Crowd Research: From Resistance to Creating Alternative Avenues of Influence: The case of Mannitol and Parkinson's

This lecture describes an alternative, entrepreneurial model for evaluating Mannitol as a treatment for Parkinson's disease. We do not address directly the question of whether, in fact, Mannitol is clinically effective. Instead, we explore the social forces and implications relating to its evaluation. Between 2012-2014, preliminary research by credentialed Israeli scientists identified Mannitol as potentially effective against clumps of alpha-synuclein, a known sign of Parkinson's disease. However, since Mannitol is a natural substance, its products cannot be patented. Pharmaceutical companies are therefore uninterested in researching Mannitol's efficacy as a treatment for Parkinson's. We present our ethnography of the establishment of an Israeli non-profit high-tech biomed company seeking to fill this vacuum via network-based studies. This company arose from the initiative of a high-tech entrepreneur who turned to colleagues to help him find a solution to Parkinson's after he, himself, was diagnosed with the disease. The model they developed is based on a network of patients who agree both to take Mannitol long-term, and to fill out and submit detailed monthly questionnaires about their symptoms and state of health. The resulting database is available both to these patients and to interested professionals. Additionally, patients have developed a related online support group. The fieldwork that followed the project was carried out between 2017 and 2019, and included: 20 semi-structured interviews with scientists studying the disease, project workers, and patients; observations made during meetings of patients and at medical conferences; and content analyses of the Company's website, the forum dedicated to patients taking part in the project, and public notices about the project in the written and electronic media. We describe the mobilization of several Israeli entrepreneurs who turned to philanthropic work, and their decision to employ "crowd research" through mass recruitment of patients. We will also describe how, after a critical mass of Parkinson's patients began to take Mannitol and regularly fill out questionnaires on their disease symptoms, an alternative body of research data emerged that partly confirmed the results of preclinical trials on Mannitol's possible effects. Along with the resultant public pressure, this led to initiation of several studies since 2018 to examine Mannitol's clinical utility for Parkinson's. Further, we epistemically and rhetorically track the introduction of the term "nutritional supplement" in the Company's discourse. This term reflects a tactical decision to conduct a form of boundary work by positioning Mannitol so as to exempt it from the lengthy, costly approval process required for pharmaceuticals, and to create an alternative channel of influence and action through the food supplement market. We consider our case in light of earlier "alternative research" models, such as: the grassroots epidemiology practiced by residents of toxic-exposed Woburn, Massachusetts; community-based clinical trials evaluating aerosolized pentamidine as a treatment for AIDS; as well as the more recent crowd-sourcing PatientsLikeMe model. Our study is a cross-sectional "snapshot" of an enterprise that is a moving target, likely to evolve from its present configuration. We thus explore the possibilities of using the network for a new, crowd-sourced type of research that generates a new medical-public discourse. For example, we propose the term "critical crowd knowledge" (CCK) to describe the process of accumulating knowledge gained, not through the pharmaceutical industry or clinical trials, but by alternative forms of research knowledge. This knowledge, combined with public pressure, can lead to the clinical examination of materials or treatments that do not have the potential for patent registration or significant economic gain. The term suggests a theoretical conceptualization of a possible method of action for researchers, patients, and entrepreneurs who encounter similar cases in the future.