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Paper short abstract

AI-powered prediction models for severe mental illness used presymptomatically are believed to operate in future healthcare systems. Individuals with experience of mental illness and their support persons imagine the use of prediction tools in future healthcare systems accentuating polarisation.

Paper long abstract

Background. In psychiatry, there are attempts to develop predictive models identifying risk for severe mental illness before any clinical symptoms appear, thus enabling early intervention and reduction of long-term burden of mental illness. Such risk prediction tools are currently in the early stages of development, but potentially they will be operated in social contexts and care systems of different countries.

Research question. How do individuals with lived experience of mental illness and their support persons imagine the use of prediction tools in future healthcare systems?

Methods. Thirty semi-structured interviews with individuals with lived experience of mental illness and their support persons from 9 European countries conducted during 2024.

Results. The complicated experience of mental illness is lived through in different social and healthcare systems. Some systems are perceived as supportive and reduce othering, whereas others are difficult to access, associated with increased stigmatisation building a polarising divide of healthy and unhealthy. Research participants worried about the use of predictive models becoming mandatory to access healthcare and reproducing further inequalities.

Research participants imagine future trajectories of the potential predictive model as rooted in their past experiences (difficulties accessing support, prejudiced attitudes from professionals, etc). If the existing experience with the healthcare system is seen as responsive for needs, people are more likely to see the benefit of the predictive model since it allows timely prevention of the illness or its consequences. Meanwhile those who experienced healthcare systems as unsupportive, see the tool bringing more of a risk of inequality.