Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond

Abstract

ABSTRACT Patient involvement is increasingly regarded a key part of responsible innovation (RI) in biomedicine. The high expectations to participation call not only for methodological experiments, but also for critical analyses of the conditions and products of participatory practices. Based on an experiment with involving patients in Alzheimer’s disease biomarker research, we identify and reflect on two key conditions in patient involvement that we summarize as ‘subtle voices’ and ‘distant futures’. The former refers to the hesitance and knowledge hierarchies that participants may enact and/or experience; the latter refers to the challenges of imagining elusive technologies and future practices, not least in the light of an illness that fundamentally changes the meaning of time. We argue that while our case may be exceptionally challenging, it provides a valuable lens for illuminating these key conditions that promotors and facilitators of patient participation in, especially, early-stage innovation processes should acknowledge and address.