Journal articles on the topic 'Nurse and patient Research Victoria Melbourne'

Background A number of studies have shown promising performance of artificial intelligence (AI) algorithms for diagnosis of lesions in skin cancer. To date, none of these have assessed algorithm performance in the real-world setting. Objective The aim of this project is to evaluate practical issues of implementing a convolutional neural network developed by MoleMap Ltd and Monash University eResearch in the clinical setting. Methods Participants were recruited from the Alfred Hospital and Skin Health Institute, Melbourne, Australia, from November 1, 2019, to May 30, 2021. Any skin lesions of concern and at least two additional lesions were imaged using a proprietary dermoscopic camera. Images were uploaded directly to the study database by the research nurse via a custom interface installed on a clinic laptop. Doctors recorded their diagnosis and management plan for each lesion in real time. A pre-post study design was used. In the preintervention period, participating doctors were blinded to AI lesion assessment. An interim safety analysis for AI accuracy was then performed. In the postintervention period, the AI algorithm classified lesions as benign, malignant, or uncertain after the doctors’ initial assessment had been made. Doctors then had the opportunity to record an updated diagnosis and management plan. After discussing the AI diagnosis with the patient, a final management plan was agreed upon. Results Participants at both sites were high risk (for example, having a history of melanoma or being transplant recipients). 743 lesions were imaged in 214 participants. In total, 28 dermatology trainees and 17 consultant dermatologists provided diagnoses and management decisions, and 3 experienced teledermatologists provided remote assessments. A dedicated research nurse was essential to oversee study processes, maintain study documents, and assist with clinical workflow. In cases where AI algorithm and consultant dermatologist diagnoses were discordant, participant anxiety was an important factor in the final agreed management plan to biopsy or not. Conclusions Although AI algorithms are likely to be of most use in the primary care setting, higher event rates in specialist settings are important for the initial assessment of algorithm safety and accuracy. This study highlighted the importance of considering workflow issues and doctor-patient-AI interactions prior to larger-scale trials in community-based practices. Acknowledgments This research was supported by the Victorian Medical Research Acceleration Fund, with 1:1 contribution from MoleMap Ltd. VM is supported by the National Health and Medical Research Council Early Career Fellowship. CF is supported by the Monash University Research Training Program Scholarship. Conflicts of Interest SM is head of clinical research and regulatory affairs at Kahu.ai Ltd, a subsidiary of MoleMap Ltd. MH was the chief medical officer and a director of MoleMap Ltd, and holds shares in MoleMap Ltd. Trial Registration ClinicalTrials.gov NCT04040114; https://clinicaltrials.gov/ct2/show/NCT04040114

IntroductionAs cancer treatments may impact on fertility, a high priority for young patients with breast cancer is access to evidence-based, personalised information for them and their healthcare providers to guide treatment and fertility-related decisions prior to cancer treatment. Current tools to predict fertility outcomes after breast cancer treatments are imprecise and do not offer individualised prediction. To address the gap, we are developing a novel personalised infertility risk prediction tool (FoRECAsT) for premenopausal patients with breast cancer that considers current reproductive status, planned chemotherapy and adjuvant endocrine therapy to determine likely post-treatment infertility. The aim of this study is to explore the feasibility of implementing this FoRECAsT tool into clinical practice by exploring the barriers and facilitators of its use among patients and healthcare providers.Methods and analysisA cross-sectional exploratory study is being conducted using semistructured in-depth telephone interviews with 15–20 participants each from the following groups: (1) premenopausal patients with breast cancer younger than 40, diagnosed within last 5 years, (2) breast surgeons, (3) breast medical oncologists, (4) breast care nurses (5) fertility specialists and (6) fertility preservation nurses. Patients with breast cancer are being recruited from the joint Breast Service of three affiliated institutions of Victorian Comprehensive Cancer Centre in Melbourne, Australia—Peter MacCallum Cancer Centre, Royal Melbourne Hospital and Royal Women’s Hospital, and clinicians are being recruited from across Australia. Interviews are being audio recorded, transcribed verbatim and imported into qualitative data analysis software to facilitate data management and analyses.Ethics and disseminationThe study protocol has been approved by Melbourne Health Human Research Ethics Committee, Australia (HREC number: 2017.163). Confidentiality and privacy are maintained at every stage of the study. Findings will be disseminated through peer-reviewed scholarly and scientific journals, national and international conference presentations, social media, broadcast media, print media, internet and various community/stakeholder engagement activities.

Introduction. To consider the use of medical chaperones during certain clinical examinations is important whether one practises as a specialist, nurse, medical student, or generalist. Chaperones have been used by doctors conducting intimate examinations for many years but their true extent remains largely unknown. Until recently, there was no national guidance in Australia. Aim. To explore the attitudes and practices of general practitioners (GP) regarding their use of chaperones in urban Melbourne, Australia. Method. Qualitative two focus groups involving seventeen GPs from two locations. Discussions were audio-taped, transcribed verbatim and analysed. Results. Common themes and subthemes emerged which were grouped into three main areas: (a) practitioner-related, (b) patient-related and (c) practice related. Discussion. This is the first study from an Australian primary care perspective to gauge the attitudes and experiences of GPs on their use of chaperones. It will provide vital information to inform the next step of extending this research to a national GP audience. From an international perspective, this study provides an excellent template for other primary care clinicians to conduct research in this important field of doctor-patient relationship.

Since April 1997, in Melbourne, Australia, speech pathologists have collaborated to establish a prospective database of functional outcomes of speech, swallowing and voice for patients undergoing head and neck cancer treatments.Staff at eight acute care hospitals, all of which offer speech pathology for head and neck cancer services in Victoria, are contributing data, collated centrally, in an agreed pro forma.Early results are given (after 12 months’ data collection). The implications for clinically-based research, and the future potential for benchmarking outcomes – by expansion of the rehabilitation database beyond the current participating sites – is discussed.This paper outlines the rationale of establishing the database is multicentred, and explores some of the complexities involved, including the challenges inherent in long-term accurate data collection in the head and neck cancer patient population. This work represents the development of an appropriate, usable tool for data collection on functional outcomes.

Research utilising de-identified patient health information extracted from electronic medical records (EMRs) from general practices has steadily grown in recent years in response to calls to increase use of health data for research and other secondary purposes in Australia. Little is known about the views of key primary care personnel on this issue, which are important, as they may influence whether practices agree to provide EMR data for research. This exploratory qualitative study investigated the attitudes and beliefs of general practitioners (GPs), practice managers (PMs) and practice nurses (PNs) around sharing de-identified EMR patient health information with researchers. Semi-structured interviews were conducted with 11 participants (6 GPs, 3 PMs and 2 PNs) recruited via purposive sampling from general practices in Victoria, Australia. Transcripts were coded and thematically analysed. Participants were generally enthusiastic about research utilising de-identified health information extracted from EMRs for altruistic reasons, including: positive effects on primary care research, clinical practice and population health outcomes. Concerns raised included patient privacy and data breaches, third-party use of extracted data and patient consent. These findings can provide guidance to researchers and policymakers in designing and implementing projects involving de-identified health information extracted from EMRs.

290 Background: Ovarian cancer (OC) is a common, often fatal disease where 1/4 of cases are due to hereditary syndromes. Genetic screening of OC patients provides access to targeted treatments and screening recommendations. Patients are currently referred to a virtual, group, pre-counseling seminar, delivered by a Nurse Practitioner, where consent for germline genetic testing is obtained and results are delivered later by a Genetic Counsellor (GC). Previously, we found group pre-counseling to be an effective method to decrease wait times from diagnosis to test results. The purpose of this study was to evaluate the patient seminar experience using the previously validated, Genetic Counselling Outcome Scale (GCOS-24). BC Cancer- Victoria is a satellite of BC Cancer, providing tertiary cancer care to a population of ̃1.2 million. Methods: We completed a REB approved, prospective study recruiting patients referred to the group pre-counseling consenting seminar. The GCOS-24 was delivered electronically both pre (1) and post (2) attendance at the seminar, and 4 weeks post genetic counselling visit (3). Inclusion criteria included OC patients referred for germline BRCA testing between Jan 1, 2021, to Feb 28, 2022, > 18 years old who attended the group consenting seminar. Patients who could not communicate in English were excluded. Data was stored electronically via REDCap, a secure web-based platform. Results: Thirty-eight patients attended the seminar and 28 consented to participate and completed the first questionnaire. Twenty-five patients completed the second questionnaire and 21 completed the third. The average age was 67, with 80% high grade serous, 11% low grade, 6% clear cell and 3% endometrioid OC subtypes. Forty- nine percent of participants were from Victoria area, and 11% were 225+ km away. The average GCOS-24 score for pre seminar participants was 111, post seminar 121 and post GC’s appointment 124. Twelve (52%) patients scored minimum clinically important difference (MCID) increase between questionnaires 1 and 2, and 14 (67%) patients scored MCID increase between questionnaires 1 and 3. The questions reflecting the most improvement in average scores between questionnaires 1 and 3 were exploring knowledge and emotions. Conclusions: Virtual group pre-counseling sessions for OC patients are feasible and allow germline genetic testing access to a geographically diverse group of eligible patients. Mean GCO-24 score almost reached MCID between pre seminar and post seminar visit and did reach MCID between pre counselling and post GC visit. There was a general trend to improved scores as patients moved from counselling naïve to pre-counseling to completed GC appointment. Virtual pre-counseling seminars should be considered as high impact, resource light method of improving access to germline genetic counselling for OC patients.

Clinical Registries are established to provide a clinically credible means for monitoring and benchmarking healthcare processes and outcomes, to identify areas for improvement, and drive strategies for improving patient care. Clinical Registries are used to assess changes in clinical practice, appropriateness of care and health outcomes over time. The American Heart Association Policy Statement in April 2011 called for expanding the application for existing and future Clinical Registries, with well-designed Clinical Registry programs. Concurrently, in Australia, and similarly within the United States and United Kingdom, there has been an increased focus on performance measurement for quality and patient safety. Within Victoria, the Victorian Clinical Governance Policy Framework outlines clinical effectiveness as one of the four domains of Clinical Governance As Clinical Registries evaluate effectiveness and safety of patient care by measuring patient outcomes compared with peers, the use of Clinical Registries data to improve a health service’s quality of care seems intuitive. A mixed methods approach was utilised, involving (1) semi-structured interviews and (2) documentation audit in this study conducted at Austin Health, a major tertiary teaching hospital in North-Eastern metropolitan Melbourne, affiliated with the University of Melbourne and various research institutes within Austin LifeSciences. Although many studies have highlighted the benefits of data collected via individual Clinical Registries, [5,6] the level of voluntary medical staff participation in Clinical Registries at a health service level is yet to be established. The aim of this study was to document the level of medical staff involvement for Clinical Registries within a major tertiary teaching hospital, and the level of reporting into Quality Committees within the organisation. This study demonstrates that along with a very high level of medical staff participation in Clinical Registries, there is a lack of systematic reporting of Registries data into quality committees beyond unit level, and utilisation of such data to reflect upon practice and drive quality improvement. Abbreviations: CREPS – Centre for Excellence in Patient Safety; CSU – Clinical Services Unit; HOU – Heads of Unit; VASM – Victorian Audit of Surgical Mortality.

IntroductionPoor patient assessment results in undetected clinical deterioration. Yet, there is no standardised assessment framework for >29 000 Australian emergency nurses. To reduce clinical variation and increase safety and quality of initial emergency nursing care, the evidence-based emergency nursing framework HIRAID (History, Identify Red flags, Assessment, Interventions, Diagnostics, communication and reassessment) was developed and piloted. This paper presents the rationale and protocol for a multicentre clinical trial of HIRAID.Methods and analysisUsing an effectiveness-implementation hybrid design, the study incorporates a stepped-wedge cluster randomised controlled trial of HIRAID at 31 emergency departments (EDs) in New South Wales, Victoria and Queensland. The primary outcomes are incidence of inpatient deterioration related to ED care, time to analgesia, patient satisfaction and medical satisfaction with nursing clinical handover (effectiveness). Strategies that optimise HIRAID uptake (implementation) and implementation fidelity will be determined to assess if HIRAID was implemented as intended at all sites.Ethics and disseminationEthics has been approved for NSW sites through Greater Western Human Research Ethics Committee (2020/ETH02164), and for Victoria and Queensland sites through Royal Brisbane & Woman’s Hospital Human Research Ethics Committee (2021/QRBW/80026). The final phase of the study will integrate the findings in a toolkit for national rollout. A dissemination, communications (variety of platforms) and upscaling strategy will be designed and actioned with the organisations that influence state and national level health policy and emergency nurse education, including the Australian Commission for Quality and Safety in Health Care. Scaling up of findings could be achieved by embedding HIRAID into national transition to nursing programmes, ‘business as usual’ ED training schedules and university curricula.Trial registration numberACTRN12621001456842.

Background: Trust has been identified as a vital value in the nurse–patient relationship. Although increasingly the subject of empirical inquiries, the specific processes used by nurses to foster trust in nurse–patient relationships with older immigrants of non-English speaking backgrounds hospitalised for end-of-life care have not been investigated. Aims: To explore and describe the specific processes that nurses use to foster trust and overcome possible cultural mistrust when caring for older immigrants of non-English speaking backgrounds hospitalised for end-of-life care. Research design: A qualitative descriptive approach was used. Twenty-two registered nurses were recruited from four metropolitan health services in Melbourne, Australia. Ethical considerations: Research approval was granted by the Human Research Ethics Committees of the host institution and four participating health services. Findings: Thematic analysis revealed that fostering trust encompassed the following three commensurate stages: establishing trust, strengthening trust and sustaining trust. Underpinning the successful achievement of these stages was the nurses’ moral commitment (reflected in their intentional, conscious and conscientious approach) to fostering trust as an essential ingredient of quality end-of-life care. Discussion: This study has shown that while professional competencies are important to providing quality end-of-life care to older immigrant patients of non-English speaking backgrounds, it is a nurse’s moral commitment to fostering trust that may ultimately lay the foundations for a trusting quality care relationship to be established and sustained. Conclusion: This study has captured the processes used by nurses to foster trust as an essential element of quality end-of-life care in older immigrants. The characteristics of trust and the different factors influencing its expression in diverse cultural contexts are, however, under-researched. Accordingly, gaps remain in the knowledge and understanding of the specific cultural nuances and manifestations of trust across and within different cultures. This is an area that is germane to further cross-cultural and international collaborative scholarly inquiry and research.

