Civil liberties and the critics of safe vaccination: Australian Vaccination Network Inc v Health Care Complaints Commission [2012] NSWSC 110

Public immunisation programs have, time and again, demonstrated their effectiveness at reducing mortality and morbidity from vaccine-preventable diseases such as measles and pertussis. Governments, health agencies and almost all health practitioners regard vaccines as safe and cost-effective treatments with a low risk profile. Nevertheless, despite, or perhaps because of, their success, immunisation programs and vaccines have increasingly been questioned by various lobby groups, sceptical of the safety of vaccines and the motives of those who administer them. Whereas the reach of these groups would have once been limited by the cost of postage, the internet has delivered a global audience. The extent to which these anti-vaccination advocates are expected to comply with the ethical and professional standards applied to registered health professionals remains unresolved in Australia. As demonstrated in the case of Australian Vaccination Network Inc v Health Care Complaints Commission [2012] NSWSC 110, the ability of professional oversight bodies to regulate the information promoted by these lobby groups is limited by traditional conceptions of the doctor-patient relationship and the clinical setting in which medical advice is delivered. Acknowledging that vaccines, like all medical treatments, involve some level of risk, this article explores the relationship between the state, parents, family, medical professionals and such lobbyists within a human rights framework, suggesting that most public immunisation programs deliver benefits in "the best interest of the child" that, on balance, provide a good result for the civil liberties of Australians

CANCER VOICES AUSTRALIA v MYRIAD GENETICS INC [2013] FCA 65:Should gene patent monopolies trump public health?

At a time when the double mastectomy of Angelina Jolie has highlighted the importance of genetic testing for breast cancer, the Federal Court�s decision in Cancer Voices Australia v Myriad Genetics Inc [2013] FCA 65 has clarified that, for now at least, isolated DNA and RNA can constitute a patentable invention under s 18(1)(a) of the Patents Act 1990 (Cth). This is a significant decision for companies seeking to secure patents over DNA and genetic material, whether isolated or not. This column critically examines this case in the context of parallel legal action currently underway in the United States. It also reviews it with regard to political and bureaucratic inaction in Australia (much of which relies upon an overly restrictive interpretation of the High Court decision in National Research Development Corp v Commissioner of Patents (1959) 102 CLR 252) that has compromised the setting of cost-effective public health limits on patentable subject matter concerning the human genome

Government Control Over Health-Related Not-For-Profit Organisations: Agency for International Development v Alliance for Open Society International Inc 570 US_ (2013)

The relationship between government and the not-for-profit (NFP) sector has important implications for society, especially in relation to the delivery of public health measures and the protection of the environment. In key health-related areas such as provision of medical services, welfare, foreign aid and education, governments have traditionally preferred for the NFP sector to act as service partners, with the relationship mediated through grants or funding agreements. This service delivery arrangement is intended to provide a diversity of voices, and encourage volunteerism and altruism, in conjunction with the purposes and objectives of the relevant NGO. Under the pretence of "accountability", however, governments increasingly are seeking to impose intrusive conditions on grantees, which limit their ability to fulfil their mission and advocate on behalf of their constituents. This column examines the United States Supreme Court decision, Agency for International Development v Alliance for Open Society International Inc 570 US_(2013), and compares it to the removal of gag clauses in Australian federal funding rules. Recent national changes to the health-related NFP sector in Australia are then discussed, such as those found in the Charities Act 2013 (Cth) and the Not-for-Profit Sector Freedom to Advocate Act 2013 (Cth). These respectively include the establishment of the Australian Charities and Not-For-Profit Commission, the modernising of the definition of "charity" and statutory blocks on "gag" clauses. This analysis concludes with a survey of recent moves by Australian States to impose new restrictions on the ability of health-related NFPs to lobby against harmful government policy Among the responses considered is the protection afforded by s 51l(xxiiiA) of the Australian Constitution. This constitutional guarantee appears to have been focused historically on preventing medical and dental practitioners and related small businesses being practically coerced into government or large-scale private corporate operations. As such, it may prohibit civil conscription arising not only from "gag clauses" in managed care contracts, but also from "gag clauses" in governmental ideological controls over taxpayer-funded, health-related NFPs

Assessing the reproducibility of discriminant function analyses.

