consensus meeting on data, AI and data-dependent business models
SAVE THE DATE and check back soon-
program under rapid development
31st January- 2nd February 2024
Building on the concept of the first MPNE consensus meeting, we are delighted to invite you to MPNE CONSENSUS 2024.
BP4P- by patients for patients: MPNE is responsible for the overall organisation and the drafting of a white paper covering the discussion at the meeting and a final consensus document capturing the position of the MPNE community.
Co-creation- the event is co-created with partners from the space who want to discuss their work or projects with the cancer patient community. Confirmed so far are:
Fraunhofer Institute Berlin
(your logo not hear, pls send me one!!!)
Interested? Please reach out to discuss!
Patients always get asked- or at least listened to- last. And that despite the fact that, thanks to GDPR, any type of data use ultimately relies on the end user’s agreement; societal support is therefore critical to the success to the EHDS.
Not using data is no option.
With patients critically relying on progress in research and the successful implementation of research findings into routine healthcare through new practices, services or products, not leveraging the potential inherent in data use and artificial intelligence is irresponsible, in particular, in light of aging populations and increasing resource constraints.
Trust is good. Control is better.
At the same time, patients and their families are those most likely to suffer from data breaches and misuse, e.g. here. Misuse can and will occur, even despite initial good intent. Therefore, systems that ensure effective anticipation and transparent, credible mitigation by design are essential to gain patients’ and citizens’ trust. With GDPR maximally distributing control to the level of the individual citizen, 'no-trust' environments that ensure protection by design and that ensure that citizens KNOW and not only HOPE they are safe will be essential prerequisites for a functioning EHDS.
This consensus meeting will address topics that MPNE has identified as critical to the overall discussion on the usage of data, including 2ndary use, artificial intelligence and business models.
So far, we anticipate 5 areas for discussion, each focusing on a topic of particular relevance to our community.
arrival and dinner
Saturday for patient advocates only
Risk/ benefit approaches to the use of data and AI - finding the right balance
Sharing data is hard, sharing genomic data is….maybe not even a good idea?
with The Human Colossus Foundation
‘Trust by design’: No- trust environments
Transparency, traceability and accountability
Protection against misuse- legal/ ethical
Future-proofing our system
with Fraunhofer Institute, iToBoS
Artificial Intelligence we can trust
With Sebastian Roland Lapuschkin, Fraunhofer Institute and iToBoS
Trustworthy/ explainable AI
Novel business models
Novel business models that do not rely on owning datasets
Regulatory sandboxes- protected spaces for learning
Integration of digital business products into healthcare
Participation for patient advocates
WHO SHOULD APPLY?
We are looking for Melanoma patients, carers and advocates with interest in the topic who are keen to listen and discuss with other stakeholders and technical experts on the topics and who want to contribute to draft a patient-centric consensus statement for our network.
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 nights of the meeting. Extra nights are at participants' own expenses and need to be arranged by the participants themselves.
Venues are expected to comply with local COVID measures and so will the event. Please be aware that these differ from country to country. We expect participants to comply by local rules and ensure they are sufficiently vaccinated. In line with general rules, there will be no mask mandate anymore. Participation in the event is at the participant's own risk.
Travel needs to be arranged for by participants themselves but will be reimbursed up to the maximum amount of 350€ 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.