This article seeks to review the Australian healthcare system and compare it to similar systems in other countries to highlight the main issues and problems. A literature search for articles relating to the Australian and other developed countries’ healthcare systems was conducted by using Google and the library of Victoria University, Melbourne. Data from the websites of the Commonwealth of Australia, the Australian Institute of Health and Welfare, the Australian Productivity Commission, the Organisation for Economic Co-operation and Development and the World Bank have also been used. Although care within the Australian healthcare system is among the best in the world, there is a need to change the paradigm currently being used to measure the outcomes and allocate resources. The Australian healthcare system is potentially dealing with two main problems: (a) resource allocation, and (b) performance and patient outcomes improvements. An interdisciplinary research approach in the areas of performance measurement, quality and patient outcomes improvement could be adopted to discover new insights, by using the policy implementation error/efficiency and bureaucratic capacity. Hospital managers, executives and healthcare management practitioners could use an interdisciplinary approach to design new performance measurement models, in which financial performance, quality, healthcare and patient outcomes are blended in, for resource allocation and performance improvement. This article recommends that public policy implementation error and the bureaucratic capacity models be applied to healthcare to optimise the outcomes for the healthcare system in Australia. In addition, it highlights the need for evaluation of the current reimbursement method, freedom of choice to patients and a regular scrutiny of the appropriateness of care.

279 Background: The PCSC Program was initiated in 2013 at the Vancouver Prostate Centre to provide a comprehensive program for patients and partners with prostate cancer. This program provides educational sessions (ES) and clinical services, including decision-making for primary therapy, sexual health, pelvic floor physiotherapy, hormone therapy, counseling, exercise, and nutrition for patients in BC, Canada. In 2016, the PCSC Program expanded to BC Cancer Victoria and in 2017 to other BC Cancer sites. In 2018, medical oncologists (MDs) in Victoria (JR, SP) developed an Education Module addressing treatment options for men with metastatic hormone sensitive (mHSPC) and metastatic castration resistant (mCRPC) disease. MDs delivered in-person ES in Victoria in 2018 and, in 2019, added a virtual platform (VP) option. From 3-5/2020, the ESs were on hold due to the COVID pandemic and parental leaves. In 6/2020, the ESs resumed only on VP, and the PCSC Oncology Nurse Practitioner (NP), NI, gave the presentations for the MDs on leave. In 10/2020, due to a changing standard of care for mHSPC, the PCSC team consolidated the two ESs into one. We report on the evolution of this Education Module in response to both the changing standard of care and the COVID pandemic. Methods: We prospectively collected attendance and patient characteristic metrics from all ES for men with mPC. We tracked presenter type (MD vs. NP) and prospectively collected anonymous patient satisfaction questionnaires. Results: From 1/2018 to 1/2021, 100 men registered for 27 ES; 81 men, 41 partners, and 2 family members actually attended. 48/75 (64%) men were white, 39/75 (52%) retired, and 56/75 (74.7%) married. 47 men attended 12 mHSPC ES, 13 men attended ten mCRPC ES, and 17 attended four consolidated ES. MDs presented 15 ES, and the NP presented 12 ES. Responses to questions on 70 satisfaction surveys were similar for MD vs. NP presenters. 9 responders to the recently added VP-specific questions said they agreed (4) or strongly agreed (5) that it was beneficial to watch the ES at home on a computer. The Table below shows attendance per site per year. Conclusions: The ESs for men with mPC were well-received. Although there was a VP option before COVID, attendance increased significantly after the lockdown as patients and providers became more familiar with VPs. Satisfaction surveys confirmed that an NP could deliver the ES rather than MD. Consolidation of the mHSPC and mCRPC ES reflected the changing standard of care and resulted in more efficient use of presenter time. Virtual delivery of the sessions provided greater access to those living in distant or remote areas of the province and those in lockdown during the COVID pandemic. [Table: see text]

Background Access to rehabilitation to support cancer survivors to exercise is poor. Group exercise–based rehabilitation may be delivered remotely, but no trials have currently evaluated their efficacy. Objective We aimed to evaluate the efficacy of a group exercise–based cancer rehabilitation program delivered via telehealth compared to usual care for improving the quality of life of cancer survivors. Methods A parallel, assessor-blinded, pragmatic randomized controlled trial with embedded cost and qualitative analysis will be completed. In total, 116 cancer survivors will be recruited from a metropolitan health network in Melbourne, Victoria, Australia. The experimental group will attend an 8-week, twice-weekly, 60-minute exercise group session supervised via videoconferencing supplemented by a web-based home exercise program and information portal. The comparison group will receive usual care including standardized exercise advice and written information. Assessments will be completed at weeks 0 (baseline), 9 (post intervention), and 26 (follow-up). The primary outcome will be health-related quality of life measured using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire at week 9. Secondary measures include walking capacity (6-minute walk test), physical activity (activPAL accelerometer), self-efficacy (Health Action Process Approach Questionnaire), and adverse events. Health service data including hospital length of stay, hospital readmissions, and emergency department presentations will be recorded. Semistructured interviews will be completed within an interpretive description framework to explore the patient experience. The primary outcome will be analyzed using linear mixed effects models. A cost-effectiveness analysis will also be performed. Results The trial commenced in April 2022. As of June 2022, we enrolled 14 participants. Conclusions This trial will inform the future implementation of cancer rehabilitation by providing important data about efficacy, safety, cost, and patient experience. Trial Registration Australian New Zealand Clinical Trials Registry ACTRN12621001417875; https://tinyurl.com/yc5crwtr International Registered Report Identifier (IRRID) PRR1-10.2196/38553

Abstract Background and Aims The detection of sequence variants and copy number changes can improve diagnosis, inform prognosis and guide treatment in patients with bone marrow failure syndromes (BMFS). We aimed to establish and prospectively assess the impact of comprehensive genomic evaluation on diagnostic categorisation and clinical outcomes in patients with genomically uncharacterised BMFS. Methods Eligible patients were recruited from four participating institutions across Victoria, Australia. Inclusion criteria were (i) age >3 months (ii) clinicopathological diagnosis or suspicion of either acquired aplastic anaemia (AA), inherited BMFS, hypoplastic myelodysplastic syndrome (hMDS) or a BMFS with marrow hypoplasia/aplasia not able to be definitively categorised. Patients initially underwent 90-gene targeted sequencing (Peter MacCallum Cancer Centre PanHaem and Myeloid Amplicon next generation sequencing [NGS] panels) for rapid turnaround of accredited results for clinical decision-making. In addition, whole exome sequencing (WES), whole genome copy number analysis, NGS T-cell receptor β (TRB) repertoire assessment and longitudinal monitoring of selected mutations by digital droplet PCR (ddPCR) were performed. All patients received pre-test counselling and assessment. Genomic results were reviewed in centralised multidisciplinary case conferences including the treating clinician, molecular haematopathologists, medical scientists, clinical geneticists and genetic counsellors. Results 100 patients were enrolled. Median age was 25 years (range 3 months - 80 years); 39% were under 18 years. Detection of sequence variants or copy number abnormalities led to or confirmed a diagnosis of either an inherited or acquired BMFS in 36 patients. In 17 patients a diagnosis of an inherited BMFS was positively made by detection of pathogenic sequence variants or copy number changes in FANCA(1 patient [pt]), FANCM(1 pt), FANCI(1 pt), RAD51C(1 pt), HAX1(1 pt), SBDS(1 pt), DNAJC21(1 pt), RPS19(5 pts), RPL35A(1 pt), TERT(1 pt), TINF2(1 pt) and SAMD9L(1 pt). In five patients the clinical BMFS was considered undifferentiated without a clear candidate gene suspected on phenotypic features prior to genomic evaluation. Importantly, an established diagnosis of AA was altered to an inherited BMFS by genomic characterisation in two patients (SAMD9L, FANCA). In 19 patients pathogenic sequence variants or copy number changes were detected either leading to or confirming a diagnosis of an acquired BMFS (paroxysmal nocturnal haemoglobinuria, hMDS or AA). Pathogenic sequence variants were detected in TET2(n=5), RUNX1(n=4), ASXL1(n=3), PIGA(n=3), DNMT3A(n=3),CBL(n=2), and BCOR/IDH2/SF3B1/SRSF2/TP53/U2AF1(n=1 each). Sequencing-detected copy number abnormalities included loss of chromosome 7 (n=6), losses on chromosome 5q (n=2) and copy number loss of ETV6(n=2). Longitudinal monitoring of an acquired truncating RUNX1 mutation by ddPCR resulted in one patient undergoing allogeneic bone marrow transplant for a progressively rising allelic burden. There was a trend towards more restricted TRB diversity in patients with genomically-defined acquired BMFS versus inherited BMFS (normalised Shannon index ≤0.85, 36.4% vs 0%, p=0.09). Conclusion We have established and evaluated a model of comprehensive multimodal genomic characterisation and multidisciplinary care for 100 patients with BMFS. Our results demonstrate a significant contribution to diagnostic categorisation and patient care in this area of clinical need. Disclosures Lieschke: CSL Behring Australia: Consultancy. Tam:Janssen: Honoraria, Research Funding; Gilead: Honoraria; AbbVie: Honoraria, Research Funding; Pharmacyclics: Honoraria, Travel funding; Pharmacyclics: Honoraria; Beigene: Honoraria, Other: Travel funding; Roche: Honoraria; Beigene: Honoraria, Other: Travel funding; Gilead: Honoraria; Roche: Honoraria; AbbVie: Honoraria, Research Funding.

IntroductionThe sexually transmitted infection chlamydia can cause significant complications, particularly among people with female reproductive organs. Optimal management includes timely and appropriate treatment, notifying and treating sexual partners, timely retesting for reinfection and detecting complications including pelvic inflammatory disease (PID). In Australia, mainstream primary care (general practice) is where most chlamydia infections are diagnosed, making it a key setting for optimising chlamydia management. High reinfection and low retesting rates suggest partner notification and retesting are not uniformly provided. The Management of Chlamydia Cases in Australia (MoCCA) study seeks to address gaps in chlamydia management in Australian general practice through implementing interventions shown to improve chlamydia management in specialist services. MoCCA will focus on improving retesting, partner management (including patient-delivered partner therapy) and PID diagnosis.Methods and analysisMoCCA is a non-randomised implementation and feasibility trial aiming to determine how best to implement interventions to support general practice in delivering best practice chlamydia management. Our method is guided by the Consolidated Framework for Implementation Research and the Normalisation Process Theory. MoCCA interventions include a website, flow charts, fact sheets, mailed specimen kits and autofills to streamline chlamydia consultation documentation. We aim to recruit 20 general practices across three Australian states (Victoria, New South Wales, Queensland) through which we will implement the interventions over 12–18 months. Mixed methods involving qualitative and quantitative data collection and analyses (observation, interviews, surveys) from staff and patients will be undertaken to explore our intervention implementation, acceptability and uptake. Deidentified general practice and laboratory data will be used to measure pre-post chlamydia testing, retesting, reinfection and PID rates, and to estimate MoCCA intervention costs. Our findings will guide scale-up plans for Australian general practice.Ethics and disseminationEthics approval was obtained from The University of Melbourne Human Research Ethics Committee (Ethics ID: 22665). Findings will be disseminated via conference presentations, peer-reviewed publications and study reports.

Background: Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals’ attitudes to palliative care with few studies exploring the views of patients and their carers. Aim: To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Design: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Results: Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a ‘lesser’ treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one’s care given all other options have expired. Conclusion: While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the ‘institutional death’ and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

Objective The aim of the present study was to audit the current use of medical records to determine completeness and concordance with other sources of medical information. Methods Medical records for 40 patients from each of five Melbourne major metropolitan hospitals were randomly selected (n=200). A quantitative audit was performed for detailed patient information and medical record keeping, as well as data collection, storage and utilisation. Using each hospital’s current online clinical database, scanned files and paperwork available for each patient audited, the reviewers sourced as much relevant information as possible within a 30-min time allocation from both the record and the discharge summary. Results Of all medical records audited, 82% contained medical and surgical history, allergy information and patient demographics. All audited discharge summaries lacked at least one of the following: demographics, medication allergies, medical and surgical history, medications and adverse drug event information. Only 49% of records audited showed evidence the discharge summary was sent outside the institution. Conclusions The quality of medical data captured and information management is variable across hospitals. It is recommended that medical history documentation guidelines and standardised discharge summaries be implemented in Australian healthcare services. What is known about this topic? Australia has a complex health system, the government has approved funding to develop a universal online electronic medical record system and is currently trialling this in an opt-out style in the Napean Blue Mountains (NSW) and in Northern Queensland. The system was originally named the personally controlled electronic health record but has since been changed to MyHealth Record (2016). In Victoria, there exists a wide range of electronic health records used to varying degrees, with some hospitals still relying on paper-based records and many using scanned medical records. This causes inefficiencies in the recall of patient information and can potentially lead to incidences of adverse drug events. What does this paper add? This paper supports the concept of a shared medical record system using 200 audited patient records across five Victorian metropolitan hospitals, comparing the current information systems in place for healthcare practitioners to retrieve data. This research identifies the degree of concordance between these sources of information and in doing so, areas for improvement. What are the implications for practitioners? Implications of this research are the improvements in the quality, storage and accessibility of medical data in Australian healthcare systems. This is a relevant issue in the current Australian environment where no guidelines exist across the board in medical history documentation or in the distribution of discharge summaries to other healthcare providers (general practitioners, etc).

