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MPNE overarching consensus statements on data and AI

 

1. Data use is an ethical imperative as people are dying and we have data that could save them.

2. Data should be used but not abused. Individuals and societies need to be effectively protected against abuse; this will require new ethical frameworks for the use of data and AI, diverse risk mitigation strategies and proactivity and agility in the approach.

3. The approach to data use should be risk-appropriate, similar to the benefit/ risk trade-offs we see with drugs. Data is not a one-size-fits all category: differentiation of different data sets and the risks associated with them is critical.

4. Health data is common goods- it is not acceptable to extract value for a few and settle patients and society with the risks; this will require new models for business and research beyond platformization. 

5. Altruism gaslighting is unacceptable: people have valid concerns and reservations, e.g. with regards to their privacy, protection against misuse and one-sided value extraction.

6. We need zero-trust environments beyond the reach of single parties, institutions or governments for the handling of data, in particular, for genomic data, to protect the rights of citizens.

7. Governance needs to ensure that those most affected by the risks have a voice.

8. We see that tech is not able to self-regulate, control therefore has to occur at the level of laws and regulations. We need hard guardrails of what is permissible, real-time monitoring and effective enforcement, e.g. existential fines to ensure compliance.

9. We need future-proof approaches, taking into account ‘the unknown unknowns’ of future technologies. We need to consider the risks for today’s but also for future generations.

10. We as patient community need spaces for learning, exchange and debate to develop understanding and a position on complex topics- such as data and AI- that affect patients.

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Background to the MPNE consensus statements

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MPNE Consensus 2024, organised and facilitated by MPNE, took place from 31 January to 02 February 2024 at the Fraunhofer Institute for Telecommunication in Berlin, Germany. Building on the success of the first MPNE Consensus Meeting in 2020, the primary goal of this meeting was to develop a patient consensus on data, artificial intelligence (AI), and data-dependent business models in healthcare to serve as input for the iToBoS- Intelligent Total Body Scanner for Early Detection of Melanoma- project. 

 

With project partners from iToBoS, MELanoma in Childhood Adolescence and Young Adults (MELCAYA), The Human Colossus Foundation (HCF), and Testing and Experimentation Facility for Health AI and Robotics (TEF-Health), the event provided patient advocates with access to expertise to inform the consensus building process.

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MPNE is currently working on a meeting report providing the background to the statements as well as a linked publication. Going forward and in addition to the 10 over-arching consensus statements, MPNE seeks to further develop consensus in the following 6 areas:

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- Data governance and trust-by-design

- Data security and privacy

- Proactivity and agility

- Ethical frameworks for AI

- Trustworthy and reliable AI

- New models for data-dependent business and research

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Should you be interested in exchange or collaboration on any of these, please do reach out!

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iToBoS is a European project funded under European Union's Horizon 2020 research and innovation programme under grant agreement No 965221. The information and views of this website lie entirely with the authors. The European Commission is not responsible for any use that may be made of the information it contains.

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