Archiving primary data: Solutions for long-term studies

The recent trend for journals to require open access to primary data included in publications has been embraced by many biologists, but has caused apprehension amongst researchers engaged in long-term ecological and evolutionary studies. A worldwide survey of 73 principal investigators (Pls) with long-term studies revealed positive attitudes towards sharing data with the agreement or involvement of the PI, and 93% of PIs have historically shared data. Only 8% were in favor of uncontrolled, open access to primary data while 63% expressed serious concern. We present here their viewpoint on an issue that can have non-trivial scientific consequences. We discuss potential costs of public data archiving and provide possible solutions to meet the needs of journals and researchers.

Mosaic PPM1D mutations are associated with predisposition to breast and ovarian cancer

Improved sequencing technologies offer unprecedented opportunities for investigating the role of rare genetic variation in common disease. However, there are considerable challenges with respect to study design, data analysis and replication. Using pooled next-generation sequencing of 507 genes implicated in the repair of DNA in 1,150 samples, an analytical strategy focused on protein-truncating variants (PTVs) and a large-scale sequencing case-control replication experiment in 13,642 individuals, here we show that rare PTVs in the p53-inducible protein phosphatase PPM1D are associated with predisposition to breast cancer and ovarian cancer. PPM1D PTV mutations were present in 25 out of 7,781 cases versus 1 out of 5,861 controls (P = 1.12 × 10-5), including 18 mutations in 6,912 individuals with breast cancer (P = 2.42 × 10-4) and 12 mutations in 1,121 individuals with ovarian cancer (P = 3.10 × 10-9). Notably, all of the identified PPM1D PTVs were mosaic in lymphocyte DNA and clustered within a 370-base-pair region in the final exon of the gene, carboxy-terminal to the phosphatase catalytic domain. Functional studies demonstrate that the mutations result in enhanced suppression of p53 in response to ionizing radiation exposure, suggesting that the mutant alleles encode hyperactive PPM1D isoforms. Thus, although the mutations cause premature protein truncation, they do not result in the simple loss-of-function effect typically associated with this class of variant, but instead probably have a gain-of-function effect. Our results have implications for the detection and management of breast and ovarian cancer risk. More generally, these data provide new insights into the role of rare and of mosaic genetic variants in common conditions, and the use of sequencing in their identification.

Dietary and exercise interventions to improve quality of life, metabolic risk factors and androgen deficiency symptoms in men with prostate cancer undergoing androgen deprivation therapy

Introduction Lifestyle interventions might be useful in the management of adverse effects of androgen deprivation therapy (ADT) in men with prostate cancer. Objectives To examine the effects of dietary and exercise interventions on quality of life (QoL), metabolic risk factors and androgen deficiency symptoms in men with prostate cancer undergoing ADT. Methods CINAHL, Cochrane library, Medline and PsychINFO were searched to identify randomised controlled trials published from January, 2004 to October, 2014. Data extraction and methodological quality assessment was independently conducted by two reviewers. Meta-analysis was conducted using RevMan® 5.3.5. Results Of 2183 articles retrieved, 11 studies met the inclusion criteria and had low risk of bias.Nine studies evaluated exercise (resistance and/or aerobic and/or counselling) and three evaluated dietary supplementation. Median sample size =79 (33–121) and median intervention duration was 12 weeks (12–24). Exercise improved QoL measures (SMD 0.26, 95%CI −0.01 to 0.53) but not body composition, metabolic risk or vasomotor symptoms. Qualitative analysis indicated soy (or isoflavone) supplementation did not improve vasomotor symptoms; however, may improve QoL. Conclusions Few studies have evaluated the efficacy of lifestyle interventions in the management of adverse effects of ADT. We found inconclusive results for exercise in improving QoL and negative results for other outcomes. For soy-based products, we found negative results for modifying vasomotor symptoms and inconclusive results for improving QoL. Future work should investigate the best mode of exercise for improving QoL and other interventions such as dietary counselling should be investigated for their potential to modify these outcomes.

Amplified stories: Digital technology and representations of lived experiences

New media technologies and the narrative turn in qualitative research has expanded the methods through which we gather data about and share findings of groups who have traditionally been written about by others rather than telling their own stories to reveal the complexities of their experiences. This chapter explores two projects that use storytelling and technology in an effort to change public perceptions about disadvantaged a community or cohort that have specific circumstances but are a result of policies beyond their control.