Data are the foundation of empirical research, yet all too often the datasets underlying published papers are unavailable, incorrect, or poorly curated. This is a serious issue, because future researchers are then unable to validate published results or reuse data to explore new ideas and hypotheses. Even if data files are securely stored and accessible, they must also be accompanied by accurate labels and identifiers. To assess how often problems with metadata or data curation affect the reproducibility of published results, we attempted to reproduce Discriminant Function Analyses (DFAs) from the field of organismal biology. DFA is a commonly used statistical analysis that has changed little since its inception almost eight decades ago, and therefore provides an opportunity to test reproducibility among datasets of varying ages. Out of 100 papers we initially surveyed, fourteen were excluded because they did not present the common types of quantitative result from their DFA or gave insufficient details of their DFA. Of the remaining 86 datasets, there were 15 cases for which we were unable to confidently relate the dataset we received to the one used in the published analysis. The reasons ranged from incomprehensible or absent variable labels, the DFA being performed on an unspecified subset of the data, or the dataset we received being incomplete. We focused on reproducing three common summary statistics from DFAs: the percent variance explained, the percentage correctly assigned and the largest discriminant function coefficient. The reproducibility of the first two was fairly high (20 of 26, and 44 of 60 datasets, respectively), whereas our success rate with the discriminant function coefficients was lower (15 of 26 datasets). When considering all three summary statistics, we were able to completely reproduce 46 (65%) of 71 datasets. While our results show that a majority of studies are reproducible, they highlight the fact that many studies still are not the carefully curated research that the scientific community and public expects

SAT0614-HPR Identifying and optimising multiple intervention components and their delivery within a self-management smartphone app for people with Sjögren’s syndrome: A qualitative study

Background: Sjögren’s syndrome (SS) is an autoimmune rheumatic disease with diverse symptoms including mental and physical fatigue, dryness, pain and sleep disturbances. These symptoms are interconnected and rarely occur in isolation. Improving symptoms and quality of life requires people with SS to navigate multiple interventions and engage in self-management. Smartphone applications (apps) can deliver multiple cognitive and behaviour-based interventions in users’ everyday daily lives and are readily accessible. However, delivering several therapeutic interventions together within a single coherent self-management app requires systematic and evidence-based selection of intervention components, and an understanding of existing self-management approaches and their associated challenges for those living with SS. Objectives: To identify theory-based intervention components for inclusion in a SS self-management app. To understand the self-management approaches and challenges of those living with SS to inform in-app component delivery. Methods: First, to identify intervention components within the app, existing interventions that target each symptom of fatigue, dryness, pain, sleep disturbance were identified through a literature search. Their content was coded by the research team using behaviour change techniques and the Theoretical Domains Framework 1 . The content was grouped to form five intervention components which target multiple symptoms. Second, to understand SS self-management approaches and challenges, 13 people living with SS took part in a series of qualitative focus groups (n=6) and design workshops (n=7). Focus groups involved participants discussing their own self-management experiences and approaches (e.g. when and how they employed a variety of techniques). In design workshops participants sketched metaphors to explain these experiences and used craft materials to create “Magic Machines” 2 addressing their self-management challenges. Focus groups and design workshops were audio-recorded, transcribed, thematically analysed as a single data set, and findings mapped to the self-determination theory 3 dimensions of capability, autonomy, and relatedness. Results: Intervention components identified were: i) SS psychoeducation, ii) relaxation techniques, iii) activity pacing and goal setting, iv) assertiveness and communication skills, and v) sleep and dryness tips. Participants tackled complex symptom patterns (i.e. symptom interrelatedness and flares) using different self-management approaches; reactively (focusing on the most severe symptom) or systematically (one symptom at a time). Knowing which intervention techniques to choose was felt to be challenging; however the availability of multiple interventions techniques provided a sense of optimism and motivation. Participants were enthusiastic about accessing several intervention techniques via an app, but warned that smartphones and technology can exacerbate mental fatigue and eye dryness. The invisible nature of symptoms, and highly visible nature of management techniques (e.g. applying eye drops), presented further self-management challenges relating to their interactions with other people. Conclusion: Promising components to include in an SS app were identified but should be tested in an optimisation trial. The in-app delivery of component modules should be designed to support diverse self-management approaches, choice and autonomy, yet provide module recommendations and guidance when needed, and be simple to use to reduce mental fatigue and dry eye symptoms. A self-management app should also be designed to enable users to share information about SS with other people

“No powers, man!”: A student perspective on designing university smart building interactions

Smart buildings offer an opportunity for better performance and enhanced experience by contextualising services and interactions to the needs and practices of occupants. Yet, this vision is limited by established approaches to building management, delivered top-down through professional facilities management teams, opening up an interaction-gap between occupants and the spaces they inhabit. To address the challenge of how smart buildings might be more inclusively managed, we present the results of a qualitative study with student occupants of a smart building, with design workshops including building walks and speculative futuring. We develop new understandings of how student occupants conceptualise and evaluate spaces as they experience them, and of how building management practices might evolve with new sociotechnical systems that better leverage occupant agency. Our findings point to important directions for HCI research in this nascent area, including the need for HBI (Human-Building Interaction) design to challenge entrenched roles in building management

