Refusing participation: hesitations about designing responsible patient engagement with artificial intelligence in healthcare

Abstract

The rapidly expanding field of artificial intelligence (AI) is often accompanied by calls for parallel research on its societal implications. For research about AI in healthcare, this translates to some form of patient engagement. In this article, we question whether patient engagement and participation really contribute to responsible AI. We first summarise existing critiques of patient participation. We review the critiques of the critiques, themselves motivated by the wish to contribute, and not to leave the field solely to computer- and data scientists. In the final section, we express our doubts about the possibilities for developing positive, generative interventions, and explore ‘refusal’ and ‘hesitation’ as forms of critique and engagement. The conclusion presents a checklist for refusing patient participation, an addition to the growing repertoire of tools for patient participation and responsible innovation. The article draws on and contributes to the STS tradition of creative and speculative writing.

Keywords

• Artificial intelligence (AI)
• creative non-fiction
• methods
• participation
• patients
• refusal