The aims of the present study were to understand enablers to participation in postgraduate education for primary care nurses (PCNs), and to explore how postgraduate education has advanced their nursing practice. Cross-sectional questionnaires were mailed out in April 2012 to current and past students undertaking postgraduate studies in primary care nursing at The University of Melbourne, Victoria, Australia. Questionnaires were returned by 100 out of 243 nurses (response rate 41%). Ninety-one per cent (91/100) of the respondents were first registered as nurses in Australia. Fifty-seven per cent were hospital trained and 43% were university educated to attain their initial nurse qualification. The respondents reported opportunities to expand scope of practice (99%; 97/98), improve clinical practice (98%; 97/99), increase work satisfaction (93%; 91/98) and increase practice autonomy (92%; 89/97) as factors that most influenced participation in postgraduate education in primary care nursing. Major enablers for postgraduate studies were scholarship access (75%; 71/95) and access to distance education (74%; 72/98). Many respondents reported an increased scope of practice (98%; 95/97) and increased job satisfaction (71%; 70/98) as an education outcome. Only 29% (28/97) cited an increase in pay-rate as an outcome. Of the 73 PCNs currently working in general practice, many anticipated an increase in time spent on the preparation of chronic disease management plans (63%; 45/72), multidisciplinary care plans (56%; 40/72) and adult health checks (56%; 40/72) in the preceding 12 months. Recommendations emerging from findings include: (1) increased access to scholarships for nurses undertaking postgraduate education in primary care nursing is imperative; (2) alternative modes of course delivery need to be embedded in primary care nursing education; (3) the development of Australian primary care policy, including policy on funding models, needs to more accurately reflect the educational level of PCNs, PCN role expansion and the extent of interprofessional collaboration that is evident from research undertaken to date. Nurses with postgraduate education have the potential to increase their scope of practice, take on a greater teaching role and provide more preventive and chronic disease services in primary care. Policies aimed at increasing access to education for nurses working in primary care would strengthen the primary care nursing profession, and enhance the delivery of primary health care services in Australia.

Abstract Introduction: High dose therapy with Autologous Stem Cell Transplantation (ASCT) has traditionally been performed as an inpatient procedure. However, with improvements in care and patient selection it is possible to safely deliver conditioning chemotherapy and supportive care in an Daytherapy setting (Kodad SG et al., 2019). While deemed an "outpatient procedure" this method is often delivered on large day units which requires the patient to attend daily, often only spending overnight at home. To reduce these daily visits the Clinical Haematology Department of Peter MacCallum and Royal Melbourne Hospital (CHD) in collaboration with the Hospital in the Home department (HIHD) at Royal Melbourne Hospital developed an innovative program to safely deliver supportive care for Myeloma Patients undergoing ASCT at home (HIH-ASCT). The HIHD is an acute inpatient unit that exists as a "virtual" inpatient ward. Patients are reviewed daily by a HIHD Doctor with twice daily visits by a HIHD Nurse for administration of supportive care measures (e.g. intravenous electrolyte and fluid replacement) in the comfort of their home. Here we report on the safety outcomes of our HIH-ASCT program, specifically patient complications and outcomes. Methods: A retrospective case note audit identified 54 consecutive HIH-ASCT patients who received HIH-ASCT for Myeloma between 2018 and 2021 under HIHD. Patients were eligible for our HIH-ASCT program if they had Myeloma requiring ASCT; an ECOG ≤1; had not been admitted to ICU previously; lived within 30 minutes drive of the hospital; had a safe home environment (for both the patient and visiting staff) and a carer who could stay with them throughout their HIH-ASCT. While undertaking HIH-ASCT patients did not receive prophylactic antibiotics and they were not routinely given GCSF to minimise the risk of engraftment fevers. Results: Of those treated as HIH-ASCT patients the median age was 60 years (range 33-72). 39% patients were female (n=21) and 61% male (n=33). Underlying disease groups included IgA (n=8; 15%), IgG (n=35; 64%), IgM (n=1; 2%), Light Chain (n=9; 17%) and Oligosecretory (n=1; 2%). 43% had High-risk Cytogenetics. ASCT-1 (n=48; 88%), ASCT-2 (n=5; 9%) and one patient underwent a ASCT-Tandem (both under HIHD). Conditioning regimes included Melphalan200 (n=37; 68%), Velcade-Melphan200 (n=13; 23%) and Carfilzomib-Melphalan200 (n=5; 9%). The average stem dose was 3.80 x10 6/kg (range 2.14-8.4). Median time to Neutrophil engraftment was 12 days (range = 10-21) and Platelet engraftment 12 days (range = 8-18). The total number of bed days saved through the HIH-ASCT program was 466, with a median length of stay (LOS) under the HIHD team of 9 days (Range = 3-14). In addition, 3 patients were not readmitted to the hospital (6%) and were discharged directly from the HIHD team. The most common reason for readmission was fever (n=43; 80%), of which only 11 were culture positive, and diarrhoea (n=44; 81%). Only 1 patient required intensive care support. There were no deaths. The median LOS as an inpatient once readmitted was 6 days (range = 2-27). In regards to cost savings, an acute inpatient bed under the CHD is approximately $1300 USD versus $900 USD per day for a HIHD bed. This equated to a potential cost saving for the CHD of approximately $186000 USD. Conclusion: The delivery of supportive care for patients undergoing HIH-ASCT in is both safe and effective with comparable outcomes for what would be expected for an inpatient cohort. It resulted in a median of 9 bed days saved per patient (total number of bed days saved = 466). This is important as it allowed our department to increase bed capacity across the unit without the associated costs of building a new ward. In addition, during our COVID-19 outbreaks the HIH-ASCT program has allowed us to continue to deliver optimal patient care, while minimising the infection risk for our patients. More recently we have introduced remote monitoring (e.g. temperature, heart rate, blood pressure and oxygen saturations) with video reviews with the aim of increasing the capacity of our HIHD and further improving the HIH-ASCT experience for our patients. Disclosures Routledge: Amgen: Honoraria, Speakers Bureau; Sandoz: Consultancy, Honoraria, Speakers Bureau; BMS: Honoraria. Harrison: Amgen: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Abbvie: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; GSK: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Eusa: Consultancy, Honoraria, Speakers Bureau; Takeda: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Celgene/ Juno/ BMS: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Terumo BCT: Consultancy, Honoraria; Janssen Cilag: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Sanofi: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Roche/Genentech: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau; Haemalogix: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding, Speakers Bureau. Ritchie: CRISPR Therapeutics: Research Funding; Amgen Inc: Honoraria, Research Funding; Novartis: Honoraria; CSL: Honoraria; BMS: Research Funding; Takeda: Research Funding.

The objectives of this study were to perform an economic evaluation of a targeted school-based dental checkup program in northern metropolitan Melbourne, Victoria. A 12-mo retrospective case-control cohort analysis using the decision tree method evaluated the incremental cost-utility and cost-effectiveness ratio (ICUR/ICER) for passive standard care dental services and an outreach pilot intervention completed in 2013. A societal perspective was adopted. A total of 273 children ( n = 273) aged between 3 and 12 y met the inclusion/exclusion criteria: 128 in the standard care group and 145 in the intervention group. The total society costs included health sector costs, patient/family costs, and productivity losses in 2014 Australian dollars. Outcome measures were evaluated using quality-adjusted tooth years (QATY) and the combined deciduous and permanent decayed, missing, and filled teeth prevented (DMFT-prevented). A generic outcome variable was created to determine the impact of the intervention to reach underserved populations based on government concession eligibility (cardholder status). Uncertainties were incorporated using 95% confidence intervals. The mean total society cost per child is $463 and $291 ( P = 0.002), QATY utility difference is 0.283 and 0.293 ( P = 0.937), effectiveness difference is 0.16 and 0.10 ( P = 0.756), and cardholder status is 50.0% and 66.2% ( P = 0.007), respectively, for the standard care and intervention groups. On average per child, there was a cost saving of $172 and improvement of 0.01 QATY, with an additional proportion of 16.2% of cardholder children reached. The calculated ICER was $3,252 per DMFT-prevented. The intervention dominates standard care for QATY and per 1% cardholder reached outcome measures. Our study found the pilot checkup program was largely less costly and more effective compared with the current standard care. Further research is needed to quantify the value of outreach interventions to prevent dental caries development and progression in populations from low socioeconomic status. Knowledge Transfer Statement: The findings of this research demonstrated that an outreach dental program can be less costly and more effective than standard models of dental care. It showed that a school-based dental checkup program is beneficial despite other opinions that dental screening is ineffective as a method to improve public dental health. There is fiscal economic evidence to support broader expansion of similar programs locally and internationally to reduce dental caries for children from low-income families.

Abstract Purpose: Esophageal Adenocarcinoma (EAC) is the second most lethal (<20% five-year survival) and fastest growing (>500% increase in incidence over 40 years) cancer in the U.S. All EAC is believed to arise from a metaplastic esophageal precancer, Barrett’s Esophagus (BE), in at-risk patients with gastroesophageal reflux disease (GERD). Non-dysplastic BE can be monitored for progression to dysplastic BE, which can be ablated endoscopically, reliably halting progression to EAC. Since mortality is high even in early stage EAC (<50% five-year survival), clinical practice guidelines recommend BE screening in GERD patients with multiple risk factors. Since, endoscopic BE screening has failed (<10% compliance with guidelines), recently updated guidelines from both the American College of Gastroenterology and American Gastroenterological Association now support non-endoscopic biomarker screening as an acceptable alternative to endoscopy. EsoCheck®, a noninvasive swallowable balloon capsule catheter device, is the only FDA 510(k)-cleared esophageal cell collection device which permits anatomically targeted and protected sampling of distal esophageal mucosal cells. The sample is collected in a less than five-minute office procedure, without sedation or anesthesia, and sent to a central laboratory for molecular biomarker testing. We report our initial clinical experience using EsoCheck® for collection of esophageal cells in outpatient test centers. Experimental Design: 687 patients underwent EsoCheck® distal esophageal cell sampling by a trained nurse practitioner (average sampled length 5 cm). Patient tolerance was rated on a five-point scale for gag reflex (GR) severity: 1 = no GR; 2 = minimal GR; 3 = mild GR; 4 = severe GR; and 5 = worst GR therefore collection could not be completed. DNA was extracted using the QIAamp DNA Mini kit and quantitated using Qubit™ dsDNA Assay kit. Cytologic assessment using H&E staining was performed on 15 samples. Results: 98% of patients successfully completed the procedure. 88% tolerated it well (rating ≤ 3); 10% experienced severe gagging (rating 4); and only 2% were unable to complete the procedure (rating 5). Average procedure time was 3.5 min (range: 1 min to 15 min). Average DNA yield was 868 ng (range: 0 ng to 19 µg) and 92% yielded at least 100 ng. The samples undergoing cytologic assessment averaged 500,000 cells (range: 100,000 to 2.5 million). Conclusion: Rapid, noninvasive, office-based, anatomically-targeted, and protected sampling of distal esophageal mucosal cells using EsoCheck® can be successfully performed in nearly all patients and is broadly well-tolerated. Cellular and DNA yields were very good and are expected to improve with clinical experience and assay optimization. When combined with a highly sensitive molecular biomarker test, the EsoCheck® device has the potential to significantly improve BE screening compliance and prevent EAC deaths. Citation Format: Suman M. Verma, Ivy T. Le, Abhisek B. Ghosal, Marci L. Hageman, Victoria T. Lee, Brian J. deGuzman, Lishan Aklog. Rapid, noninvasive, office-based, esophageal cell collection for early detection of esophageal precancer and cancer. [abstract]. In: Proceedings of the AACR Special Conference: Precision Prevention, Early Detection, and Interception of Cancer; 2022 Nov 17-19; Austin, TX. Philadelphia (PA): AACR; Can Prev Res 2023;16(1 Suppl): Abstract nr P058.