QUT’s research data storage solutions: A launchpad for research journeys

This poster presents key features of how QUT’s integrated research data storage and management services work with researchers through their own individual or team research life cycle. By understanding the characteristics of research data, and the long-term need to store this data, QUT has provided resources and tools that support QUT’s goal of being a research intensive institute. Key to successful delivery and operation has been the focus upon researchers’ individual needs and the collaboration between providers, in particular, Information Technology Services, High Performance Computing and Research Support, and QUT Library. QUT’s Research Data Storage service provides all QUT researchers (staff and Higher Degree Research students (HDRs)) with a secure data repository throughout the research data lifecycle. Three distinct storage areas provide for raw research data to be acquired, project data to be worked on, and published data to be archived. Since the service was launched in late 2014, it has provided research project teams from all QUT faculties with acquisition, working or archival data space. Feedback indicates that the storage suits the unique needs of researchers and their data. As part of the workflow to establish storage space for researchers, Research Support Specialists and Research Data Librarians consult with researchers and HDRs to identify data storage requirements for projects and individual researchers, and to select and implement the most suitable data storage services and facilities. While research can be a journey into the unknown[1], a plan can help navigate through the uncertainty. Intertwined in the storage provision is QUT’s Research Data Management Planning tool. Launched in March 2015, it has already attracted 273 QUT staff and 352 HDR student registrations, and over 620 plans have been created (2/10/2015). Developed in collaboration with Office of Research Ethics and Integrity (OREI), uptake of the plan has exceeded expectations.

Climate change and forests in India

Forests play a critical role in addressing climate change concerns in the broader context of global change and sustainable development. Forests are linked to climate change in three ways. i) Forests are a source of greenhouse gas (GHG) emissions: ii) Forests offer mitigation opportunities to stabilise GHG concentrations: iii) Forests are impacted by climate change. This paper reviews studies related to climate change and forests in India: first, the studies estimating carbon inventory for the Indian land use change and forestry sector (LUCF), then the different models and mitigation potential estimates for the LUCF sector in India. Finally it reviews the studies on the impact of climate change on forest ecosystems in India, identifying the implications for net primary productivity and bio-diversity. The paper highlights data, modelling and research gaps relevant to the GHG inventory, mitigation potential and vulnerability and impact assessments for the forest sector in India.

The case for “n«all”: Why the Big Data revolution will probably happen differently in the mining sector

Big Data and predictive analytics have received significant attention from the media and academic literature throughout the past few years, and it is likely that these emerging technologies will materially impact the mining sector. This short communication argues, however, that these technological forces will probably unfold differently in the mining industry than they have in many other sectors because of significant differences in the marginal cost of data capture and storage. To this end, we offer a brief overview of what Big Data and predictive analytics are, and explain how they are bringing about changes in a broad range of sectors. We discuss the “N=all” approach to data collection being promoted by many consultants and technology vendors in the marketplace but, by considering the economic and technical realities of data acquisition and storage, we then explain why a “n « all” data collection strategy probably makes more sense for the mining sector. Finally, towards shaping the industry’s policies with regards to technology-related investments in this area, we conclude by putting forward a conceptual model for leveraging Big Data tools and analytical techniques that is a more appropriate fit for the mining sector.

Medium-Coupled Bus-Based INS-GPS Sensor Fusion for Accurate and Reliable Positioning

A scheme for integration of stand-alone INS and GPS sensors is presented, with data interchange over an external bus. This ensures modularity and sensor interchangeability. Use of a medium-coupled scheme reduces data flow and computation, facilitating use in surface vehicles. Results show that the hybrid navigation system is capable of delivering high positioning accuracy.

