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MPNEconsensus 2024 
patient consensus meeting on data, AI and data-dependent business models 

registration closed

31st January- 2nd February 2024

Fraunhofer Institute for Telecommunications, Heinrich Hertz Institute, HHI, Berlin

Lanolin Fabrik, Salzufer 15/16

Building on the concept of the first MPNE consensus meeting, we are delighted to invite you to the patient consensus meeting on data, AI and data-dependenet business models organised by the Melanoma Patient Network Europe, supported by European Union Horizon 2020 research and innovation funding under the iToBoS project, grant agreement 965221. 














This time, the ambition is to develop a patient-centric consensus on the use of data, AI and related business models that captures the position of the patient community. 



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. The information will provide an independently generated patient input to the iToBoS project and beyond. Obviously, we don't live in an empty space- so if you have a position that you think patients should be aware of- please get in touch under bettina.ryll<at>!  

Co-creation and synergies

The event is co-created with partners from iToBoS, MELCAYA, the Human Colossus foundation and others (to be confirmed) who want to discuss their work or projects with the cancer patient community. Confirmed so far are:






Problem statement


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. 


EN-Funded by the EU-POS.jpg
EN-Funded by the EU-POS.jpg

This project has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement No 965221.

This project has received funding from the European Union's Horizon Europe research and innovation programme under grant agreement No 101096667.

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Wednesday, 31st January 2024

arrival and networking dinner

6pm Tiergartenquelle

Inspired by A PINT OF SCIENCE, we will have our very own MPNE PINT OF Large Language Models, Machine Learning and anything else our colleagues with IT background think those of us others should know.

Over a pint, of course. 

Thursday, 1st February 2024

start 9am


9.00 Welcome and introduction

9.15- 10.30 Topic 1- Setting the sceneRisk/ benefit approaches to the use of data and AI - finding the right balance 

Data use will always come with potential benefits as well as risks that are often not born by the same parties. How do we get the balance right?


Rob White, MPNE





PRO- We still lose 50% of our people with advanced Melanoma and have no time to lose. Therefore, all patient data should be shared automatically and with whoever is interested to make sure we have the fastest research and most effective development of diagnostics and drugs. 

CONTRA- There is an awful lot of promises but little delivery out there. No paper cured a patient ever and drugs that are so expensive no one can access them are pointless- while patients and their family will for sure bear the risk if things go wrong. 


This will be a team exercise- information on prep calls on slack!

10.30- 11.00 Coffee 

11.00- 11.45 Topic 2- Data security and privacy 

Ariel Farkash , IBM and iToBoS partner

introduction: listen to Abigail for an introduction! 




12.00- 13.30 Lunch 

13.30- 15.00 Topic 3- Session co-organised with TEF-Health: realising the benefit of data and AI for patients 

In order to reach patients, findings have to be turned into products or services. If these heavily rely on data or data-processing, safety and effectiveness as well as the underlying business models are critical


13.30- 14.00 Andrew Evans on the Dark Side of AI, tricky poems and why patient advocates should care about Large Language Models 

14.00- 15.00  TEF-Health

Johanna Furuhjelm, TEF-Health

About TEF- Health

' Technological advances in the field of AI and robotics are being made at a breathtaking pace – and the healthcare sector is not spared from these developments. Yet it goes without saying that new medical devices and procedures must first prove their safety and usefulness before they can be adopted in clinical practice. In the European Union, the areas of AI and robotics, which are set to have a far-reaching impact on the healthcare sector, especially have to meet high quality requirements, but there is still a lack of testing infrastructure for developing standards, validating innovations, and certifying new products.

This is precisely where the Testing and Experimentation Facility for Health AI and Robotics (TEF-Health) comes in. The project that started in January 2023 is supported by the EC and national funding agencies with a total of about €60 million, aims to facilitate and accelerate the validation and certification of AI and robotics in medical devices. In total, 51 academic and private partners from nine European countries are involved in the project, integrating existing infrastructures as well as building new ones.' source

Discussion, conclusions

15.00- 15.30 Coffee 

15.30- 16.30 Topic 4Sharing data is hard, sharing genomic data is….maybe not even a good idea?

In light of recent data breaches and controversies, e.g. 23andMe and the UK biobank, a very timely discussion. 

Basis for the discussion: B1MG just published their policy recommendations on sharing genomic data.

Marie-Laure Yaspo, Max Planck Institute for Molecular Genetics and Alacris Theranostics



Rob White, MPNE




16.30- 18.00 Topic 5- What is the ethical compass when we talk about health data in the pursuit of EthicalAI?
Robin Renwick and Sarah Murray
, Trilateral Research 

'Trilateral Research, iToBoS partnerThis interactive session, moderated by Robin and Sarah from Trilateral Research, will explore topics and themes relevant to the iToBoS project, with specific focus on health data, artificial intelligence, and ethics. Guided by humour, candidness and existential questioning, the workshop will provoke participants to share perspectives, views, hopes, fears, and expectations for emerging technology and data-led strategies in the future provision of health care.’


Discussion, conclusions

19.00 Dinner Café am Neuen See 

Friday, 2nd February 2024 

start 9am 

9.00- 10.30 Topic 6- Artificial Intelligence we can trust 

Sebastian Roland Lapuschkin, Fraunhofer Institute and iToBoS

  • Explainable AI

  • Actionable AI

  • Regenerative AI​




10.30- 11.00 Coffee

11.00- 12.30 Topic 7- Trust by Design with The Human Colossus Foundation

‘Trust by design’: No- trust environments

  • Transparency, traceability and accountability

  • Protection against misuse- legal/ ethical 

  • Future-proofing our system




Lunch 12.30- 13.30 

13.30- 15.00 Topic 8- Healthcare system implementation of new technologies & AI

with Marco Marchetti and the team, AGENAS, Italy and MELCAYA- to be confirmed 

  • Challenges in assessing AI-related health technologies 

and Lukas Heinlein & team from the German Cancer Research Center DKFZ and MELCAYA

  • Applications based on AI and data within the MELCAYA project





Summary of the external part of the program 

15.00- 15.30 Coffee

15.30- 17.30 Practical Session with the Human Colossus Foundation 

19.00 Dinner - Wulle 

Saturday, 3rd February 2024


patient advocates only 

9.00- 10.30

  • review of the meeting

  • formulate a patient position on Data, AI and related business models


10.30- 11.00 Coffee 


11.00- 13.00

13.00 summary and conclusion


13.15 lunch and departure


“This house believes that patients should be compelled to give up their data for whatever purpose the state sees fit; if they wish to benefit from solidarity-based universal healthcare”.

Participation for patient advocates 



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. 



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?


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. 


Fraunhofer Institute Berlin



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