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.