Using digital rights management for securing data in a medical research environment

We propose a digital rights management approach for sharing electronic health records in a health research facility and argue advantages of the approach. We also give an outline of the system under development and our implementation of the security features and discuss challenges that we faced and future directions.

Children and consent to medical treatment

This chapter deals with the law concerning children and consent to medical treatment. Where a child under the age of 18 requires medical treatment, issues arise as to who may lawfully consent to the treatment and under what circumstances. Depending on the circumstances, consent may be given by the child’s parent or guardian; the child; or a court. The chapter provides a thorough treatment of Australian law about these issues and circumstances.

Response to the apology : Queenslanders reflect : a State Library of Queensland project

On the 13th February 2008 Prime Minister Kevin Rudd made an apology to Australia’s Indigenous Peoples on behalf of the Australian Parliament. The State Library of Queensland (SLQ) with assistance from Queensland University of Technology and Queensland’s Aboriginal and Torres Strait Islander communities, has captured responses to this historic event. ‘Responses to the 2008 Apology’ is a collection of digital stories created as part of this research initiative. Until recently, digital storytelling has not generally been treated as a necessary addition to the research collections of Australian libraries. However, libraries increasingly aim to promote new literacies and active audiences as they seek innovative ways to encourage life-long learning by their users, and digital storytelling is one methodology that can contribute to these goals. The State Library of Queensland is the only Australian State Library to have undertaken a major role in the collection of digital stories. They currently lead the way with their Queensland Stories digital storytelling program. This presentation will report findings and outcomes from this research project.

Finding a way through the ethical and legal maze : withdrawing medical treatment and euthanasia

This article examines Finnis' and Keown's claim that the intention/foresight distinction should be used as the basis for the lawfulness of withholding and withdrawing medical treatment, rather than the act/omission distinction which is currently used. I argue that whilst the intention/foresight distinction is sound and can apply to palliative pain relief hastening death, it cannot be applied to withholding and withdrawing medical treatment. Instead, the act/omission distinction remains the better basis for the lawfulness of withholding and withdrawal, and law reform is consequently unnecessary.

Recent developments : loss of chance in medical litigation : Tabet v Gett [2010] HCA 12.

Following the judgement of the High Court in Tabet v Gett [2010]HCA 12 handed down on 21 April 2010 it appears that in Australia there is now very limited scope for recovery in negligence for the loss of a chance of a better medical outcome.

Analysis of the effect of negation on information retrieval of medical data

Most information retrieval (IR) models treat the presence of a term within a document as an indication that the document is somehow "about" that term, they do not take into account when a term might be explicitly negated. Medical data, by its nature, contains a high frequency of negated terms - e.g. "review of systems showed no chest pain or shortness of breath". This papers presents a study of the effects of negation on information retrieval. We present a number of experiments to determine whether negation has a significant negative affect on IR performance and whether language models that take negation into account might improve performance. We use a collection of real medical records as our test corpus. Our findings are that negation has some affect on system performance, but this will likely be confined to domains such as medical data where negation is prevalent.

Preparing library staff for research support services at QUT

INTRODUCTION: Queensland University of Technology (QUT) Library is partnering with High Performance Computing (HPC) services and the Division of Research and Commercialisation to develop and deliver a range of integrated research support services and systems designed to enhance the research capabilities of the University. Existing and developing research support services include - support for publishing strategies including open access, bibliographic citation and ranking services, research data management, use of online collaboration tools, online survey tools, quantitative and qualitative data analysis, content management and storage solutions. In order to deliver timely and effective research referral and support services, it is imperative that library staff maintain their awareness of, and develop expertise in new eResearch methods and technologies. ---------- METHODS: In 2009/10 QUT Library initiated an online survey for support staff and researchers and a series of focus groups for researchers aimed at gaining a better understanding of current and future eresearch practices and skills. These would better inform the development of a research skills training program and the development of new research support services. The Library and HPC also implemented a program of seminars and workshops designed to introduce key library staff to a broad range of eresearch concepts and technologies. Feedback was obtained after each training session. A number of new services were implemented throughout 2009 and 2010. ---------- RESULTS: Key findings of the survey and focus groups are related to the development of the staff development program. Feedback from program attendees is provided and evaluated. The staff development program is assessed in terms of its success to support the implementation of new research support services. --------- CONCLUSIONS QUT Library has embarked on an ambitious awareness and skills development program to assist Library staff transition a period of rapid change and broadening scope for the Library. Successes and challenges of the program are discussed. A number of recommendations are made in retrospect and also looking forward to the future training needs of Library staff to support the University’s future research goals.