A linear programming approach for estimating the structure of a sparse linear genetic network from transcript profiling data

Background: A genetic network can be represented as a directed graph in which a node corresponds to a gene and a directed edge specifies the direction of influence of one gene on another. The reconstruction of such networks from transcript profiling data remains an important yet challenging endeavor. A transcript profile specifies the abundances of many genes in a biological sample of interest. Prevailing strategies for learning the structure of a genetic network from high-dimensional transcript profiling data assume sparsity and linearity. Many methods consider relatively small directed graphs, inferring graphs with up to a few hundred nodes. This work examines large undirected graphs representations of genetic networks, graphs with many thousands of nodes where an undirected edge between two nodes does not indicate the direction of influence, and the problem of estimating the structure of such a sparse linear genetic network (SLGN) from transcript profiling data. Results: The structure learning task is cast as a sparse linear regression problem which is then posed as a LASSO (l1-constrained fitting) problem and solved finally by formulating a Linear Program (LP). A bound on the Generalization Error of this approach is given in terms of the Leave-One-Out Error. The accuracy and utility of LP-SLGNs is assessed quantitatively and qualitatively using simulated and real data. The Dialogue for Reverse Engineering Assessments and Methods (DREAM) initiative provides gold standard data sets and evaluation metrics that enable and facilitate the comparison of algorithms for deducing the structure of networks. The structures of LP-SLGNs estimated from the INSILICO1, INSILICO2 and INSILICO3 simulated DREAM2 data sets are comparable to those proposed by the first and/or second ranked teams in the DREAM2 competition. The structures of LP-SLGNs estimated from two published Saccharomyces cerevisae cell cycle transcript profiling data sets capture known regulatory associations. In each S. cerevisiae LP-SLGN, the number of nodes with a particular degree follows an approximate power law suggesting that its degree distributions is similar to that observed in real-world networks. Inspection of these LP-SLGNs suggests biological hypotheses amenable to experimental verification. Conclusion: A statistically robust and computationally efficient LP-based method for estimating the topology of a large sparse undirected graph from high-dimensional data yields representations of genetic networks that are biologically plausible and useful abstractions of the structures of real genetic networks. Analysis of the statistical and topological properties of learned LP-SLGNs may have practical value; for example, genes with high random walk betweenness, a measure of the centrality of a node in a graph, are good candidates for intervention studies and hence integrated computational – experimental investigations designed to infer more realistic and sophisticated probabilistic directed graphical model representations of genetic networks. The LP-based solutions of the sparse linear regression problem described here may provide a method for learning the structure of transcription factor networks from transcript profiling and transcription factor binding motif data.

The challenges of Weibo for data-driven digital media research

Data generated via user activity on social media platforms is routinely used for research across a wide range of social sciences and humanities disciplines. The availability of data through the Twitter APIs in particular has afforded new modes of research, including in media and communication studies; however, there are practical and political issues with gaining access to such data, and with the consequences of how that access is controlled. In their paper ‘Easy Data, Hard Data’, Burgess and Bruns (2015) discuss both the practical and political aspects of Twitter data as they relate to academic research, describing how communication research has been enabled, shaped and constrained by Twitter’s “regimes of access” to data, the politics of data use, and emerging economies of data exchange. This conceptual model, including the ‘easy data, hard data’ formulation, can also be applied to Sina Weibo. In this paper, we build on this model to explore the practical and political challenges and opportunities associated with the ‘regimes of access’ to Weibo data, and their consequences for digital media and communication studies. We argue that in the Chinese context, the politics of data access can be even more complicated than in the case of Twitter, which makes scientific research relying on large social data from this platform more challenging in some ways, but potentially richer and more rewarding in others.

Rank regression for analysis of clustered data: A natural induced smoothing approach

We consider rank regression for clustered data analysis and investigate the induced smoothing method for obtaining the asymptotic covariance matrices of the parameter estimators. We prove that the induced estimating functions are asymptotically unbiased and the resulting estimators are strongly consistent and asymptotically normal. The induced smoothing approach provides an effective way for obtaining asymptotic covariance matrices for between- and within-cluster estimators and for a combined estimator to take account of within-cluster correlations. We also carry out extensive simulation studies to assess the performance of different estimators. The proposed methodology is substantially Much faster in computation and more stable in numerical results than the existing methods. We apply the proposed methodology to a dataset from a randomized clinical trial.