BackgroundImmune checkpoint inhibitors (ICIs) have revolutionized cancer therapy but can result in toxicities, known as immune-related adverse events (irAEs), due to a hyperactivated immune system. ICI-related inflammatory arthritis has been described in literature, but herewith we introduce and characterize post-ICI activated osteoarthritis (ICI-aOA).MethodsWe conducted a multi-center, retrospective, observational study of patients with cancer treated with ICIs and diagnosed with ICI-aOA by a rheumatologist. ICI-aOA was defined by (1) an increase in non-inflammatory joint pain after ICI initiation, (2) in joints characteristically affected by osteoarthritis and (3) lack of inflammation on exam. Cases were graded using the CTCAE (Common Terminology Criteria for Adverse Events) V6.0 rubric for arthralgia. RECIST (Response evaluation criteria in solid tumors) V.1.1 (v.4.03) guidelines determined tumor response. Results were analyzed using Chi-squared tests of association and multivariate logistic regression.ResultsThirty-six patients had ICI-aOA with mean age at time of rheumatology presentation of 66 years (51–81yrs). Most patients had metastatic melanoma (10/36, 28%) and had received a PD1/PDL1 inhibitor monotherapy (31/36, 86%) with 5/36 (14%) combination therapy. Large joint involvement (hip/knee) was noted in 53% (19/36), small joints of hand 25% (9/36), and spine 14% (5/36). Two-thirds (24/36) suffered multiple joint involvement. Three of 36 (8%) had CTCAE grade 3, 14 (39%) grade 2 and 19 (53%) grade 1 manifestations. Symptom onset ranged from six days to 33.8 months with median of 5.2 months after ICI initiation; 5 patients suffered ICI-aOA after ICI cessation (0.6, 3.5, 4.4, 7.3 and 15.4 months after ICI cessation) (figure 1). Most common form of therapy was intra-articular corticosteroid injections only (15/36, 42%) followed by NSAIDs only (7/36, 20%) (figure 2). Twenty patients (56%) experienced other irAEs, with rheumatic and dermatologic being the most common. All three patients with high-grade ICI-aOA also had another irAE diagnosis at some point after ICI initiation.ConclusionsICI-aOA should be recognized as an adverse event of ICI immunotherapy. Early referral to a rheumatologist can facilitate the distinction between ICI induced inflammatory arthritis from post-ICI mechanical arthropathy, the latter of which can be managed with local therapy that will not compromise ICI efficacy.Ethics ApprovalCollection of patient data was approved by local Institutional Review Boards at respective institutions: Hospital for Special Surgery in New York (HSS IRB # 2017–1898), University of Chicago in Chicago, Illinois (IRB150837) and Austin Health in Melbourne, Victoria, Australia (HREC/18/Austin/102).Abstract 817 Figure 1Incidence of ICI-aOA (activated osteoarthritis after immune-checkpoint inhibitor) ranged from the first month after ICI initiation up until month 22 after ICI initiation, with most cases occurring in the first 6 months after start of ICI. Five of 36 patients experienced ICI-aOA after ICI cessation (0.6, 3.5, 4.4, 7.3 and 15.4 months after ICI cessation), corresponding to presentation after ICI initiation as follows: 2.0, 9.6, 19.1, 8.7 and 16.1 months after ICI initiation, respectively (as denoted in darker color). ICI: Immune-checkpoint inhibitor, NSAIDs: Non-steroidal anti-inflammatory drugs, DMARDs: Disease modifying anti-rheumatic drugsAbstract 817 Figure 2Therapeutic option most used was local or intra-articular corticosteroid therapy, followed by conservative management with physical therapy only then NSAIDs. Most patients experienced improvement in signs and symptoms with treatment. ICI: Immune-checkpoint inhibitor, NSAIDs: Non-steroidal anti-inflammatory drugs, DMARDs: Disease modifying anti-rheumatic drugs

Australians in rural and remote locations have worse health outcomes compared to that of their metropolitan counterparts and this is due in part to poor access to health services. Public specialist dental services in Victoria, Australia are predominantly offered in the capital city Melbourne. For rural patients this can mean considerable travel, out of pocket costs and delays due to long wait-times. In 2015 Dental Health Service Victoria (DHSV) embarked on a pilot project to enable access to rural clients by linking community dental clinics with the Royal Dental Hospital Melbourne using a Telehealth platform. Aim: The objectives of the pilot were to develop specialist care pathways and enable patient access, support community clinicians to work to full scope through a peer education approach and to identify the appropriate equipment and telehealth platform to support this model of care. Method: DHSV launched its pilot project June 2015 collaborating with four Community Dental sites. The specialties trialled during the pilot project were Oral Medicine, Oral Surgery, Endodontics and Orthodontics. An action based research framework was adopted so that improvements to the operational framework and clinical pathways could be made throughout the life of the pilot. Results: By the end of the pilot programme, DHSV was satisfied the program objectives had been met and the modality was accepted by specialists, community dentists, and patients as a satisfactory substitution for a traditional face-to-face referral and consult mode. Conclusion: Based on this outcome, the programme was endorsed and implemented across the state of Victoria in January 2018.

Abstract Background The Melbourne Genomics Health Alliance (the Alliance) is a collaboration of leading hospitals, research and academic organisations, supported by its member organisations and the Victorian Government. The Alliance was set up by its members in 2013 to steer the translation of genomics, making it an integral part of health care in Victoria, Australia. The Community Advisory Group (CAG) was formed soon after, to give input and advice across the program. This was to ensure consideration of community values, perspectives and priorities, and knowledge translation for patient care. The CAG was charged with providing a strong community voice for the duration of the program. Appointed members were experienced consumer advocates with developed connections to the community. Main body The Alliance progressed from an initial Demonstration Project (2013–2015) to a multifaceted program (2016–2020). The CAG worked strategically to help address complex issues, for example, communication, privacy, informed consent, ethics, patient experience, measurement and evaluation standards and policies, data storage and re-use of genomic data. Many aspects of translating genomics into routine care have been tackled, such as communicating with patients invited to have genomic testing, or their caregivers, and obtaining informed consent, clinical questions across 16 areas of health care, training and education of health and laboratory professionals, genomic data management and data-sharing. Evidence generated around clinical utility and cost-effectiveness led to government funding of testing for complex genetic conditions in children. Conclusion The CAG activities, recorded in a CAG-inspired Activity register, span the full spectrum of information sharing and consultation to co-design and partnership. The CAG were involved at multiple levels of participation and in all tiers of activity including governance, development of policies and procedures, program planning and evaluation. Working relationships were built up and a level of trust instilled to advance the Alliance work program in ensuring an effective patient-care model of delivery of genomics. CAG input into project deliverables has been tangible. Less tangible contributions included presentations at external meetings and conferences, direct interactions at meetings with Alliance members, interactions with visitors and external experts, taking part in consultations with experts, state and federal government.

Abstract Background The emergency department has been a major focus for the implementation of Australia’s national electronic health record, known as My Health Record. However, the association between use of My Health Record in the emergency department setting and patient care is largely unknown. The aim of this study was to explore the perspectives of emergency department clinicians regarding My Health Record use frequency, the benefits of My Health Record use (with a focus on patient care) and the barriers to use. Methods All 393 nursing, pharmacy, physician and allied health staff employed within the emergency department at a tertiary metropolitan public hospital in Melbourne were invited to participate in a web-based survey, between 1 May 2021 and 1 December 2021, during the height of the Delta and Omicron Covid-19 outbreaks in Victoria, Australia. Results Overall, the survey response rate was 18% (70/393). Approximately half of the sample indicated My Health Record use in the emergency department (n = 39, 56%, confidence interval [CI] 43–68%). The results showed that users typically only engaged with My Health Record less than once per shift (n = 15, 39%, CI 23–55%). Just over half (n = 19/39, 54%, CI 32–65%) of all participants who use My Health Record agreed they could remember a time when My Health Record had been critical to the care of a patient. Overall, clinicians indicated the biggest barrier preventing their use of My Health Record is that they forget to utilise the system. Conclusion The results suggest that My Health Record has not been adopted as routine practice in the emergency department, by the majority of participants. Close to half of self-identified users of My Health Record do not associate use as being critical to patient care. Instead, My Health Record may only be used in scenarios that clinicians perceive will yield the greatest benefit—which clinicians in this paper suggest is patients with chronic and complex conditions. Further research that explores the predictors to use and consumers most likely to benefit from use is recommended—and strategies to socialise this knowledge and educate clinicians is desperately required.

Abstract Background South Asian women are at a high risk of developing gestational diabetes mellitus than other women in Australia. Gestational diabetes affects up to 14–19% of all pregnancies among South Asian, South East Asian, and Arabic populations placing women at risk of adverse pregnancy outcomes. Although, gestational diabetes resolves after childbirth, women with gestational diabetes are up to seven times more likely to develop type 2 diabetes within five to ten years of the index pregnancy. Increasingly, South Asian women are being diagnosed with gestational diabetes in Australia. Therefore, we aimed to gain a better understanding of the lived experiences of South Asian women and their experiences of self-management and their health care providers’ perspectives of treatment strategies. Methods Using an ethnographic qualitative research methodology, semi-structured one-on-one, face-to-face interviews were conducted with 21 health care providers involved in gestational diabetes management and treatment from the three largest tertiary level maternity hospitals in Melbourne, Victoria, Australia. In-depth interviews were conducted with 23 South Asian women post diagnosis between 24–28 weeks gestation in pregnancy. Results Health care providers had challenges in providing care to South Asian women. The main challenge was to get women to self-manage their blood glucose levels with lifestyle modification. Whilst, women felt self-management information provided were inadequate and inappropriate to their needs. Women felt ‘losing control over their pregnancy’, because of being preoccupied with diet and exercise to control their blood glucose level. Conclusions The gestational diabetes clinical practice at the study hospitals were unable to meet consumer expectations. Health care providers need to be familiar of diverse patient cultures, rather than applying the current ‘one size fits all’ approach that failed to engage and meet the needs of immigrant and ethnic women. Future enabling strategies should aim to co-design and develop low Glycaemic Index diet plans of staple South Asian foods and lifestyle modification messages.

BackgroundAn adverse interaction whereby opioids impair and delay the gastrointestinal absorption of oral P2Y12 inhibitors has been established, however the clinical significance of this in acute coronary syndrome (ACS) is uncertain. We sought to characterise the relationship between prehospital opioid dose and clinical outcomes in patients with ACS.MethodsPatients given opioid treatment by emergency medical services (EMS) with ACS who underwent percutaneous coronary intervention (PCI) between 1 January 2014 and 31 December 2018 were included in this retrospective cohort analysis using data linkage between the Ambulance Victoria, Victorian Cardiac Outcomes Registry and Melbourne Interventional Group databases. Patients with cardiogenic shock, out-of-hospital cardiac arrest and fibrinolysis were excluded. The primary end point was the risk-adjusted odds of 30-day major adverse cardiac events (MACE) between patients who received opioids and those that did not.Results10 531 patients were included in the primary analysis. There was no significant difference in 30-day MACE between patients receiving opioids and those who did not after adjusting for key patient and clinical factors. Among patients with ST-elevation myocardial infarction (STEMI), there were significantly more patients with thrombolysis in myocardial infarction (TIMI) 0 or 1 flow pre-PCI in a subset of patients with high opioid dose versus no opioids (56% vs 25%, p<0.001). This remained significant after adjusting for known confounders with a higher predicted probability of TIMI 0/1 flow in the high versus no opioid groups (33% vs 11%, p<0.001).ConclusionsOpioid use was not associated with 30-day MACE. There were higher rates of TIMI 0/1 flow pre-PCI in patients with STEMI prescribed opioids. Future prospective research is required to verify these findings and investigate alternative analgesia for ischaemic chest pain.

IntroductionOver 9,500 people die annually in Australia from sudden cardiac arrest, with strong evidence suggesting early high quality CPR and early counter shock being paramount for improving survival from cardiac arrest. It has also been shown that first responder programs have been able to reduce response times and increase survival rates for out-of-hospital cardiac arrest. The objective of this study was to examine data from the first seven years of an Australian out-of-hospital cardiac arrest first responder program where fire fighters provided basic life support.MethodsThis study was a retrospective cohort study of all cardiac arrests attended by the Metropolitan Fire and Emergency Services Board (MFESB) as part of the Emergency Medical Response program over a seven-year period in Melbourne, Victoria, Australia.ResultsThe MFESB attended 4,450 cardiac arrests. The majority of patients presented in asystole 669 (63.7%) with just 243 (23.1%) presenting in a shockable rhythm. The majority of patients in cardiac arrest were males (64.2%) and the mean age of the patients was 67.5 years. The MFESB median response time during the study period was 5.7 minutes (IQR 2.25 minutes), range of 0.15 minutes to 31.7 minutes, which remained stable over the seven years. Patients spent a median time of 4.6 minutes (0.02 seconds to 36.5 minutes) in the care of fire fighters prior to the arrival of EMS. The rhythm on handover to paramedics was asystole in 787 (75.1%) cases with no shockable rhythms. One in three (31.3%) patients received bystander CPR, with a significant rise in the rate of bystander CPR occurring over the last two years.ConclusionThis study demonstrated acceptable response times to cardiac arrests and a low bystander CPR rate prior to arrival of the MFESB. The incidence of a shockable rhythm on arrival of the MFESB was low with the main rhythm being asystole. The main rhythm on handover to paramedics was asystole with non-shockable rhythms. Further research is required to determine the effect on patient outcomes.

