences of the MPNE community with regards to data use- a perspective that we will then contribute to the overall discussion as well as specifically in concrete projects such as iToBoS.

 

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.

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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, as we 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. 

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*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. 

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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. 

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This event was made possible through the support of 

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ELYPTA

IONCTURA

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