Government-funded Health Research Contracts in Australia: A Critical Assessment of Transparency

Australian governments claim to be committed to improving transparency and democratic accountability. Yet they are increasingly contracting out research to external consultants, ‘think tanks’ and universities and the contractual relationships formed can, in fact, promote secrecy and undermine the goals of transparency and public scrutiny of government actions. This article reports on a first-in-kind study of research contracts between Commonwealth and New South Wales Government entities and external providers. Our analysis reveals that ‘control clauses’ are prevalent: contractually, governments can insist on the rights to determine whether, when and how the results of research are publicly disseminated, to claim intellectual property rights over work produced, and to terminate contractual relationships at will and without cause. These findings have troubling implications for government openness and accountability, for academic freedom when university researchers face restrictions on publication, and for evidence-informed policymaking. We propose solutions for proactive information disclosure to ensure that government transparency promises are realised in practice. We advocate for comprehensive public release of contract details and urge governments to publish the findings of contract research in an online repository

Economic ordering and payment policies under progressive payment schemes and time-value of money

Trade credits have received considerable attention in recent years and have become one of the most important sources of short-term funding for many companies. The paper at hand studies the optimal ordering and payment policies of a buyer assuming that the supplier offers a progressive interest scheme. The contribution to the literature is twofold. First, the different financial conditions of the companies involved are taken into account by assuming that the credit interest rate of the buyer may, but not necessarily has to, exceed the interest rate charged by the supplier. In addition, the time-value of money is considered in this scenario which is relevant when trade credit terms are valid for a long period of time and payment flows need to be evaluated by their net present value to ensure long-term profitability. The models proposed enable decision makers to improve ordering and payment decisions and the results reveal that taking into account the temporal allocation of payments, the prevailing interest relation influences replenishment policies significantly

The influence of financial conditions on optimal ordering and payment policies under progressive interest schemes

In many business-to-business transactions, the buyer is not required to pay immediately after the receipt of an order, but is instead allowed to postpone the payment to its suppliers for a certain period. In such a situation, the buyer can either settle the account at the end of the credit period or authorize the payment later, usually at the expense of interest that is charged by the supplier on the outstanding balance. Some payment terms, which are often referred to as trade credit contracts, contain progressive interest charges. In such cases, the supplier offers a sequence of credit periods, where the interest rate that is charged on the outstanding balance usually increases from period to period. If a buyer faces a progressive trade credit scheme, various options for settling the unpaid balance exist, where the financial impact of each option depends on the current credit interest structure and the alternative investment conditions. This paper studies the influence of different financial conditions in terms of alternative investment opportunities and credit interest structure on the optimal ordering and payment policies of a buyer on the condition that the supplier provides a progressive interest scheme. For this purpose, mathematical models are developed and analyzed

Including People with Dementia in Research: An Analysis of Australian Ethical and Legal Rules and Recommendations for Reform

Research is crucial to advancing knowledge about dementia, yet the burden of the disease currently outpaces research activity. Research often excludes people with dementia and other cognitive impairments because researchers and ethics committees are concerned about issues related to capacity, consent, and substitute decision-making. In Australia, participation in research by people with cognitive impairment is governed by a national ethics statement and a patchwork of state and territorial laws that have widely varying rules. We contend that this legislative variation precludes a consistent approach to research governance and participation and hinders research that seeks to include people with impaired capacity. In this paper, we present key ethical principles, provide a comprehensive review of applicable legal rules in Australian states and territories, and highlight significant differences and ambiguities. Our analysis includes recommendations for reform to improve clarity and consistency in the law and reduce barriers that may exclude persons with dementia from participating in ethically approved research. Our recommendations seek to advance the national decision-making principles recommended by the Australian Law Reform Commission, which emphasize the rights of all adults to make their own decisions and for those with impaired capacity to have access to appropriate supports to help them make decisions that affect their lives

An improved model for the Earth's gravity field

An improved model for the Earth's gravity field, TEG-1, was determined using data sets from fourteen satellites, spanning the inclination ranges from 15 to 115 deg, and global surface gravity anomaly data. The satellite measurements include laser ranging data, Doppler range-rate data, and satellite-to-ocean radar altimeter data measurements, which include the direct height measurement and the differenced measurements at ground track crossings (crossover measurements). Also determined was another gravity field model, TEG-1S, which included all the data sets in TEG-1 with the exception of direct altimeter data. The effort has included an intense scrutiny of the gravity field solution methodology. The estimated parameters included geopotential coefficients complete to degree and order 50 with selected higher order coefficients, ocean and solid Earth tide parameters, Doppler tracking station coordinates and the quasi-stationary sea surface topography. Extensive error analysis and calibration of the formal covariance matrix indicate that the gravity field model is a significant improvement over previous models and can be used for general applications in geodesy