The right to a voice and the fight to be heard: The experience of being an ESL user in Australia

This paper focuses on the fundamental right to be heard, that is, the right to have one’s voice heard and listened to – to impose reception (Bourdieu, 1977). It focuses on the ways that non-mainstream English is heard and received in Australia, where despite public policy initiatives around equal opportunity, language continues to socially disadvantage people (Burridge & Mulder, 1998). English is the language of the mainstream and most people are monolingually English (Ozolins, 1993). English has no official status yet it remains dominant and its centrality is rarely challenged (Smolicz, 1995). This paper takes the position that the lack of language engagement in mainstream Australia leads to linguistic desensitisation. Writing in the US context where English is also the unofficial norm, Lippi-Green (1997) maintains that discrimination based on speech features or accent is commonly accepted and widely perceived as appropriate. In Australia, non-standard forms of English are often disparaged or devalued because they do not conform to the ‘standard’ (Burridge & Mulder, 1998). This paper argues that talk cannot be taken for granted: ‘spoken voices’ are critical tools for representing the self and negotiating and manifesting legitimacy within social groups (Miller, 2003). In multicultural, multilingual countries like Australia, the impact of the spoken voice, its message and how it is heard are critical tools for people seeking settlement, inclusion and access to facilities and services. Too often these rights are denied because of the way a person sounds. This paper reports a study conducted with a group that has been particularly vulnerable to ongoing ‘panics’ about language – international students. International education is the third largest revenue source for Australia (AEI, 2010) but has been beset by concerns from academics (Auditor-General, 2002) and the media about student language levels and falling work standards (e.g. Livingstone, 2004). Much of the focus has been high-stakes writing but with the ascendancy of project work in university assessment and the increasing emphasis on oracy, there is a call to recognise the salience of talk, especially among students using English as a second language (ESL) (Kettle & May, 2012). The study investigated the experiences of six international students in a Master of Education course at a large metropolitan university. It utilised data from student interviews, classroom observations, course materials, university policy documents and media reports to examine the ways that speaking and being heard impacted on the students’ learning and legitimacy in the course. The analysis drew on Fairclough’s (2003) model of the dialectical-relational Critical Discourse Analysis (CDA) to analyse the linguistic, discursive and social relations between the data texts and their conditions of production and interpretation, including the wider socio-political discourses on English, language difference, and second language use. The interests of the study were if and how discourses of marginalisation and discrimination manifested and if and how students recognised and responded to them pragmatically. Also how they juxtaposed with and/or contradicted the official rhetoric about diversity and inclusion. The underpinning rationale was that international students’ experiences can provide insights into the hidden politics and practices of being heard and afforded speaking rights as a second language speaker in Australia.

Heparin versus 0.9% sodium chloride intermittent flushing for the prevention of occlusion in long term central venous catheters in infants and children

Background Guidelines and clinical practice for the prevention of complications associated with central venous catheters (CVC) around the world vary greatly. Most institutions recommend the use of heparin to prevent occlusion, however there is debate regarding the need for heparin and evidence to suggest 0.9% sodium chloride (normal saline) may be as effective. The use of heparin is not without risk, may be unnecessary and is also associated with increased cost. Objectives To assess the clinical effects (benefits and harms) of intermittent flushing of heparin versus normal saline to prevent occlusion in long term central venous catheters in infants and children. Search Methods The Cochrane Vascular Trials Search Co-ordinator searched the Specialised Register (last searched April 2015) and the Cochrane Register of Studies (Issue 3, 2015). We also searched the reference lists of retrieved trials. Selection criteria Randomised controlled trials that compared the efficacy of normal saline with heparin to prevent occlusion of long term CVCs in infants and children aged up to 18 years of age were included. We excluded temporary CVCs and peripherally inserted central catheters (PICC). Data Collection and Analysis Two review authors independently assessed trial inclusion criteria, trial quality and extracted data. Rate ratios were calculated for two outcome measures - occlusion of the CVC and central line-associated blood stream infection. Other outcome measures included duration of catheter placement, inability to withdraw blood from the catheter, use of urokinase or recombinant tissue plasminogen, incidence of removal or re-insertion of the catheter, or both, and other CVC-related complications such as dislocation of CVCs, other CVC site infections and thrombosis. Main Results Three trials with a total of 245 participants were included in this review. The three trials directly compared the use of normal saline and heparin, however, between studies, all used different protocols for the standard and experimental arms with different concentrations of heparin and different frequency of flushes reported. In addition, not all studies reported on all outcomes. The quality of the evidence ranged from low to very low because there was no blinding, heterogeneity and inconsistency between studies was high and the confidence intervals were wide. CVC occlusion was assessed in all three trials (243 participants). We were able to pool the results of two trials for the outcomes of CVC occlusion and CVC-associated blood stream infection. The estimated rate ratio for CVC occlusion per 1000 catheter days between the normal saline and heparin group was 0.75 (95% CI 0.10 to 5.51, two studies, 229 participants, very low quality evidence). The estimated rate ratio for CVC-associated blood stream infection was 1.48 (95% CI 0.24 to 9.37, two studies, 231 participants; low quality evidence). The duration of catheter placement was reported to be similar between the two study arms, in one study (203 participants). Authors' Conclusions The review found that there was not enough evidence to determine the effects of intermittent flushing of heparin versus normal saline to prevent occlusion in long term central venous catheters in infants and children. Ultimately, if this evidence were available, the development of evidenced-based clinical practice guidelines and consistency of practice would be facilitated.