IntroductionFew life experiences have a greater impact upon the sense of self than the diagnosis of a life-challenging illness. Breast cancer is such an illness, and the sudden transition from 'well' to 'ill' is unsettling for a person's sense of knowing who they are in 'their' own body. What you know about your body, what others know about your body and what your biology knows about your body become suddenly problematic. This paper addresses what people know about their bodies before and after experiencing a breast cancer diagnosis by examining relevant theory and empirical data drawn from an online community for people with breast cancer, their families and supporters. In the Breast Cancer Click (BCC) online community members are encouraged to blog their breast cancer journey, engage in discussion forums, use a private messaging function to talk in real-time with each other and a breast care nurse, and to participate in live group chat. The records of all these activities have been used in a netnographic study which aims to examine the efficacy of this mutual support community. In this paper we present some of the material which has been created in the community’s activities to consider the embodied experience of breast cancer. Evidence from online community members is addressed to consider what a western cultural experience of breast cancer as captured by a disembodied online community can tell us about embodiment and embodied knowledge. How Do We Know?In ‘Knowing and Being’, Polanyi argues that knowing is related to two separate methods of investigation which nonetheless need to be integrated. On the one hand is the detailed knowledge of the particulars, and on the other the grasping of the big-picture conceptualization of the whole. “A medical student,” he writes, “deepens his knowledge of a disease by learning a list of its symptoms with all their variations, but only clinical practice can teach him to integrate the clues observed on an individual patient to form a correct diagnosis of his illness, rather than an erroneous diagnosis which is often more plausible” (460). The implication here is that there is more at stake than a formulaic listing of symptoms. The ‘knowing’ relates to knowledge around the disease of breast cancer; the ‘being’ relates to the experience of being a breast cancer patient. The necessary theory underpinning the identification of disease, the progress of symptoms and the side effects of treatment fails to capture the experience of the breast cancer patient, which is mutually recognisable among other patients even where superficial aspects of the disease manifestation diagnosis and progress may differ. Lekkie Hopkins writes of her immediate and bodily experience of hearing the diagnosis of her breast cancer:Thwack! ‘The good news is that you won’t die of this. The bad news is that you will have to lose a breast’. Whoosh earthwards. Floor opens to swallow my life force. Body a shell. Head empty, uncomprehending. Within seconds, whoosh again, upwards this time. Blood rushes to head, face blooms red, eyes zoom onto the tiny points of calcification on the x-ray image, ears boom. Lose a breast, lose a breast, lose a breast ricochets off the walls. Kind eyes, gentle hands, steady voice: ‘Can I call someone? Your partner?’ Kind eyes, gentle hands, steady voice. Lose a breast, Lose a breast, Lose a breast (132).Such embodied knowledge may not be recognisable within a medical/scientific context. Conflict can arise between a woman’s embodied knowledge of her breast cancer and the medical/scientific understanding involved in her treatment (Thomas-McLean, Memories of Treatment). Perhaps surprisingly, the body can appear absent in medical discourse and alternative approaches are needed to provide an embodied perspective. Considering poet and feminist scholar Adrienne Rich’s invitation to women to learn to think through the body, Lekkie Hopkins wondered “what it must mean to lose part of that body” (134). Thomas-McLean has noted that frameworks of health and illness can fail to capture the “complexities associated with living with an altered body” (Beyond Dichotomies 202). She promotes the idea that “women speaking for themselves, about their own experiences” is an important part of the repository of knowledge and understanding about breast cancer (Memories of Treatment 629). Our knowledge comes from our physical nature, our embodiment within our world and the meanings attached to the body within our social context.An online community constructed using community networking technologies may seem an unlikely place for reclaiming the knowledge of the body. However, deep connection between members has been observed in online communities studied in detail (Bonniface et al.). The qualitative richness of complex experiences, missing from the medical discourse, can be found in such communities and constitute an alternative source of data to traditional interview methods. As mentioned, it is not an aim of this paper to address the efficacy of the Breast Cancer Click community, but to use some of the material which has been created in the community’s activities to consider the embodied experience of breast cancer. In speaking for themselves in the Breast Cancer Click community, women reveal both their knowing and being as breast cancer survivors.Online Support in a (Dis)embodied CommunityThe research question addressed in this paper is “What embodied knowledge about breast cancer can be shared in the disembodied realm of an online support community?” Women experiencing the betrayal of their bodies seek the authenticating experience of sharing their stories with others whose lives have embodied analogous experiences. Breast Cancer Click (BCC) was set up to provide a connection between breast cancer patients and their supporters with others who are currently undergoing treatment and those that have completed their treatments wishing to support others. This peer-to-peer support is expanded through interaction with an online Breast Care Nurse, providing education and information and unraveling the medical terminology and diagnosis with each specific patient, where requested. Through personal messages, forum threads and group online chats regular contact is maintained with newly diagnosed members, those currently involved with treatment, and those considering reconstruction and other post-surgical options. It is through these active members’ dialogue that we can appreciate the value provided by this disembodied communicative space. Using the principles of netnography (Kozinets), which applies ethnographic techniques to online communities and environments, the posts, chat, forum contributions and private messages (all de-identified) were archived to provide the raw data for this study. Transcripts were analysed to identify themes arising (Strauss & Corbin) and to select content which illustrates these themes and illuminates the experience of participants and the value or otherwise of the online community. Necessarily, with hundreds of thousands of words posted as part of the ongoing research project, only selected material is presented here. Three major areas of discussion are presented for this paper: development of a new normal, breast image and holistic health. We have not ‘personalised’ the contributions of Breast Cancer Click members, but have indicated verbatim quotes via the attribution to (BCC).The ‘New Normal’I have silicone implants and swimming now feels VERY wierd. (BCC) This statement is indicative of a range of language comparing the pre-diagnosis, or pre-cancer, body with the changed circumstances which embody the results of the cancer even while the medical model excises it. Insights and comments on the bodily experience arise in a range of circumstances such as: through the experience of hair loss following on from chemotherapy; questions about authenticity and reconstruction following surgery. im expecting to shave my head as soon as i see hairloss. i have already had my hair cut shorter to help my kids adjust etc.i cut my hair short too before chemo so i get used to the idea havent shaved it yet though. (all BCC) These comments indicate the intuitive use of simulation strategies as a means of adjusting to the anticipated response of the body to the experience of chemotherapy. This simulation strategy reintroduces a sense of agency for the BCC member, allowing them to feel as though they have chosen to change their appearance.Sometimes the edge of the new normal can be softened by the experience of social and emotional solidarity conveyed through others embodying their support for the person with a breast cancer diagnosis: oh when i lost my hair, my boss (at the time) was so lovely, and he shaved his head, and we had our pics taken together : ). Mine too- the school did greatest shave just as I lost my hair. Raised $900. (Both BCC) Although the experience of losing hair through chemotherapy is very different from that of being shaved, the embodiment of ‘different’ can serve to offer consolation and companionship for those who are embarking on a breast cancer journey. A return to the ‘old normal’ can be a cause for celebration, along with a recognition that the body continues to function as it had pre-cancer:i remember the feeling when my hair was long enuf to dye back to blonde : ) was fabulous when it got long enuf for a bit of a style instead of just fluff! (BCC) Breast Image, Mastectomy and ReconstructionWithin the breast cancer community, the issue of reconstruction following mastectomy becomes a very personal one, whilst also, for some people, involving wider gender politics. Although it might seem this is an elaboration of the discussion around challenges to the concept of the ‘pre-cancer self’ and the new normal, women’s breasts have such a range of associations in Western culture that it is hard to be objective about the new embodiment of the post-cancer self. I had a lumpectomy but it's obvious size wise and I lost my nipple completely ... but I won't reconstruct or wear padding.We all look great (scars are not so lovely) but with swimwear or a bra on we are all OK. I went from a small a cup to a c cup as the plastic surgeon suggested we ‘may as well kick a goal as a point’. (Both BCC)Sometimes the experience of the disease is such that the ‘new normal’ places the body into an anomalous category. There is an embodiment of strangeness which over-rides the conscious understanding about biology and function. The rational, knowledgeable, self can sometimes be seen to be in conflict with the experiential being of the post-treatment breast cancer patient. This was the case with a 29 year-old BCC member who successfully fell pregnant after her diagnosis. This exchange was via live chat between the breast care nurse (BCN) and the BCC member, so it sometimes reads in a disjointed way as the messagers respond to each other’s posts in a semi-synchronous way. Do you think you will breast-feed? (BCC Breast Care Nurse) probably not. (BCC)i feel weird about my boobs now. (BCC) How do you mean? (BCC Breast Care Nurse) like i'd make sure baby got first milk etc, and then bottle feed. (BCC)oh umm its hard to describe, they don't feel like they are for that purpose anymore. (BCC)i don't like the left one being touched much. (BCC)Good plan - good for baby to have some breast milk. (BCC Breast Care Nurse)No - I guess it feels odd - not normal? (BCC Breast Care Nurse)As in this exchange, the online community operates to validate the experiences of its members, to offer support and understanding. The politics around breast feeding, as with those around a woman’s physical appearance, mean that people with a diagnosis of breast cancer often perceive they are subject to a range of social ‘shoulds’ at a time when they are trying to re-learn (or to learn) an authentic sense of being in communication with, and being in communion with, their body. Holistic HealthWe went for a brisk walk around west-end with heart rate monitors on to check our pulse rates. It was great to do the exercise in a group situation. I am looking forward to getting in touch with my pre-diagnosis body again. I gently stretched my 'bad' arm which was OK.I am very happy to say that my energy levels have already improved and have just been for a walk. My unused muscles are waking up and I feel excited now I realize it is possible for me to return to my pre-diagnosis fitness levels and activities. (Both BCC) The physicality of the experience of cancer and its treatment can act as a spur to people who wish to reassert control over their bodies and bring their body back into a positive relationship with health and fitness. Sometimes this impetus can provoke an almost super-human response on the part of the person with breast cancer:I had been attending Body Pump 2 or 3 times a week for 10 years prior to my diagnosis and made casual aquaintences with other regular attendees. […] I returned to the classes myself while still on chemo, I was having a weekly light dose for 3 months so felt OK. While my energy levels were a bit low I managed to do about 75% of the class with light weights and just stopped when I became tired. The instructor and other class members were so supportive. It helped me to feel like I was getting back to normal just being able to participate in the classes. (BCC)On occasions, BCC members will post in a way that invites support from those who have developed successful strategies or responses to similar challenges. Here the mind is sometimes seen as determining the response of the body: [I’m] finding it hard to get motivated enough to go out. This is made worse because I have put on lots of weight and am so unfit compared to my pre-cancer body. So doing exercise just isn't as much fun anymore. Hopefully it will get better. (BCC)When a person with a breast cancer diagnosis seeks strategies to move beyond a place in which they feel stuck, it is often through harnessing a sensory image. The means of moving through a challenge, or towards an acceptable new normal, might be via the use of senses, simulation and experiential movement: I feel like I'd like to have someone gently hold my hand and lead me to do all the cardio, exercises and stretching. Having been through so much I feel like being nurtured but instead I have to be strict and a bit tough to take steps to go forward. […] Often I pop outside and if the sky is clear and it's not too cold I walk around the block. (BCC)Communication and the BodyWhat is clear from these communications between members is that an experience of breast cancer can trigger particular responses associated with physical embodiment. Even as the person with a new diagnosis of breast cancer tries to rationalise the diagnosis, the treatment and the prognosis, so they are assaulted by a range of highly physical sensations, from feeling sick, to feeling crushed, to feeling as if even the certainties of gravity have been challenged by this embodiment of change (Walker, Plant, Hopkins). For those working through their response, initial analysis of the data from the disembodied BCC community indicates that accommodating the post-cancer self often takes a physical form, an acceptance of the revised self and its engagement in sensory and simulated ways with the wider world. For example it is often aspects of the post-surgery body that BCC members use to highlight the possibility of a lighter, more humorous, response to the challenges of their experience:haha XX [friend who has had a breast cancer diagnosis] and [I] still go to lift the boob when washing in the shower haha.a friend of mine had [a] double reconstruction a few years back and needed ‘replacement nipples’ that were imported from the US - we all laughed when she announced they have arrived in the post for her! (Both BCC)In terms of the research question, “What embodied knowledge about breast cancer can be shared in the disembodied realm of an online support community?”, the data presented indicates that experience of the life-changing disease of breast cancer can trigger a new appreciation of the physicality of the human condition. This can be shared with others in a similar situation, seeking confirmation of shared experience. The disembodied community allows the member-self to move from the cognitive realm into an experiential one. It foregrounds the strangeness of the revised body through temporary but highly visible indicators, such as the loss of hair following chemotherapy, and permanent but less visible changes, such as the removal of a breast. It allows these changes to be recontextuatlised as the new normal, and provides a safe space in which to explore and imagine further responses to these embodied challenges such as whether to use a prosthesis, or to embark upon a reconstruction. The physically disembodied community of the BCC may constitute a lived space where the daily experience of breast cancer is addressed; “simultaneously part of bodily forms and their social constructions” (Moss and Dyck 49).This initial analysis of BCC community posts indicates that one way through the maelstrom of diagnosis, treatment and living with an altered body is a renewed focus upon experiential data and the sensory life. Simulation is often used and described as a means of coming to terms with the new normal. Theoretical discussions around embodied knowledge, may yet prove to have practical outcomes by contributing to a composite and shared understanding of the disease and in supporting people whose lives have triggered a radical re-appraisal of what it is to be an embodied being.AcknowledgementsThe research project upon which this paper is based is funded jointly by Breast Cancer Care WA and the Australian Research Council with in-kind contributions from Edith Cowan University and utilizes a social network site linked to Breast Cancer Care WA and Steel Blue’s Purple Boot Brigade.References Bonniface, Leesa, Lelia Green, and Maurice Swanson. “Affect and an Effective Online Therapeutic Community.” M/C Journal 8.6 (2005). 14 Aug. 2012 ‹http://journal.media-culture.org.au/0512/05-bonnifacegreenswanson.php›.Hopkins, Lekkie. “Bad News: A Narrative Account of the Subjective Experience of Mastectomy.” Health Sociology Review 12 (2003): 129-136.Kozinets, Robert. Netnography: Doing Ethnographic Research Online. Thousand Oaks, CA: Sage, 2010.Moss, Pamela, and Isabel Dyck. Women, Body, Illness: Space and Identity in the Everyday Lives of Women with Chronic Illness. Lanham, MA: Rowman & Littlefield, 2002.Plant, Jane. Your Life in Your Hands: Understand, Prevent and Overcome Breast Cancer and Ovarian Cancer. 4th ed. London: Virgin Books, 2007.Polanyi, Michael. “Knowing and Being.” Mind (New Series), 70.280 (1961): 458-470.Strauss, Anselm, and Juliet Corbin. Basics of Qualitative Research: Techniques for Developing Grounded Theory. Thousand Oaks, CA: Sage, 1998.Thomas-McLean, Roanne. "Memories of Treatment: the Immediacy of Breast Cancer." Qualitative Health Research 14 (2004): 628-643.---. Beyond Dichotomies of Health and Illness: Life after Breast Cancer. Nursing Inquiry 12 (2005): 200-209.Rich, Adrienne. Of Woman Born: Motherhood as Experience and Institution. London: Virago, 1992.Walker, Brenda. Reading by Moonlight: How Books Saved a Life. Melbourne: Penguin Australia, 2010.

