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Short abstract:

Gathering research data in unfamiliar territories such as medical AI poses challenges. Social science researchers may also need help with AI complexities. This paper emphasises Public and Patient Involvement (PPI) in medical AI research, presenting its significance in the ongoing PARADISE project.

Long abstract:

Artificial intelligence (AI) demonstrates exceptional potential in health and medicine. However, due to its disruptive nature, it is sometimes challenging to predefine the benefits and harms it can bring to health(care). Therefore, research aimed at understanding the benefits of AI interventions in medicine and highlighting specific societal, legal, ethical, or technical issues is crucial. Researchers also face the challenge of gathering data on a topic that is largely unfamiliar to the public, primarily if the research is focused on patients or healthcare professionals who have not yet had the opportunity to encounter AI. Social science researchers may also face many uncertainties in understanding AI due to technicalities in the field. Medical AI requires researchers to employ creative approaches, such as anticipatory ethics or arts-based research, to engage with participants. This paper will focus on PPI (Public and Patient Involvement) as a crucial aspect of medical AI research. PPI practice is common in drug and therapy testing and, when implementing AI, provides insights that are extremely useful in all stages of AI, from its design to its use. The paper will present the experience of the PPI group deeply embedded in the PARADISE project (PersonAlisation of RelApse risk in autoimmune DISEase), where involved patients are not the subjects of research but partners in research and main contributors who help to steer the development process of the AI solution, i.e. a personalised, predictive tool that accurately estimates the approximate moment of the individual’s degree of immune system activation.