Improving the outcomes of foot and ankle surgery. Professional impact of the Australasian College of Podiatric Surgeons' audit tool

Background Surgery is an example of expanded practice scope that enhances podiatry and incorporates inter-professional collaboration. By 2050 demand for foot and ankle procedures is predicted to rise nationally by 61.9%. Performance management of this increase motivated the development of an online audit tool. Developed in collaboration with the Australasian College of Podiatric Surgeons (ACPS), the ACPS audit tool provides real-time data capture and reporting. It is the first audit tool designed in Australia to support and improve the outcomes of foot and ankle surgery. Methods Audit activity in general, orthopaedic, plastic and podiatric surgery was examined using a case study design. Audit participation enablers and barriers were explored. Case study results guided a Delphi survey of international experts experienced or associated with foot and ankle surgery. Delphi survey-derived consensus informed modification of a generic data set from the Royal Australasian College of Surgeons (RACS). Based on the Delphi survey findings the ACPS online audit tool was developed and piloted. Reliability and validity of data entry and usability of this new tool was then assessed with an online survey. Results The case study found surgeon attitudes and behaviours positively impacted audit participation, and also indicated that audit data should be: (1) available in real time, (2) identify practice change, (3) applicable for safety and quality management, and; (4) useful for peer review discussion. The Delphi process established consensus on audit variables to be captured, including the modified RACS generic data set. 382 cases of foot and ankle surgery were captured across 3 months using the new tool. Data entry was found to be valid and reliable. Real-time outcome reporting and practice change identification impacted positively on safety and quality management and assisted peer review discussion. An online survey showed high levels of usability. Conclusions Surgeon contribution to audit tool development resulted in 100% audit participation. The data from the ACPS audit tool supported the ACPS submission to the Medical Services Advisory Committee to list podiatric surgery under Medicare, an outcome noted by the Federal Minister of Health.

Effect of an interactive therapeutic robotic animal on engagement, mood states, agitation and psychotropic drug use in people with dementia: A cluster-randomised controlled trial protocol

Introduction: Apathy, agitated behaviours, loneliness and depression are common consequences of dementia. This trial aims to evaluate the effect of a robotic animal on behavioural and psychological symptoms of dementia in people with dementia living in long-term aged care. Methods and analysis: A cluster-randomised controlled trial with three treatment groups: PARO (robotic animal), Plush-Toy (non-robotic PARO) or Usual Care (Control). The nursing home sites are Australian Government approved and accredited facilities of 60 or more beds. The sites are located in South-East Queensland, Australia. A sample of 380 adults with a diagnosis of dementia, aged 60 years or older living in one of the participating facilities will be recruited. The intervention consists of three individual 15 min non-facilitated sessions with PARO or Plush- Toy per week, for a period of 10 weeks. The primary outcomes of interest are improvement in agitation, mood states and engagement. Secondary outcomes include sleep duration, step count, change in psychotropic medication use, change in treatment costs, and staff and family perceptions of PARO or Plush-Toy. Video data will be analysed using Noldus XT Pocket Observer; descriptive statistics will be used for participants’ demographics and outcome measures; cluster and individual level analyses to test all hypotheses and Generalised Linear Models for cluster level and Generalised Estimation Equations and/or Multi-level Modeling for individual level data. Ethics and dissemination: The study participants or their proxy will provide written informed consent. The Griffith University Human Research Ethics Committee has approved the study (NRS/03/14/HREC). The results of the study will provide evidence of the efficacy of a robotic animal as a psychosocial treatment for the behavioural and psychological symptoms of dementia. Findings will be presented at local and international conference meetings and published in peer-reviewed journals.