In this article I discuss a story told by the South Australian Ngarrindjeri Aboriginal elder, Aunty Hilda Wilson (nee Varcoe), about the time when, at not quite sixteen, she was sent from the Point Pearce Aboriginal Station to work in the Adelaide Hills, some 500 kilometres away, as a housekeeper for “one of Adelaide’s leading doctors”. Her secondment was part of a widespread practice in early and mid-twentieth century Australia of placing young Aboriginal women “of marriageable age” from missions and government reserves into domestic service. Consciously deploying Indigenous storytelling practices as pedagogy, Hilda Wilson recounted this episode in a number of distinct ways during the late 1990s and early 2000s. Across these iterations, each building on the other, she exhibited a personal resilience in her subjectivity, embedded in Indigenous knowledge systems of relationality, kin and work, which informed her agency and determination in a challenging situation in which she was both caring for a white socially-privileged family of five, while simultaneously grappling with the injustices of a state system of segregated indentured labour. Kirmayer and colleagues propose that “notions of resilience emerging from developmental psychology and psychiatry in recent years address the distinctive cultures, geographic and social settings, and histories of adversity of indigenous peoples”. Resilience is understood here as an ability to actively engage with traumatic change, involving the capacity to absorb stress and to transform in order to cope with it (Luthar et al.). Further to this, in an Indigenous context, Marion Kickett has found the capacity for resilience to be supported by three key factors: family connections, culture and belonging as well as notions of identity and history. In exploring the layers of this autobiographical story, I employ this extended psychological notion of resilience in both a domestic ambit as well as the broader social context for Indigenous people surviving a system of external domination. Additionally I consider the resilience Aunty Hilda demonstrates at a pivotal interlude between girlhood and womanhood within the trajectory of her overall long and productive life, and within an intergenerational history of resistance and accommodation. What is especially important about her storytelling is its refusal to be contained by the imaginary of the settler nation and its generic Aboriginal-female subject. She refuses victimhood while at the same time illuminating the mechanisms of injustice, hinting also at possibilities for alternative and more equitable relationships of family and work across cultural divides. Considered through this prism, resilience is, I suggest, also a quality firmly connected to ideas of Aboriginal cultural-sovereignty and standpoint and to, what Victoria Grieves has identified as, the Aboriginal knowledge value of sharing (25, 28, 45). Storytelling as Pedagogy The story I discuss was verbally recounted in a manner that Westphalen describes as “a continuation of Dreaming Stories”, functioning to educate and connect people and country (13-14). As MacGill et al. note, “the critical and transformative aspects of decolonising pedagogies emerge from storytelling and involve the gift of narrative and the enactment of reciprocity that occurs between the listener and the storyteller.” Hilda told me that as a child she was taught not to ask questions when listening to the stories of an Elder, and her own children were raised in this manner. Hilda's oldest daughter described this as a process involving patience, intrigue and surprise (Elva Wanganeen). Narratives unfold through nuance and repetition in a complexity of layers that can generate multiple levels of meaning over time. Circularity and recursivity underlie this pedagogy through which mnemonic devices are built so that stories become re-membered and inscribed on the body of the listener. When a perceived level of knowledge-transference has occurred, a narrator may elect to elaborate further, adding another detail that will often transform the story’s social, cultural, moral or political context. Such carefully chosen additional detail, however, might re-contextualise all that has gone before. As well as being embodied, stories are also emplaced, and thus most appropriately told in the Country where events occurred. (Here I use the Aboriginal English term “Country” which encompasses home, clan estate, and the powerful complex of spiritual, animate and inanimate forces that bind people and place.) Hilda Wilson’s following account of her first job as a housekeeper for “one of Adelaide’s leading doctors”, Dr Frank Swann, provides an illustration of how she expertly uses traditional narrative forms of incrementally structured knowledge transmission within a cross-cultural setting to tell a story that expresses practices of resilience as resistance and transformation at its core. A “White Doctor” Story: The First Layer Aunty Hilda first told me this story when we were winding along the South Eastern Freeway through the Adelaide hills between Murray Bridge and Mount Barker, in 1997, on our way home to Adelaide from a trip to Camp Coorong, the Ngarrindjeri cultural education centre co-founded by her granddaughter. She was then 86 years old. Ahead of us, the profile of Mt Lofty rose out of the plains and into view. The highest peak in the Mount Lofty ranges, Yurrebilla, as it is known to Kaurna Aboriginal people, or Mt Lofty, has been an affluent enclave of white settlement for Adelaide’s moneyed elite since early colonial times. Being in place, or in view of place, provided the appropriate opportunity for her to tell me the story. It belongs to a group of stories that during our initial period of working together changed little over time until one day two years later she an added contextual detail which turned it inside out. Hilda described the doctor’s spacious hill-top residence, and her responsibilities of caring for Dr Swann’s invalid wife (“an hysteric who couldn't do anything for herself”), their twin teenage boys (who attended private college in the city) along with another son and younger daughter living at home (pers. com. Hilda Wilson). Recalling the exhilaration of looking down over the sparkling lights of Adelaide at night from this position of apparent “privilege” on the summit, she related this undeniably as a success story, justifiably taking great pride in her achievements as a teenager, capable of stepping into the place of the non-Indigenous doctor's wife in running the large and demanding household. Successfully undertaking a wide range of duties employed in the care of a family, including the disabled mother, she is an active participant crucial to the lives of all in the household, including to the work of the doctor and the twin boys in private education. Hilda recalled that Mrs Swann was unable to eat without her assistance. As the oldest daughter of a large family Hilda had previously assisted in caring for her younger siblings. Told in this way, her account collapses social distinctions, delineating a shared social and physical space, drawing its analytic frame from an Indigenous ethos of subjectivity, relationality, reciprocity and care. Moreover Hilda’s narrative of domestic service demonstrates an assertion of agency that resists colonial and patriarchal hegemony and inverts the master/mistress-servant relationship, one she firmly eschews in favour of the self-affirming role of the lady of the house. (It stands in contrast to the abuse found in other accounts for example Read, Tucker, Kartinyeri. Often the key difference was a continuity of family connections and ongoing family support.) Indeed the home transformed into a largely feminised and cross-culturalised space in which she had considerable agency and responsibility when the doctor was absent. Hilda told me this story several times in much the same way during our frequent encounters over the next two years. Each telling revealed further details that fleshed a perspective gained from what Patricia Hill Collins terms an “epistemic privilege” via her “outsider-within status” of working within a white household, lending an understanding of its social mechanisms (12-15). She also stressed the extent of her duty of care in upholding the family’s well-being, despite the work at times being too burdensome. The Second Version: Coming to Terms with Intersecting Oppressions Later, as our relationship developed and deepened, when I began to record her life-narrative as part of my doctoral work, she added an unexpected detail that altered its context completely: It was all right except I slept outside in a tin shed and it was very cold at night. Mount Lofty, by far the coldest part of Adelaide, frequently experiences winter maximum temperatures of two or three degrees and often light snowfalls. This skilful reframing draws on Indigenous storytelling pedagogy and is expressly used to invite reflexivity, opening questions that move the listener from the personal to the public realm in which domestic service and the hegemony of the home are pivotal in coming to terms with the overlapping historical oppressions of class, gender, race and nation. Suddenly we witness her subjectivity starkly shift from one self-defined and allied with an equal power relationship – or even of dependency reversal cast as “de-facto doctor's wife” – to one diminished by inequity and power imbalance in the outsider-defined role of “mistreated servant”. The latter was signalled by the dramatic addition of a single signifying detail as a decoding device to a deeper layer of meaning. In this parallel stratum of the story, Hilda purposefully brings into relief the politics in which “the private domain of women's housework intersected with the public domain of governmental social engineering policies” (Haskins 4). As Aileen Moreton-Robinson points out, what for White Australia was cheap labour and a civilising mission, for Indigenous women constituted stolen children and slavery. Protection and then assimilation were government policies under which Indigenous women grew up. (96) Hilda was sent away from her family to work in 1927 by the universally-feared Sister Pearl McKenzie, a nurse who too-zealously (Katinyeri, Ngarrindjeri Calling, 23) oversaw the Chief Protector’s policies of “training” Aboriginal children from the South Australian missions in white homes once they reached fourteen (Haebich, 316—20). Indeed many prominent Adelaide hills’ families benefited from Aboriginal labour under this arrangement. Hilda explained her struggle with the immense cultural dislocation that removal into domestic service entailed, a removal her grandfather William Rankine had travelled from Raukkan to Government House to protest against less than a decade earlier (The Register December 21, 1923). This additional layer of story also illuminates Hilda’s capacity for resilience and persistence in finding a way forward through the challenge of her circumstances (Luthar et al.), drawing on her family networks and sense of personhood (Kickett). Hilda related that her father visited her at Mount Lofty twice, though briefly, on his way to shearing jobs in the south-east of the state. “He said it was no good me living like this,” she stated. Through his active intervention, reinforcement was requested and another teenager from Point Pearce, Hilda’s future husband’s cousin, Annie Sansbury, soon arrived to share the workload. But, Hilda explained, the onerous expectations coupled with the cultural segregation of retiring to the tin shed quickly became too much for Annie, who stayed only three months, leaving Hilda coping again alone, until her father applied additional pressure for a more suitable placement to be found for his daughter. In her next position, working for the family of a racehorse trainer, Hilda contentedly shared the bedroom with the small boy for whom she cared, and not long after returned to Point Pearce where she married Robert Wilson and began a family of her own. Gendered Resilience across Cultural Divides Hilda explicitly speaks into these spaces to educate me, because all but a few white women involved have remained silent about their complicity with state sanctioned practices which exploited Indigenous labour and removed children from their families through the policies of protection and assimilation. For Indigenous women, speaking out was often fraught with the danger of a deeper removal from family and Country, even of disappearance. Victoria Haskins writes extensively of two cases in New South Wales where young Aboriginal women whose protests concerning their brutal treatment at the hands of white employers, resulted in their wrongful and prolonged committal to mental health and other institutions (147-52, 228-39). In the indentured service of Indigenous women it is possible to see oppression operating through Eurocentric ideologies of race, class and gender, in which Indigenous women were assumed to take on, through displacement, the more oppressed role of white women in pre-second world war non-Aboriginal Australian society. The troubling silent shadow-figure of the “doctor’s wife” indeed provides a haunting symbol of - and also a forceful rebellion against – the docile upper middle-class white femininity of the inter-war era. Susan Bordo has argued that that “the hysteric” is archetypal of a discourse of ‘pathology as embodied protest’ in which the body may […] be viewed as a surface on which conventional constructions of femininity are exposed starkly to view in extreme or hyperliteral form. (20) Mrs Swann’s vulnerability contrasts markedly with the strength Hilda expresses in coping with a large family, emanating from a history of equitable gender relations characteristic of Ngarrindjeri society (Bell). The intersection of race and gender, as Marcia Langton contends “continues to require deconstruction to allow us to decolonise our consciousness” (54). From Hilda’s brief description one grasps a relationship resonant with that between the protagonists in Tracy Moffat's Night Cries, (a response to the overt maternalism in the film Jedda) in which the white mother finds herself utterly reliant on her “adopted” Aboriginal daughter at the end of her life (46-7). Resilience and Survival The different versions of story Hilda deploys, provide a pedagogical basis to understanding the broader socio-political framework of her overall life narrative in which an ability to draw on the cultural continuity of the past to transform the future forms an underlying dynamic. This demonstrated capacity to meet the challenging conditions thrown up by the settler-colonial state has its foundations in the connectivity and cultural strength sustained generationally in her family. Resilience moves from being individually to socially determined, as in Kickett’s model. During the onslaught of dispossession, following South Australia’s 1836 colonial invasion, Ngarrindjeri were left near-starving and decimated from introduced diseases. Pullume (c1808-1888), the rupuli (elected leader of the Ngarrindjeri Tendi, or parliament), Hilda’s third generation great-grandfather, decisively steered his people through the traumatic changes, eventually negotiating a middle-path after the Point McLeay Mission was established on Ngarrindjeri country in 1859 (Jenkin, 59). Pullume’s granddaughter, the accomplished, independent-thinking Ellen Sumner (1842—1925), played an influential educative role during Hilda’s youth. Like other Ngarrindjeri women in her lineage, Ellen Sumner was skilled in putari practice (female doctor) and midwifery culture that extended to a duty of care concerning women and children (teaching her “what to do and what not to do”), which I suggest is something Hilda herself drew from when working with the Swann family. Hilda’s mother and aunties continued aspects of the putari tradition, attending births and giving instruction to women in the community (Bell, 171, Hughes Grandmother, 52-4). As mentioned earlier, when the South Australian government moved to introduce The Training of Children Act (SA) Hilda’s maternal grandfather William Rankine campaigned vigorously against this, taking a petition to the SA Governor in December 1923 (Haebich, 315-19). As with Aunty Hilda, William Rankine used storytelling as a method to draw public attention to the inequities of his times in an interview with The Register which drew on his life-narrative (Hughes, My Grandmother, 61). Hilda’s father Wilfred Varcoe, a Barngarrla-Wirrungu man, almost a thousand kilometres away from his Poonindie birthplace, resisted assimilation by actively pursuing traditional knowledge networks using his mobility as a highly sought after shearer to link up with related Elders in the shearing camps, (and as we saw to inspect the conditions his daughter was working under at Mt Lofty). The period Hilda spent as a servant to white families to be trained in white ways was in fact only a brief interlude in a long life in which family connections, culture and belonging (Kickett) served as the backbone of her resilience and resistance. On returning to the Point Pearce Mission, Hilda successfully raised a large family and activated a range of community initiatives that fostered well-being. In the 1960s she moved to Adelaide, initially as the sole provider of her family (her husband later followed), to give her younger children better educational opportunities. Working with Aunty Gladys Elphick OBE through the Council of Aboriginal Women, she played a foundational role in assisting other Aboriginal women establish their families in the city (Mattingly et al., 154, Fisher). In Adelaide, Aunty Hilda became an influential, much loved Elder, living in good health to the age of ninety-six years. The ability to survive changing circumstances, to extend care over and over to her children and Elders along with qualities of leadership, determination, agency and resilience have passed down through her family, several of whom have become successful in public life. These include her great-grandson and former AFL football player, Michael O’Loughlin, her great-nephew Adam Goodes and her-grand-daughter, the cultural weaver Aunty Ellen Trevorrow. Arguably, resilience contributes to physical as well as cultural longevity, through caring for the self and others. Conclusion This story demonstrates how sociocultural dimensions of resilience are contextualised in practices of everyday lives. We see this in the way that Aunty Hilda Wilson’s self-narrated story resolutely defies attempts to know, subjugate and categorise, operating instead in accord with distinctively Aboriginal expressions of gender and kinship relations that constitute an Aboriginal sovereignty. Her storytelling activates a revision of collective history in ways that valorise Indigenous identity (Kirmayer et al.). Her narrative of agency and personal achievement, one that has sustained her through life, interacts with the larger narrative of state-endorsed exploitation, diffusing its power and exposing it to wider moral scrutiny. Resilience in this context is inextricably entwined with practices of cultural survival and resistance developed in response to the introduction of government policies and the encroachment of settlers and their world. We see resilience too operating across Hilda Wilson’s family history, and throughout her long life. The agency and strategies displayed suggest alternative realities and imagine other, usually more equitable, possible worlds. References Bell, Diane. Ngarrindjeri Wurruwarrin: A World That Is, Was and Will Be. Melbourne: Spinifex, 1998. Bordo, Susan. “The Body and the Reproduction of Femininity.” Writing on the Body: Female Embodiment and Feminist Theory. Eds. Katie Conboy, Nadia Medina, and Sarah Stanbury. New York: Columbia UP, 1997. 90-110. Collins, Patricia Hill. Black Feminist Thought. New York: Routledge, 2000. Fisher, Elizabeth M. "Elphick, Gladys (1904–1988)." Australian Dictionary of Biography. National Centre of Biography, Australian National University, 29 Sep. 2013. ‹http://adb.anu.edu.au/biography/elphick-gladys-12460/text22411>. Grieves, Victoria. Aboriginal Spirituality: Aboriginal Philosophy, The Basis of Aboriginal Social and Emotional Wellbeing, Melbourne University: Cooperative Research Centre for Aboriginal Health, 2009. Haebich, Anna. Broken Circles: The Fragmenting of Indigenous Families. Fremantle: Fremantle Arts Press, 2000. Haskins, Victoria. My One Bright Spot. London: Palgrave, 2005. Hughes, Karen. "My Grandmother on the Other Side of the Lake." PhD thesis, Department of Australian Studies and Department of History, Flinders University. Adelaide, 2009. ———. “Microhistories and Things That Matter.” Australian Feminist Studies 27.73 (2012): 269-278. ———. “I’d Grown Up as a Child amongst Natives.” Outskirts: Feminisms along the Edge 28 (2013). 29 Sep. 2013 ‹http://www.outskirts.arts.uwa.edu.au/volumes/volume-28/karen-hughes>. Jenkin, Graham. Conquest of the Ngarrindjeri. Adelaide: Rigby, 1979. Kartinyeri, Doris. Kick the Tin. Melbourne: Spinifex, 2000. Kartinyeri, Doreen. My Ngarrindjeri Calling, Adelaide: Wakefield, 2007. Kickett, Marion. “Examination of How a Culturally Appropriate Definition of Resilience Affects the Physical and Mental Health of Aboriginal People.” PhD thesis, Curtin University, 2012. Kirmayer, L.J., S. Dandeneau, E. Marshall, M.K. Phillips, K. Jenssen Williamson. “Rethinking Resilience from Indigenous Perspectives.” Canadian Journal of Psychiatry 56.2 (2011): 84-91. Luthar, S., D. Cicchetti, and B. Becker. “The Construct of Resilience: A Critical Evaluation and Guidelines for Future Work.” Child Development 71.3 (2000): 543-62. MacGill, Bindi, Julie Mathews, Ellen Trevorrow, Alice Abdulla, and Deb Rankine. “Ecology, Ontology, and Pedagogy at Camp Coorong,” M/C Journal 15.3 (2012). Mattingly, Christobel, and Ken Hampton. Survival in Our Own Land, Adelaide: Wakefield, 1988. Moreton-Robinson, Aileen. Talkin’ Up to the White Woman. St Lucia: UQP, 2000. Night Cries, A Rural Tragedy. Dir. Tracy Moffatt. Chili Films, 1990. Read, Peter. A Rape of the Soul So Profound. Crows Nest: Allen & Unwin, 2002. Tucker, Margaret. If Everyone Cared. Sydney: Ure Smith, 1977. Wanganeen, Elva. Personal Communication, 2000. Westphalen, Linda. An Anthropological and Literary Study of Two Aboriginal Women's Life Histories: The Impacts of Enforced Child Removal and Policies of Assimilation. New York: Mellen Press, 2011.

