Health social movements and the hybridisation of ‘cause regimes’: an ethnography of a British childbirth organisation

This article reports on an ethnographic study of the UK’s largest health advocacy organisation dedicated to pregnancy, childbirth and parenting, the National Childbirth Trust or NCT. Working from interview data, textual materials and fieldnotes, we articulate three key phases in the NCT’s historically shifting relationships to feminism, medicine, the state and neoliberal capitalism. The concept of folded cause regimes is introduced as we examine how these phases represent the hybridisation of the organisation’s original cause. We argue that for the NCT the resulting multiplicity of cause regimes poses significant challenges, but also future opportunities. The apparent contradictions between cause regimes offer important insights into contemporary debates in the sociology of health and illness and raises critical questions about the hybrid state of health advocacy today. Focussing on cause allows for a deeper understanding of the intense pressures of diversification, marketisation and the professionalization of dissent faced by third sector organisations under current social and economic conditions

Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

The National Institute for Health Research (NIHR) aims to improve national ‘health and wealth' by providing infrastructural support to enable clinical research in National Health Service settings in England and Wales. Cognisant of the consequences of studies' failure to achieve required numbers of participants, it also actively campaigns to promote patient awareness of research, and willingness to participate in trials. In this paper, we analyse recent NIHR campaigns and policies designed to encourage patients to participate in clinical research to interrogate how they are implicated in the national bioeconomy. In doing so we expand the notion of ‘clinical labour' to include the work of patient recruitment and highlight an emergent obligation on patients to contribute to research processes. Whereas once patient knowledge and experience may have been devalued, here we draw on the concept of ‘assetisation' (Birch 2012) to explore the emergent relationship between healthcare system and patient as research participant. We consider how patients' contribution goes beyond the provision of standardised objects of valuation so that patients themselves may be perceived as assets to, not only recipients of, the national healthcare system

Low-Cost Precursors to Novel Hydrogen Storage Materials

From 2005 to 2010, The Dow Chemical Company (formerly Rohm and Haas Company) was a member of the Department of Energy Center of Excellence on Chemical Hydrogen Storage, which conducted research to identify and develop chemical hydrogen storage materials having the potential to achieve DOE performance targets established for on-board vehicular application. In collaboration with Center co-leads Los Alamos National Laboratory (LANL) and Pacific Northwest National Laboratory (PNNL), and other Center partners, Dow's efforts were directed towards defining and evaluating novel chemistries for producing chemical hydrides and processes for spent fuel regeneration. In Phase 1 of this project, emphasis was placed on sodium borohydride (NaBH{sub 4}), long considered a strong candidate for hydrogen storage because of its high hydrogen storage capacity, well characterized hydrogen release chemistry, safety, and functionality. Various chemical pathways for regenerating NaBH{sub 4} from spent sodium borate solution were investigated, with the objective of meeting the 2010/2015 DOE targets of $2-3/gal gasoline equivalent at the pump ($2-3/kg H{sub 2}) for on-board hydrogen storage systems and an overall 60% energy efficiency. With the September 2007 No-Go decision for NaBH{sub 4} as an on-board hydrogen storage medium, focus was shifted to ammonia borane (AB) for on-board hydrogen storage and delivery. However, NaBH{sub 4} is a key building block to most boron-based fuels, and the ability to produce NaBH{sub 4} in an energy-efficient, cost-effective, and environmentally sound manner is critical to the viability of AB, as well as many leading materials under consideration by the Metal Hydride Center of Excellence. Therefore, in Phase 2, research continued towards identifying and developing a single low-cost NaBH4 synthetic route for cost-efficient AB first fill, and conducting baseline cost estimates for first fill and regenerated AB using a variety of synthetic routes. This project utilized an engineering-guided R&D approach, which involved the rapid down-selection of a large number of options (chemical pathways to NaBH{sub 4}) to a smaller, more manageable number. The research began by conducting an extensive review of the technical and patent literature to identify all possible options. The down-selection was based on evaluation of the options against a set of metrics, and to a large extent occurred before experimentation was initiated. Given the vast amount of literature and patents that has evolved over the years, this approach helped to focus efforts and resources on the options with the highest technical and commercial probability of success. Additionally, a detailed engineering analysis methodology was developed for conducting the cost and energy-efficiency calculations. The methodology utilized a number of inputs and tools (Aspen PEA{trademark}, FCHTool, and H2A). The down-selection of chemical pathways to NaBH{sub 4} identified three options that were subsequently pursued experimentally. Metal reduction of borate was investigated in Dow's laboratories, research on electrochemical routes to NaBH{sub 4} was conducted at Pennsylvania State University, and Idaho National Laboratory researchers examined various carbothermal routes for producing NaBH{sub 4} from borate. The electrochemical and carbothermal studies did not yield sufficiently positive results. However, NaBH{sub 4} was produced in high yields and purities by an aluminum-based metal reduction pathway. Solid-solid reactive milling, slurry milling, and solution-phase approaches to metal reduction were investigated, and while both reactive milling and solution-phase routes point to fully recyclable processes, the scale-up of reactive milling processes to produce NaBH{sub 4} is expected to be difficult. Alternatively, a low-cost solution-phase approach to NaBH{sub 4} has been identified that is based on conventional process unit operations and should be amenable to scale-up. Numerous advances in AB synthesis have been made in recent years to improve AB yields and purities. Process analysis of several leading routes to AB (Purdue's formate-based metathesis route and PNNL's NH{sub 4}BH{sub 4}-based route) indicated the cost to produce first-fill AB to be on the order of $9-10/kg AB, assuming a NaBH{sub 4} cost of$5/kg for a 10,000 metric tons/year sized AB plant. The analysis showed that the dominant cost component for producing first-fill AB is the cost of the NaBH4 raw material. At this AB cost and assuming 2.5 moles hydrogen released per mole of AB, it may be possible to meet DOE's 2010 storage system cost target, but the 2015 target will likely require lower cost AB and demonstrates the importance of having a low-cost route to NaBH{sub 4}. Substantial progress has also been made to define feasible pathways for the regeneration of spent ammonia borane fuel

Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD

OBJECTIVE: To develop a resource of systematically collected, longitudinal clinical data and biospecimens for assisting in the investigation into neuromyelitis optica spectrum disorder (NMOSD) epidemiology, pathogenesis, and treatment. METHODS: To illustrate its research-enabling purpose, epidemiologic patterns and disease phenotypes were assessed among enrolled subjects, including age at disease onset, annualized relapse rate (ARR), and time between the first and second attacks. RESULTS: As of December 2017, the Collaborative International Research in Clinical and Longitudinal Experience Study (CIRCLES) had enrolled more than 1,000 participants, of whom 77.5% of the NMOSD cases and 71.7% of the controls continue in active follow-up. Consanguineous relatives of patients with NMOSD represented 43.6% of the control cohort. Of the 599 active cases with complete data, 84% were female, and 76% were anti-AQP4 seropositive. The majority were white/Caucasian (52.6%), whereas blacks/African Americans accounted for 23.5%, Hispanics/Latinos 12.4%, and Asians accounted for 9.0%. The median age at disease onset was 38.4 years, with a median ARR of 0.5. Seropositive cases were older at disease onset, more likely to be black/African American or Hispanic/Latino, and more likely to be female. CONCLUSION: Collectively, the CIRCLES experience to date demonstrates this study to be a useful and readily accessible resource to facilitate accelerating solutions for patients with NMOSD

Female hormonal exposures and neuromyelitis optica symptom onset in a multicenter study

Objective: To study the association between hormonal exposures and disease onset in a cohort of women with neuromyelitis optica spectrum disorder (NMOSD). Methods: Reproductive history and hormone use were assessed using a standardized reproductive survey administered to women with NMOSD (82% aquaporin-4 antibody positive) at 8 clinical centers. Using multivariable regression, we examined the association between reproductive exposures and age at first symptom onset (FS). Results: Among 217 respondents, the mean age at menarche was 12.8 years (SD 1.7). The mean number of pregnancies was 2.1 (SD 1.6), including 0.3 (SD 0.7) occurring after onset of NMOSD symptoms. In the 117 participants who were postmenopausal at the time of the questionnaire, 70% reported natural menopause (mean age: 48.9 years [SD 3.9]); fewer than 30% reported systemic hormone therapy (HT) use. Mean FS age was 40.1 years (SD 14.2). Ever-use of systemic hormonal contraceptives (HC) was marginally associated with earlier FS (39 vs 43 years, p = 0.05). Because HC use may decrease parity, when we included both variables in the model, the association between HC use and FS age became more significant (estimate = 2.7, p = 0.007). Among postmenopausal participants, 24% reported NMOSD onset within 2 years of (before or after) menopause. Among these participants, there was no association between age at menopause or HT use and age at NMOSD onset. Conclusions: Overall, age at NMOSD onset did not show a strong relationship with endogenous hormonal exposures. An earlier onset age did appear to be marginally associated with systemic HC exposure, an association that requires confirmation in future studies

Collaborative International Research in Clinical and Longitudinal Experience Study in NMOSD.

Objective: To develop a resource of systematically collected, longitudinal clinical data and biospecimens for assisting in the investigation into neuromyelitis optica spectrum disorder (NMOSD) epidemiology, pathogenesis, and treatment. Methods: To illustrate its research-enabling purpose, epidemiologic patterns and disease phenotypes were assessed among enrolled subjects, including age at disease onset, annualized relapse rate (ARR), and time between the first and second attacks. Results: As of December 2017, the Collaborative International Research in Clinical and Longitudinal Experience Study (CIRCLES) had enrolled more than 1,000 participants, of whom 77.5% of the NMOSD cases and 71.7% of the controls continue in active follow-up. Consanguineous relatives of patients with NMOSD represented 43.6% of the control cohort. Of the 599 active cases with complete data, 84% were female, and 76% were anti-AQP4 seropositive. The majority were white/Caucasian (52.6%), whereas blacks/African Americans accounted for 23.5%, Hispanics/Latinos 12.4%, and Asians accounted for 9.0%. The median age at disease onset was 38.4 years, with a median ARR of 0.5. Seropositive cases were older at disease onset, more likely to be black/African American or Hispanic/Latino, and more likely to be female. Conclusions: Collectively, the CIRCLES experience to date demonstrates this study to be a useful and readily accessible resource to facilitate accelerating solutions for patients with NMOSD