Becoming “Librarian 2.0” : the skills, knowledge, and attributes required by library and information science professionals in a Web 2.0 world (and beyond)

In 2005, Stephen Abram, vice president of Innovation at SirsiDynix, challenged library and information science (LIS) professionals to start becoming “librarian 2.0.” In the last few years, discussion and debate about the “core competencies” needed by librarian 2.0 have appeared in the “biblioblogosphere” (blogs written by LIS professionals). However, beyond these informal blog discussions few systematic and empirically based studies have taken place. This article will discuss a research project that fills this gap. Funded by the Australian Learning and Teaching Council, the project identifies the key skills, knowledge, and attributes required by “librarian 2.0.” Eighty-one members of the Australian LIS profession participated in a series of focus groups. Eight themes emerged as being critical to “librarian 2.0”: technology, communication, teamwork, user focus, business savvy, evidence based practice, learning and education, and personal traits. This article will provide a detailed discussion on each of these themes. The study’s findings also suggest that “librarian 2.0” is a state of mind, and that the Australian LIS profession is undergoing a significant shift in “attitude.”

Chlamydia pneumoniae is genetically diverse in animals and appears to have crossed the host barrier to humans on (at least) two occasions

Chlamydia pneumoniae is a common human and animal pathogen associated with a wide range of diseases. Since the first isolation of C. pneumoniae TWAR in 1965, all human isolates have been essentially clonal, providing little evolutionary insight. To address this gap, we investigated the genetic diversity of 30 isolates from diverse geographical locations, from both human and animal origin (amphibian, reptilian, equine and marsupial). Based on the level of variation that we observed at 23 discreet gene loci, it was clearly evident that the animal isolates were more diverse than the isolates of human origin. Furthermore, we show that C. pneumoniae isolates could be grouped into five major genotypes, A-E, with A, B, D and E genotypes linked by geographical location, whereas genotype C was found across multiple continents. Our evidence strongly supports two separate animal-to-human cross species transfer events in the evolutionary history of this pathogen. The C. pneumoniae human genotype identified in the USA, Canada, Taiwan, Iran, Japan, Korea and Australia (non- Indigenous) most likely originated from a single amphibian or reptilian lineage, which appears to have been previously geographically widespread. We identified a separate human lineage present in two Australian Indigenous isolates (independent geographical locations). This lineage is distinct and is present in Australian amphibians as well as a range of Australian marsupials.

The circadian response of intrinsically photosensitive retinal ganglion cells

Intrinsically photosensitive retinal ganglion cells (ipRGC) signal environmental light level to the central circadian clock and contribute to the pupil light reflex. It is unknown if ipRGC activity is subject to extrinsic (central) or intrinsic (retinal) network-mediated circadian modulation during light entrainment and phase shifting. Eleven younger persons (18–30 years) with no ophthalmological, medical or sleep disorders participated. The activity of the inner (ipRGC) and outer retina (cone photoreceptors) was assessed hourly using the pupil light reflex during a 24 h period of constant environmental illumination (10 lux). Exogenous circadian cues of activity, sleep, posture, caffeine, ambient temperature, caloric intake and ambient illumination were controlled. Dim-light melatonin onset (DLMO) was determined from salivary melatonin assay at hourly intervals, and participant melatonin onset values were set to 14 h to adjust clock time to circadian time. Here we demonstrate in humans that the ipRGC controlled post-illumination pupil response has a circadian rhythm independent of external light cues. This circadian variation precedes melatonin onset and the minimum ipRGC driven pupil response occurs post melatonin onset. Outer retinal photoreceptor contributions to the inner retinal ipRGC driven post-illumination pupil response also show circadian variation whereas direct outer retinal cone inputs to the pupil light reflex do not, indicating that intrinsically photosensitive (melanopsin) retinal ganglion cells mediate this circadian variation.

Anticipated behaviours of emergency prehospital medical care providers during an influenza pandemic

