Understanding how the public feel decisions should be made about access to their personal health data for AI research

Ipsos partnered with the Open Data Institute and Imperial College Health Partners to deliver a public dialogue for the NHS AI Lab and Sciencewise, which will be used to steer priorities for future research. 

Ipsos conducted four online workshops, with the same set of forty-seven participants, over a period of three weeks. They were asked to deliberate about different ways of making decisions about access to data, weighing up the risks and benefits of each approach.

The three approaches were:

• Delegated decision-making: someone making decisions on your behalf and for other people like you.
• Collective decision-making: people making decisions as part of a larger group.
• Individual: people making decisions for themselves or on behalf of someone they care for.

The findings of the deliberation show:

• Participants often suggested that a combination of complementary approaches should be used, given that no single approach was seen as perfect. 
• A set of themes emerged which formed the basis of some of the deliberations about the different approaches. These highlighted the areas that participants felt were important to consider and often formed the basis of the trade-offs they debated.

• Throughout the dialogue, participants raised a number of questions which will be important to consider for future research. These included questions about the feasibility of implementing different decision-making approaches and the levels of understanding required from the public or patients within the different approaches discussed, as well considering how to ensure inclusivity within the decision-making process and how the approaches could ensure public engagement is meaningful. They were also keen to explore the impact of incentivisation on participation.