The Crumbling Wall: Data Archiving and Reproducibility in Published Science

Data are the foundation of empirical research, yet all too often the datasets underlying published papers are lost or poorly curated. This is a serious issue, because future researchers are then unable to validate published results, and the data cannot be used to explore new ideas and hypotheses. As part of a study on how the availability of research data is affected by article age, we emailed authors to request the raw data from 516 published articles. These 516 studies were all published between 1991 and 2011, and included a Discriminant Function Analysis (DFA) on morphometric data from animals or plants. We found that broken emails and outdated storage media were the main obstacles to getting the data, such that we only received a total of 101 datasets. However, even when we did receive a data file, there is no guarantee that it matches the exact dataset used in the study itself. To assess how often problems with metadata or data curation affect reproducibility, we tried to recreate the DFA results reported in the paper. Nine papers did not present common types of quantitative results from their DFA and were excluded. For an additional 15 papers we were unable to relate the dataset we received to that used in the original DFA. The reasons ranged from incomprehensible or absent variable labels, the DFA being performed on an unspecified random subset of the data, or incomplete data sets. For another 20 papers, the dataset seemed to correspond to the one in the paper but we could not come close to recreating the authors’ results, which (of course) may stem from an error on either our or the authors’ part. We were able to exactly repeat the results of the DFA analyses from 29 papers, and came very close with an additional 17. Our results illustrate the disconnect between the carefully documented and repeatable science we learned about in school and the grim reality of the current situation – many datasets are lost within a few years, and a significant proportion of the remainder are rendered useless by poor data curation.&nbsp

Assessing the reproducibility of discriminant function analyses

Data are the foundation of empirical research, yet all too often the datasets underlying published papers are unavailable, incorrect, or poorly curated. This is a serious issue, because future researchers are then unable to validate published results or reuse data to explore new ideas and hypotheses. Even if data files are securely stored and accessible, they must also be accompanied by accurate labels and identifiers. To assess how often problems with metadata or data curation affect the reproducibility of published results, we attempted to reproduce Discriminant Function Analyses (DFAs) from the field of organismal biology. DFA is a commonly used statistical analysis that has changed little since its inception almost eight decades ago, and therefore provides an opportunity to test reproducibility among datasets of varying ages. Out of 100 papers we initially surveyed, fourteen were excluded because they did not present the common types of quantitative result from their DFA or gave insufficient details of their DFA. Of the remaining 86 datasets, there were 15 cases for which we were unable to confidently relate the dataset we received to the one used in the published analysis. The reasons ranged from incomprehensible or absent variable labels, the DFA being performed on an unspecified subset of the data, or the dataset we received being incomplete. We focused on reproducing three common summary statistics from DFAs: the percent variance explained, the percentage correctly assigned and the largest discriminant function coefficient. The reproducibility of the first two was fairly high (20 of 26, and 44 of 60 datasets, respectively), whereas our success rate with the discriminant function coefficients was lower (15 of 26 datasets). When considering all three summary statistics, we were able to completely reproduce 46 (65%) of 71 datasets. While our results show that a majority of studies are reproducible, they highlight the fact that many studies still are not the carefully curated research that the scientific community and public expects

Multi-instrument observations of the effects of a solar wind pressure pulse on the high latitude ionosphere : a detailed case study of a geomagnetic sudden impulse

Funding: ARF was supported by an STFC studentship, Science Foundation Ireland Grant 18/FRL/6199, and an Irish Research Council Government of Ireland Postdoctoral Fellowship GOIPD/2022/782. ML, TKY, and SEM acknowledge support from the Science and Technology Facilities Council, UKRI, grant no. ST/W00089X/1. JAC is supported by Royal Society grant DHF\R1\211068. HKS was supported by an STFC studentship. TE was supported by a Leverhulme Trust Early Career Fellowship (ECF-2019-155), the University of Leicester and the University of Glasgow. SJW was supported by NERC studentship NE/L002493/1. MKJ was supported by STFC Grant ST/W00089X/1. JML was supported by the Irish Research Council. LJP was supported by AFOSR MURI Award 26-0201-51-62.The effects of a solar wind pressure pulse on the terrestrial magnetosphere have been observed in detail across multiple datasets. The communication of these effects into the magnetosphere is known as a positive geomagnetic sudden impulse (+SI), and are observed across latitudes and different phenomena to characterise the propagation of +SI effects through the magnetosphere. A superposition of Alfvén and compressional propagation modes are observed in magnetometer signatures, with the dominance of these signatures varying with latitude. For the first time, collocated lobe reconnection convection vortices and region 0 field aligned currents are observed preceding the +SI onset, and an enhancement of these signatures is observed as a result of +SI effects. Finally, cusp auroral emission is observed collocated with the convection and current signatures. For the first time, simultaneous observations across multiple phenomena are presented to confirm models of +SI propagation presented previously.Publisher PDFPeer reviewe