Introduction: Emergency prehospital medical care providers are frontline health workers during emergencies. However, little is known about their attitudes, perceptions, and likely behaviors during emergency conditions. Understanding these attitudes and behaviors is crucial to mitigating the psychological and operational effects of biohazard events such as pandemic influenza, and will support the business continuity of essential prehospital services. ----- ----- Problem: This study was designed to investigate the association between knowledge and attitudes regarding avian influenza on likely behavioral responses of Australian emergency prehospital medical care providers in pandemic conditions. ----- ----- Methods: Using a reply-paid postal questionnaire, the knowledge and attitudes of a national, stratified, random sample of the Australian emergency prehospital medical care workforce in relation to pandemic influenza were investigated. In addition to knowledge and attitudes, there were five measures of anticipated behavior during pandemic conditions: (1) preparedness to wear personal protective equipment (PPE); (2) preparedness to change role; (3) willingness to work; and likely refusal to work with colleagues who were exposed to (4) known and (5) suspected influenza. Multiple logistic regression models were constructed to determine the independent predictors of each of the anticipated behaviors, while controlling for other relevant variables. ----- ----- Results: Almost half (43%) of the 725 emergency prehospital medical care personnel who responded to the survey indicated that they would be unwilling to work during pandemic conditions; one-quarter indicated that they would not be prepared to work in PPE; and one-third would refuse to work with a colleague exposed to a known case of pandemic human influenza. Willingness to work during a pandemic (OR = 1.41; 95% CI = 1.0–1.9), and willingness to change roles (OR = 1.44; 95% CI = 1.04–2.0) significantly increased with adequate knowledge about infectious agents generally. Generally, refusal to work with exposed (OR = 0.48; 95% CI = 0.3–0.7) or potentially exposed (OR = 0.43; 95% CI = 0.3–0.6) colleagues significantly decreased with adequate knowledge about infectious agents. Confidence in the employer’s capacity to respond appropriately to a pandemic significantly increased employee willingness to work (OR = 2.83; 95% CI = 1.9–4.1); willingness to change roles during a pandemic (OR = 1.52; 95% CI = 1.1–2.1); preparedness to wear PPE (OR = 1.68; 95% CI = 1.1–2.5); and significantly decreased the likelihood of refusing to work with colleagues exposed to (suspected) influenza (OR = 0.59; 95% CI = 0.4–0.9). ----- ----- Conclusions:These findings indicate that education and training alone will not adequately prepare the emergency prehospital medical workforce for a pandemic. It is crucial to address the concerns of ambulance personnel and the perceived concerns of their relationship with partners in order to maintain an effective prehospital emergency medical care service during pandemic conditions.

Attitudes to living and working in pandemic conditions among emergency prehospital medical care personnel

Introduction: Little is known about the risk perceptions and attitudes of healthcare personnel, especially of emergency prehospital medical care personnel, regarding the possibility of an outbreak or epidemic event. Problem: This study was designed to investigate pre-event knowledge and attitudes of a national sample of the emergency prehospital medical care providers in relation to a potential human influenza pandemic, and to determine predictors of these attitudes. Methods: Surveys were distributed to a random, cross-sectional sample of 20% of the Australian emergency prehospital medical care workforce (n = 2,929), stratified by the nine services operating in Australia, as well as by gender and location. The surveys included: (1) demographic information; (2) knowledge of influenza; and (3) attitudes and perceptions related to working during influenza pandemic conditions. Multiple logistic regression models were constructed to identify predictors of pandemic-related risk perceptions. Results: Among the 725 Australian emergency prehospital medical care personnel who responded, 89% were very anxious about working during pandemic conditions, and 85% perceived a high personal risk associated with working in such conditions. In general, respondents demonstrated poor knowledge in relation to avian influenza, influenza generally, and infection transmission methods. Less than 5% of respondents perceived that they had adequate education/training about avian influenza. Logistic regression analyses indicate that, in managing the attitudes and risk perceptions of emergency prehospital medical care staff, particular attention should be directed toward the paid, male workforce (as opposed to volunteers), and on personnel whose relationship partners do not work in the health industry. Conclusions: These results highlight the potentially crucial role of education and training in pandemic preparedness. Organizations that provide emergency prehospital medical care must address this apparent lack of knowledge regarding infection transmission, and procedures for protection and decontamination. Careful management of the perceptions of emergency prehospital medical care personnel during a pandemic is likely to be critical in achieving an effective response to a widespread outbreak of infectious disease.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 1 (New South Wales)

This is the first article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in New South Wales. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in New South Wales.

The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment : Part 2 (Queensland)

This is the second article in a series of three that examines the legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. This article considers the position in Queensland, including the parens patriae jurisdiction of the Supreme Court. A review of the law in this State reveals that medical professionals play significant legal roles in these decisions. However, the law is problematic in a number of respects and this is likely to impede medical professionals’ legal knowledge in this area. The article examines the level of training medical professionals receive on issues such as advance health directives and substitute decision-making, and the available empirical evidence as to the state of medical professionals’ knowledge of the law at the end of life. It concludes that there are gaps in legal knowledge and that law reform is needed in Queensland.

Australian Library and Information Studies (LIS) researchers' ranking of LIS journals

The paper describes the processes and the outcomes of the ranking of LIS journal titles by Australia’s LIS researchers during 2007-8, firstly through the Australian federal government’s Research Quality Framework (RQF) process and then its replacement, the Excellence in Research for Australia (ERA) initiative. The requirement to rank the journals titles used came from discussions held at the RQF panel meeting held in February 2007 in Canberra, Australia. While it was recognised that the Web of Science (formerly ISI) journal impact approach of journal acceptance for measures of research quality and impact might not work for LIS, it was apparent that this model would be the default if no other ranking of journal titles became apparent. Although an increasing number of LIS and related discipline journals were appearing in the Web of Science listed rankings, the number was few and it was thus decided by the Australian LIS research community to undertake the ranking exercise.