Entrepreneurial treatment activism for undone science: mannitol and Parkinson’s disease

Abstract

This paper describes CliniCrowd, a patient-designed, entrepreneurial, crowd-sourced citizen-science approach to evaluating mannitol—essentially, an orphan drug—as a Parkinson’s disease treatment. As such, CliniCrowd addresses ‘undone science’, and our paper contributes to the sociological literature thereon. Based on 38 qualitative interviews, fieldwork, and content analyses (2017–2020), we trace CliniCrowd’s background and rationale. We: discuss undone science and its wider contexts; present earlier iterations of citizen-science and treatment activism; examine CliniCrowd’s application of crowd-sourced citizen-science to address undone science around ‘orphan drug’ treatment for Parkinson’s disease; explore how CliniCrowd has evolved, and re-framed its work, since its founding; ponder its future; and consider whether their approach can guide future citizen-science treatment research. Our paper contributes to the existing literature in four ways. First, we focus on medical treatment issues, an under-studied area of undone science. Second, we highlight orphan drugs as both major source of, and fruitful area for research on, undone science. Third, we describe CliniCrowd’s pragmatic, entrepreneurial—rather than the more common activist—citizen-science approach to addressing undone treatment science. Finally, from our data on CliniCrowd we distil a preliminary model for future treatment activism around undone science.