In this paper we explore the rise of anti-gambling apps in the context of the massive expansion of gambling in new spheres of life (online and offline) and an acceleration in strategies of anticipatory and individualised management of harm caused by gambling. These apps, and the techniques and forms of labour they demand, are examples of and a mechanism through which a mode of governance premised on ‘self-care’ and ‘self-control’ is articulated and put into practice. To support this argument, we explore two government initiatives in the Australian context. Quit Pokies, a mobile app project between the Moreland City Council, North East Primary Care Partnership and the Victorian Local Governance Association, is an example of an emerging service paradigm of ‘self-care’ that uses online and mobile platforms with geo-location to deliver real time health and support interventions. A similar mobile app, Gambling Terminator, was launched by the NSW government in late 2012. Both apps work on the premise that interrupting a gaming session through a trigger, described by Quit Pokies’ creator as a “tap on the shoulder” provides gamblers the opportunity to take a reflexive stance and cut short their gambling practice in the course of play. We critically examine these apps as self-disciplining techniques of contemporary neo-liberalism directed towards anticipating and reducing the personal harm and social risk associated with gambling. We analyse the material and discursive elements, and new forms of user labour, through which this consumable media is framed and assembled. We argue that understanding the role of these apps, and mobile media more generally, in generating new techniques and technologies of the self, is important for identifying emerging modes of governance and their implications at a time when gambling is going through an immense period of cultural normalisation in online and offline environments. The Australian context is particularly germane for the way gambling permeates everyday spaces of sociality and leisure, and the potential of gambling interventions to interrupt and re-configure these spaces and institute a new kind of subject-state relation. Gambling in Australia Though a global phenomenon, the growth and expansion of gambling manifests distinctly in Australia because of its long cultural and historical attachment to games of chance. Australians are among the biggest betters and losers in the world (Ziolkowski), mainly on Electronic Gaming Machines (EGM) or pokies. As of 2013, according to The World Count of Gaming Machine (Ziolkowski), there were 198,150 EGMs in the country, of which 197,274 were slot machines, with the rest being electronic table games of roulette, blackjack and poker. There are 118 persons per machine in Australia. New South Wales is the jurisdiction with most EGMs (95,799), followed by Queensland (46,680) and Victoria (28,758) (Ziolkowski). Gambling is significant in Australian cultural history and average Australian households spend at least some money on different forms of gambling, from pokies to scratch cards, every year (Worthington et al.). In 1985, long-time gambling researcher Geoffrey Caldwell stated thatAustralians seem to take a pride in the belief that we are a nation of gamblers. Thus we do not appear to be ashamed of our gambling instincts, habits and practices. Gambling is regarded by most Australians as a normal, everyday practice in contrast to the view that gambling is a sinful activity which weakens the moral fibre of the individual and the community. (Caldwell 18) The omnipresence of gambling opportunities in most Australian states has been further facilitated by the availability of online and mobile gambling and gambling-like spaces. Social casino apps, for instance, are widely popular in Australia. The slots social casino app Slotomania was the most downloaded product in the iTunes store in 2012 (Metherell). In response to the high rate of different forms of gambling in Australia, a range of disparate interest groups have identified the expansion of gambling as a concerning trend. Health researchers have pointed out that online gamblers have a higher risk of experiencing problems with gambling (at 30%) compared to 15% in offline bettors (Hastings). The incidence of gambling problems is also disproportionately high in specific vulnerable demographics, including university students (Cervini), young adults prone to substance abuse problems (Hayatbakhsh et al.), migrants (Tanasornnarong et al.; Scull & Woolcock; Ohtsuka & Ohtsuka), pensioners (Hing & Breen), female players (Lee), Aboriginal communities (Young et al.; McMillen & Donnelly) and individuals experiencing homelessness (Holsworth et al.). While there is general recognition of the personal and public health impacts of gambling in Australia, there is a contradiction in the approach to gambling at a governance level. On one hand, its expansion is promoted and even encouraged by the federal and state governments, as gambling is an enormous source of revenue, as evidenced, for example, by the construction of the new Crown casino in Barangaroo in Sydney (Markham & Young). Campaigns trying to limit the use of poker machines, which are associated with concerns over problem gambling and addiction, are deemed by the gambling lobby as un-Australian. Paradoxically, efforts to restrict gambling or control gambling winnings have also been described as un-Australian, such as in the Australian Taxation Office’s campaign against MONA’s founder, David Walsh, whose immense art collection was acquired with the funds from a gambling scheme (Global Mail). On the other hand, people experiencing problems with gambling are often categorised as addicts and the ultimate blame (and responsibility) is attributed to the individual. In Australia, attitudes towards people who are arguably addicted to gambling are different than those towards individuals afflicted by alcohol or drug abuse (Jean). While “Australians tend to be sympathetic towards people with alcohol and other drug addictions who seek help,” unless it is seen as one of the more socially acceptable forms of occasional, controlled gambling (such as sports betting, gambling on the Melbourne Cup or celebrating ANZAC Day with Two-Up), gambling is framed as an individual “problem” and “moral failing” (Jean). The expansion of gambling is the backdrop to another development in health care and public health discourse, which have for some time now been devoted to the ideal of what Lupton has called the “digitally engaged patient” (Lupton). Technologies are central to the delivery of this model of health service provision that puts the patient at the centre of, and responsible for, their own health and medical care. Lupton has pointed out how this discourse, while appearing new, is in fact the latest version of the 1970s emphasis on the ‘patient as consumer’, an idea given an extra injection by the massive development and availability of digital and interactive web-based and mobile platforms, many of these directed towards the provision of health and health-related information and services. What this means for patients is that, rather than relying solely on professional medical expertise and care, the patient is encouraged to take on some of this medical/health work to conduct practices of ‘self-care’ (Lupton). The Discourse of ‘Self-Management’ and ‘Self-Care’ The model of ‘self-care’ and ‘self-management’ by ‘empowering’ digital technology has now become a dominant discourse within health and medicine, and is increasingly deployed across a range of related sectors such as welfare services. In recent research conducted on homelessness and mobile media, for example, government department staff involved in the reform of welfare services referred to ‘self-management’ as the new service paradigm that underpins their digital reform strategy. Echoing ideas and language similar to the “digitally engaged patient”, customers of Centrelink, Medicare and other ‘human services’ are being encouraged (through planned strategic initiatives aimed at shifting targeted customer groups online) to transact with government services digitally and manage their own personal profiles and health information. One departmental staff member described this in terms of an “opportunity cost”, the savings in time otherwise spent standing in long queues in service centres (Humphry). Rather than view these examples as isolated incidents taking place within or across sectors or disciplines, these are better understood as features of an emerging ‘discursive formation’ , a term Foucault used to describe the way in which particular institutions and/or the state establish a regime of truth, or an accepted social reality and which gives definition to a new historical episteme and subject: in this case that of the self-disciplined and “digitally engaged medical/health patient”. As Foucault explained, once this subject has become fully integrated into and across the social field, it is no longer easy to excavate, since it lies below the surface of articulation and is held together through everyday actions, habits and institutional routines and techniques that appear to be universal, necessary and/normal. The way in which this citizen subject becomes a universal model and norm, however, is not a straightforward or linear story and since we are in the midst of its rise, is not a story with a foretold conclusion. Nevertheless, across a range of different fields of governance: medicine; health and welfare, we can see signs of this emerging figure of the self-caring “digitally engaged patient” constituted from a range of different techniques and practices of self-governance. In Australia, this figure is at the centre of a concerted strategy of service digitisation involving a number of cross sector initiatives such as Australia’s National EHealth Strategy (2008), the National Digital Economy Strategy (2011) and the Australian Public Service Mobile Roadmap (2013). This figure of the self-caring “digitally engaged” patient, aligns well and is entirely compatible with neo-liberal formulations of the individual and the reduced role of the state as a provider of welfare and care. Berry refers to Foucault’s definition of neoliberalism as outlined in his lectures to the College de France as a “particular form of post-welfare state politics in which the state essentially outsources the responsibility of the ‘well-being' of the population” (65). In the case of gambling, the neoliberal defined state enables the wedding of two seemingly contradictory stances: promoting gambling as a major source of revenue and capitalisation on the one hand, and identifying and treating gambling addiction as an individual pursuit and potential risk on the other. Risk avoidance strategies are focused on particular groups of people who are targeted for self-treatment to avoid the harm of gambling addiction, which is similarly framed as individual rather than socially and systematically produced. What unites and makes possible this alignment of neoliberalism and the new “digitally engaged subject/patient” is first and foremost, the construction of a subject in a chronic state of ill health. This figure is positioned as terminal from the start. They are ‘sick’, a ‘patient’, an ‘addict’: in need of immediate and continuous treatment. Secondly, this neoliberal patient/addict is enabled (we could even go so far as to say ‘empowered’) by digital technology, especially smartphones and the apps available through these devices in the form of a myriad of applications for intervening and treating ones afflictions. These apps range fromself-tracking programs such as mood regulators through to social media interventions. Anti-Pokie Apps and the Neoliberal Gambler We now turn to two examples which illustrate this alignment between neoliberalism and the new “digitally engaged subject/patient” in relation to gambling. Anti-gambling apps function to both replace or ‘take the place’ of institutions and individuals actively involved in the treatment of problem gambling and re-engineer this service through the logics of ‘self-care’ and ‘self-management’. Here, we depart somewhat from Foucault’s model of disciplinary power summed up in the institution (with the prison exemplifying this disciplinary logic) and move towards Deleuze’s understanding of power as exerted by the State not through enclosures but through diffuse and rhizomatic information flows and technologies (Deleuze). At the same time, we retain Foucault’s attention to the role and agency of the user in this power-dynamic, identifiable in the technics of self-regulation and in his ideas on governmentality. We now turn to analyse these apps more closely, and explore the way in which these articulate and perform these disciplinary logics. The app Quit Pokies was a joint venture of the North East Primary Care Partnership, the Victorian Local Governance Association and the Moreland City Council, launched in early 2014. The idea of the rational, self-reflexive and agentic user is evident in the description of the app by app developer Susan Rennie who described it this way: What they need is for someone to tap them on the shoulder and tell them to get out of there… I thought the phone could be that tap on the shoulder. The “tap on the shoulder” feature uses geolocation and works by emitting a sound alert when the user enters a gaming venue. It also provides information about each user’s losses at that venue. This “tap on the shoulder” is both an alert and a reprimand from past gambling sessions. Through the Responsible Gambling Fund, the NSW government also launched an anti-pokie app in 2013, Gambling Terminator, including a similar feature. The app runs on Apple and Android smartphone platforms, and when a person is inside a gambling venue in New South Wales it: sends reminder messages that interrupt gaming-machine play and gives you a chance to re-think your choices. It also provides instant access to live phone and online counselling services which operate 24 hours a day, seven days a week. (Google Play Store) Yet an approach that tries to prevent harm by anticipating the harm that will come from gambling at the point of entering a venue, also eliminates the chance of potential negotiations and encounters a user might have during a visit to the pub and how this experience will unfold. It reduces the “tap on the shoulder”, which may involve a far wider set of interactions and affects, to a software operation and it frames the pub or the club (which under some conditions functions as hubs for socialization and community building) as dangerous places that should be avoided. This has the potential to lead to further stigmatisation of gamblers, their isolation and their exclusion from everyday spaces. Moreland Mayor, Councillor Tapinos captures the implicit framing of self-care as a private act in his explanation of the app as a method for problem gamblers to avoid being stigmatised by, for example, publicly attending group meetings. Yet, curiously, the app has the potential to create a new kind of public stigmatisation through potentially drawing other peoples’ attention to users’ gambling play (as the alarm is triggered) generating embarrassment and humiliation at being “caught out” in an act framed as aberrant and literally, “alarming”. Both Quit Pokies and Gambling Terminator require their users to perform ‘acts’ of physical and affective labour aimed at behaviour change and developing the skills of self-control. After downloading Quit Pokies on the iPhone and launching the app, the user is presented an initial request: “Before you set up this app. please write a list of the pokies venues that you regularly use because the app will ask you to identify these venues so it can send you alerts if you spend time in these locations. It will also use your set up location to identify other venues you might use so we recommend that you set up the App in the location where you spend most time. Congratulation on choosing Quit Pokies.”Self-performed processes include installation, setting up, updating the app software, programming in gambling venues to be detected by the smartphone’s inbuilt GPS, monitoring and responding to the program’s alerts and engaging in alternate “legitimate” forms of leisure such as going to the movies or the library, having coffee with a friend or browsing Facebook. These self-performed labours can be understood as ‘technologies of the self’, a term used by Foucault to describe the way in which social members are obliged to regulate and police their ‘selves’ through a range of different techniques. While Foucault traces the origins of ‘technologies of the self’ to the Greco-Roman texts with their emphasis on “care of oneself” as one of the duties of citizenry, he notes the shift to “self-knowledge” under Christianity around the 8th century, where it became bound up in ideals of self-renunciation and truth. Quit Pokies and Gambling Terminator may signal a recuperation of the ideal of self-care, over confession and disclosure. These apps institute a set of bodily activities and obligations directed to the user’s health and wellbeing, aided through activities of self-examination such as charting your recovery through a Recovery Diary and implementing a number of suggested “Strategies for Change” such as “writing a list” and “learning about ways to manage your money better”. Writing is central to the acts of self-examination. As Jeremy Prangnell, gambling counsellor from Mission Australia for Wollongong and Shellharbour regions explained the app is “like an electronic diary, which is a really common tool for people who are trying to change their behaviour” (Thompson). The labours required by users are also implicated in the functionality and performance of the platform itself suggesting the way in which ‘technologies of the self’ simultaneously function as a form of platform work: user labour that supports and sustains the operation of digital systems and is central to the performance and continuation of digital capitalism in general (Humphry, Demanding Media). In addition to the acts of labour performed on the self and platform, bodies are themselves potentially mobilised (and put into new circuits of consumption and production), as a result of triggers to nudge users away from gambling venues, towards a range of other cultural practices in alternative social spaces considered to be more legitimate.Conclusion Whether or not these technological interventions are effective or successful is yet to be tested. Indeed, the lack of recent activity in the community forums and preponderance of issues reported on installation and use suggests otherwise, pointing to a need for more empirical research into these developments. Regardless, what we’ve tried to identify is the way in which apps such as these embody a new kind of subject-state relation that emphasises self-control of gambling harm and hastens the divestment of institutional and social responsibility at a time when gambling is going through an immense period of expansion in many respects backed by and sanctioned by the state. Patterns of smartphone take up in the mainstream population and the rise of the so called ‘mobile only population’ (ACMA) provide support for this new subject and service paradigm and are often cited as the rationale for digital service reform (APSMR). Media convergence feeds into these dynamics: service delivery becomes the new frontier for the merging of previously separate media distribution systems (Dwyer). Letters, customer service centres, face-to-face meetings and web sites, are combined and in some instances replaced, with online and mobile media platforms, accessible from multiple and mobile devices. These changes are not, however, simply the migration of services to a digital medium with little effective change to the service itself. Health and medical services are re-invented through their technological re-assemblage, bringing into play new meanings, practices and negotiations among the state, industry and neoliberal subjects (in the case of problem gambling apps, a new subjectivity, the ‘neoliberal addict’). These new assemblages are as much about bringing forth a new kind of subject and mode of governance, as they are a solution to problem gambling. This figure of the self-treating “gambler addict” can be seen to be a template for, and prototype of, a more generalised and universalised self-governing citizen: one that no longer needs or makes demands on the state but who can help themselves and manage their own harm. Paradoxically, there is the potential for new risks and harms to the very same users that accompanies this shift: their outright exclusion as a result of deprivation from basic and assumed digital access and literacy, the further stigmatisation of gamblers, the elimination of opportunities for proximal support and their exclusion from everyday spaces. References Albarrán-Torres, César. “Gambling-Machines and the Automation of Desire.” Platform: Journal of Media and Communication 5.1 (2013). Australian Communications and Media Authority. “Australians Cut the Cord.” Research Snapshots. Sydney: ACMA (2013) Berry, David. Critical Theory and the Digital. Broadway, New York: Bloomsbury Academic, 2014 Berry, David. 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"Distinctive Features of the Australian Gambling Industry and Problems Faced by Australian Women Gamblers." Tourism Analysis 14.6 (2009): 867-876. Lupton, D. “The Digitally Engaged Patient: Self-Monitoring and Self-Care in the Digital Health Era.” Social Theory & Health 11.3 (2013): 256-70. Markham, Francis, and Martin Young. “Packer’s Barangaroo Casino and the Inevitability of Pokies.” The Conversation 9 July 2013. ‹http://theconversation.com/packers-barangaroo-casino-and-the-inevitability-of-pokies-15892›. Markham, Francis, and Martin Young. “Who Wins from ‘Big Gambling’ in Australia?” The Conversation 6 Mar. 2014. ‹http://theconversation.com/who-wins-from-big-gambling-in-australia-22930›.McMillen, Jan, and Katie Donnelly. "Gambling in Australian Indigenous Communities: The State of Play." The Australian Journal of Social Issues 43.3 (2008): 397. Ohtsuka, Keis, and Thai Ohtsuka. “Vietnamese Australian Gamblers’ Views on Luck and Winning: Universal versus Culture-Specific Schemas.” Asian Journal of Gambling Issues and Public Health 1.1 (2010): 34-46. Scull, Sue, Geoffrey Woolcock. “Problem Gambling in Non-English Speaking Background Communities in Queensland, Australia: A Qualitative Exploration.” International Gambling Studies 5.1 (2005): 29-44. Tanasornnarong, Nattaporn, Alun Jackson, and Shane Thomas. “Gambling among Young Thai People in Melbourne, Australia: An Exploratory Study.” International Gambling Studies 4.2 (2004): 189-203. Thompson, Angela, “Live Gambling Odds Tipped for the Chop.” Illawarra Mercury 22 May 2013: 6. Metherell, Mark. “Virtual Pokie App a Hit - But ‘Not Gambling.’” Sydney Morning Herald 13 Jan. 2013. ‹http://www.smh.com.au/digital-life/smartphone-apps/virtual-pokie-app-a-hit--but-not-gambling-20130112-2cmev.html#ixzz2QVlsCJs1›. Worthington, Andrew, et al. "Gambling Participation in Australia: Findings from the National Household Expenditure Survey." Review of Economics of the Household 5.2 (2007): 209-221. Young, Martin, et al. "The Changing Landscape of Indigenous Gambling in Northern Australia: Current Knowledge and Future Directions." International Gambling Studies 7.3 (2007): 327-343. Ziolkowski, S. “The World Count of Gaming Machines 2013.” Gaming Technologies Association, 2014. ‹http://www.gamingta.com/pdf/World_Count_2014.pdf›.

