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MPNEconsensus 2024: a patient consensus on data, AI and data-dependent business models.

On 31st January- 2nd February 2024, MPNE organised the MPNEconsensus2024 meeting on data, AI and data-dependent business models with the support and at the venue of the Fraunhofer Institute for Telecommunications, Heinrich Hertz Institute, Berlin. The consensus meeting was one of the iToBoS patient-led activities with the intention to formulate a series of consensus statements that independently and without external prompts capture patients' interests and concerns with regards to data, AI and data-dependent business models.

The meeting was motivated by the desire to provide an input to the iToBoS project that rather than opinions and positions of a few captured the thinking of the larger MPNE patient advocacy community and that was the result of sufficient debate and informed by relevant technical expertise. MPNEconsensus2024 was planned and organised by MPNE while external speakers, including iToBoS partners, contributed their technical expertise on dedicated topics and ensured sufficient depth of discussions: Ariel Farkash from iToBoS partner IBM on Data Security and Privacy, Sebastian Lapuschkin from from iToBoS partner Fraunhofer Institute on Explainable AI, Robin Renwick and Sarah Murray from from iToBoS partner Trilateral Research on the Ethics of AI, Lennart Jütte from from iToBoS partner the University of Hanover on Regenerative AI as Art Therapy and Daniel Martinez, from the iToBoS communication team attended as well.

Further and to ensure synergies between iToBoS and other relevant initiatives, Johanna Furuhjelm presented TEF-HEALTH, Philippe Page work from the Human Colossus Foundation on distributed data governance and a recent EU-project, NextGEN, and ​Marie-Laure Yaspo from Max Planck Institute for Molecular Genetics Berlin and Alacris Theranostics  on advanced molecular diagnostics from a research and a business perspective to highlight the challenges linked to handling genomics data. Lukas Heinlein and David Krauss from DKFZ and sister-project MELCAYA presented their work on patient preferences with regards to data sharing. MPNE patient advocates and faculty from 14 countries (Finland, France, Germany, Hungary, Ireland, Israel, Latvia, Netherlands, Poland, Romania, Spain, Sweden, Switzerland and UK) participated in the event and ensured diversity in perspective; patient advocates prepared over-arching, principles on the topic prior to the meeting and presented them in the form of an Oxford debate to provide the frame for the following meeting. Each topic was then introduced in the form of a presentation, then discussed, pertinent points documented and formulated as consensus statements, these were reviewed for a first time on site during the final session of the event. Consensus statements were then clustered, clarified and re-ordered and re-submitted to the participations, feed-back is ongoing (deadline 29th March).

In preparation is also a White Paper documenting the consensus process, the resulting over-arching consensus statements as well as topic-specific sections providing background information and topic-specific consensus statements (data security and privacy; ethical frameworks on data use and AI; trustworthy AI; data governance; platforms for debate and consensus building). The White paper will serve as resource and documentation of patient-input into the iToBoS project but also made publicly available as other initiatives and projects have already documented interest; topics will be further expanded in independent initiatives within and beyond iToBoS.

The White Paper's ambition is to serve as a growing resource that centred on the interests and concerns of cancer patients can inform and serve as a reference for the ongoing debate around data and AI.

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