Collective self-experimentation in patient-led research: How online health communities foster innovation.

Researchers across academia, government, and private industry increasingly value patient-led research for its ability to produce quick results from large samples of the population. This study examines the role played by self-experimentation in the production of health data collected in these projects. We ask: How does the collaborative context of online health communities, with their ability to facilitate far-reaching collaborations over time and space, transform the practice and epistemological foundations of engaging in n = 1 experimentation? We draw from a digital ethnography of an online patient-led research movement, in which participants engage in self-experiments to develop a protocol for using psilocybe-containing mushrooms as a treatment for cluster headache, an excruciating neurological disease for which there is little medical research and huge unmet treatment need. We find that the collectivizing features of the internet have collectivized self-experimentation. Group dynamics shape everything in "collective self-experimentation," from individual choices of intervention, reporting of outcomes, data analysis, determinations of efficacy, to embodiment. This study raises important questions about the role that individuals play in the creation of medical knowledge and the data that informs crowdsourced research.

MotherNature: establishing a Canadian research network for natural health products (NHPs) during pregnancy and lactation.

BACKGROUND: It has been estimated that between 7% and 55% of expectant mothers use herbal medicines or other types of natural health products (NHPs). Unfortunately, the safety and efficacy of NHPs during pregnancy and lactation is largely unknown. The Motherisk Program, at the Hospital for Sick Children, Toronto, Ontario, Canada, the is the major Canadian group to counsel and monitor outcomes of women using medications or NHPs, or of women exposed to chemicals, radiation or infection during pregnancy and lactation. OBJECTIVE: To create a network for research on NHPs during pregnancy and lactation by forming longstanding collaborations among Canadian medical and complementary and alternative medicine (CAM) practitioners and scientists. METHODOLOGY: MotherNature Network members participated in three 2-day workshops and three conference calls throughout the length of this study. Each member was responsible to lead discussions surrounding one theme and address the following: initiation; development; presentation; and synthesis of comments of all members on the designated theme. RESULTS: We prioritized areas in high need for future research and collaborative means to conduct such research. NHPs were prioritized for their importance for future study. Areas for the prospective collection of data on NHP use in pregnancy and lactation were identified. A research and business plan was developed for the long-term sustainability of the Network. CONCLUSIONS: The MotherNature Network is well-situated to create a new climate in Canada, where data are collected and interpreted on the effects and safety of NHPs during pregnancy and lactation.

Horta terapêutica e saúde bucal: desafios na utilização de plantas medicinais na promoção da saúde / Therapeutic gardens and oral health: challenges in the use of medicinal plants in health promotion

Resumo A inserção de hortas terapêuticas no SUS fomenta o cuidado compartilhado e incentiva promissoras abordagens terapêuticas para saúde bucal, pois transporta para o centro as práticas populares em saúde. Isso implica reorganizar os serviços adotando como eixo a Clínica Ampliada. Estudos nessa esfera justificam-se pela necessidade de conhecer experiências desenvolvidas nos territórios. Relata-se o trabalho desenvolvido de março a agosto de 2017 numa Unidade Básica de Saúde do município de Vitória-ES. As experiências e efeitos dos processos de trabalho foram cartografados com a equipe de saúde bucal e usuários, a partir da construção de uma horta na Estratégia da Saúde da Família. Adotaram-se como eixos metodológicos: produção de diário de campo e realização de entrevistas semiestruturadas. A investigação produziu dispositivos de análise coletiva dos processos de trabalho e das práticas de formação, que expressam ainda incompatibilidades entre o perfil profissional demandado para estruturação da Clínica Ampliada e os reais processos de trabalho em Odontologia. Assim, compreender a construção da horta como dispositivo de criação de redes de cuidado implica delinear práticas ricas em interlocuções interdisciplinares e elaborar novas concepções de atuação em saúde bucal e possibilidades para a Atenção Primária.

Abstract The insertion of therapeutic gardens in SUS fosters shared care and encourages promising therapeutic approaches to oral health, as it transports popular health practices to the center. This implies reorganizing the services using the Extended Clinic as an axis. Studies in this sphere are justified by the need to know experiences developed in the territories. The work carried out from March to August 2017 in a Basic Health Unit in Vitória-ES is reported. The experiences and effects of the work processes were mapped with the oral health team and users, from the construction of a vegetable garden in the Family Health Strategy. The methodological axes were adopted: production of field diaries and conducting semi-structured interviews. The investigation produced devices for collective analysis of work processes and training practices, which also express incompatibilities between the professional profile required for structuring the Amplified Clinic and the real work processes in Dentistry. Thus, understanding the construction of the garden as a device for creating care networks implies outlining practices rich in interdisciplinary dialogue and developing new concepts of performance in oral health and possibilities for Primary Care.