Doctors, Lawyers and advance care planning: Time for innovation to work together to meet client needs

Health organizations in Canada have invested considerable resources in strategies to improve knowledge and uptake of advance care planning (ACP). Yet barriers persist and many Canadians do not engage in the full range of ACP behaviours, including writing an advance directive and appointing a legally authorized decision-maker. Not engaging effectively in ACP disadvantages patients, their loved ones and their healthcare providers. This article advocates for greater collaboration between health and legal professionals to better support clients in ACP and presents a framework for action to build connections between these typically siloed professions

Pressure for drug development in lysosomal storage disorders – a quantitative analysis thirty years beyond the US orphan drug act

Background: Lysosomal storage disorders are a heterogeneous group of approximately 50 monogenically inherited orphan conditions. A defect leads to the storage of complex molecules in the lysosome, and patients develop a complex multisystemic phenotype of high morbidity often associated with premature death. More than 30 years ago the Orphan Drug Act of 1983 passed the United States legislation intended to facilitate the development of drugs for rare disorders. We directed our efforts in assessing which lysosomal diseases had drug development pressure and what distinguished those with successful development and approvals from diseases not treated or without orphan drug designation. Methods: Analysis of the FDA database for orphan drug designations through descriptive and comparative statistics. Results: Between 1983 and 2013, fourteen drugs for seven conditions received FDA approval. Overall, orphan drug status was designated 70 times for 20 conditions. Approved therapies were enzyme replacement therapies (N = 10), substrate reduction therapies (N = 1), small molecules facilitating lysosomal substrate transportation (N = 3). FDA approval was significantly associated with a disease prevalence higher than 0.5/100,000 (p = 0.00742) and clinical development programs that did not require a primary neurological endpoint (p = 0.00059). Orphan drug status was designated for enzymes, modified enzymes, fusion proteins, chemical chaperones, small molecules leading to substrate reduction, or facilitating subcellular substrate transport, stem cells as well as gene therapies. Conclusions: Drug development focused on more common diseases. Primarily neurological diseases were neglected. Small clinical trials with either somatic or biomarker endpoints were successful. Enzyme replacement therapy was the most successful technology. Four factors played a key role in successful orphan drug development or orphan drug designations: 1) prevalence of disease 2) endpoints 3) regulatory precedent, and 4) technology platform. Successful development seeded further innovation

A study of macro-, meso- and micro-barriers and enablers affecting extended scopes of practice: The case of rural nurse practitioners in Australia

© 2019 The Author(s). Background: Shortages of skills needed to deliver optimal health care in rural and remote locations raises questions about using extended scopes of practice or advanced practice models in a range of health professions. The nurse practitioner (NP) model was introduced to address health service gaps; however, its sustainability has been questioned, while other extended scope of practice roles have not progressed in Australia. This study aimed to explore the experiences and perceptions of NPs and their colleagues about barriers to and enablers of extended scope of practice and consider the relevance of the findings to other health professions. Methods: Semi-structured, in-depth interviews were conducted with primary, nurse practitioner informants, who were also invited to nominate up to two colleagues, as secondary informants. Data analysis was guided by a multi-level, socio-institutional lens of macro-, meso- and micro-perspectives. Results: Fifteen primary informants and five colleagues were interviewed from various rural and remote locations. There was a fairly even distribution of informants across primary, aged, chronic and emergency or critical care roles. Key barriers and enablers at each level of analysis were identified. At the macro-level were legal, regulatory, and economic barriers and enablers, as well as job availability. The meso-level concerned local health service and community factors, such as attitudes and support from managers and patients. The micro-level relates to day-to-day practice. Role clarity was of considerable importance, along with embedded professional hierarchies and traditional role expectations influencing interactions with individual colleagues. Given a lack of understanding of NP scope of practice, NPs often had to expend effort promoting and advocating for their roles. Conclusions: For communities to benefit from extended scope of practice models of health service delivery, energy needs to be directed towards addressing legislative and regulatory barriers. To be successful, extended scope of practice roles must be promoted with managers and decision-makers, who may have limited understanding of the clinical importance. Support is also important from other members of the interprofessional health care team