Kangatarianism is the rather inelegant word coined in the first decade of the twenty-first century to describe an omnivorous diet in which the only meat consumed is that of the kangaroo. First published in the media in 2010 (Barone; Zukerman), the term circulated in Australian environmental and academic circles including the Global Animal conference at the University of Wollongong in July 2011 where I first heard it from members of the Think Tank for Kangaroos (THINKK) group. By June 2017, it had gained enough attention to be named the Oxford English Dictionary’s Australian word of the month (following on from May’s “smashed avo,” another Australian food innovation), but it took the Nine Network reality television series Love Island Australia to raise kangatarian to trending status on social media (Oxford UP). During the first episode, aired in late May 2018, Justin, a concreter and fashion model from Melbourne, declared himself to have previously been a kangatarian as he chatted with fellow contestant, Millie. Vet nurse and animal lover Millie appeared to be shocked by his revelation but was tentatively accepting when Justin explained what kangatarian meant, and justified his choice on the grounds that kangaroo are not farmed. In the social media response, it was clear that eating only the meat of kangaroos as an ethical choice was an entirely new concept to many viewers, with one tweet stating “Kangatarian isn’t a thing”, while others variously labelled the diet brutal, intriguing, or quintessentially Australian (see #kangatarian on Twitter).There is a well developed literature around the arguments for and against eating kangaroo, and why settler Australians tend to be so reluctant to do so (see for example, Probyn; Cawthorn and Hoffman). Here, I will concentrate on the role that ethics play in this food choice by examining how the adoption of kangatarianism can be understood as a bargain struck to help to manage grief in the Anthropocene, and the limitations of that bargain. As Lesley Head has argued, we are living in a time of loss and of grieving, when much that has been taken for granted is becoming unstable, and “we must imagine that drastic changes to everyday life are in the offing” (313). Applying the classic (and contested) model of five stages of grief, first proposed by Elisabeth Kübler-Ross in her book On Death and Dying in 1969, much of the population of the western world seems to be now experiencing denial, her first stage of loss, while those in the most vulnerable environments have moved on to anger with developed countries for destructive actions in the past and inaction in the present. The next stages (or states) of grieving—bargaining, depression, and acceptance—are likely to be manifested, although not in any predictable sequence, as the grief over current and future losses continues (Haslam).The great expansion of food restrictive diets in the Anthropocene can be interpreted as part of this bargaining state of grieving as individuals attempt to respond to the imperative to reduce their environmental impact but also to limit the degree of change to their own diet required to do so. Meat has long been identified as a key component of an individual’s environmental footprint. From Frances Moore Lappé’s 1971 Diet for a Small Planet through the United Nations’ Food and Agriculture Organisation’s 2006 report Livestock’s Long Shadow to the 2019 report of the EAT–Lancet Commission on Healthy Diets from Sustainable Food Systems, the advice has been consistent: meat consumption should be minimised in, if not eradicated from, the human diet. The EAT–Lancet Commission Report quantified this to less than 28 grams (just under one ounce) of beef, lamb or pork per day (12, 25). For many this would be keenly felt, in terms of how meals are constructed, the sensory experiences associated with eating meat and perceptions of well-being but meat is offered up as a sacrifice to bring about the return of the beloved healthy planet.Rather than accept the advice to cut out meat entirely, those seeking to bargain with the Anthropocene also find other options. This has given rise to a suite of foodways based around restricting meat intake in volume or type. Reducing the amount of commercially produced beef, lamb and pork eaten is one approach, while substituting a meat the production of which has a smaller environmental footprint, most commonly chicken or fish, is another. For those willing to make deeper changes, the meat of free living animals, especially those which are killed accidentally on the roads or for deliberately for environmental management purposes, is another option. Further along this spectrum are the novel protein sources suggested in the Lancet report, including insects, blue-green algae and laboratory-cultured meats.Kangatarianism is another form of this bargain, and is backed by at least half a century of advocacy. The Australian Conservation Foundation made calls to reduce the numbers of other livestock and begin a sustainable harvest of kangaroo for food in 1970 when the sale of kangaroo meat for human consumption was still illegal across the country (Conservation of Kangaroos). The idea was repeated by biologist Gordon Grigg in the late 1980s (Jackson and Vernes 173), and again in the Garnaut Climate Change Review in 2008 (547–48). Kangaroo meat is high in protein and iron, low in fat, and high in healthy polyunsaturated fatty acids and conjugated linoleic acid, and, as these authors showed, has a smaller environmental footprint than beef, lamb, or pork. Kangaroo require less water than cattle, sheep or pigs, and no land is cleared to grow feed for them or give them space to graze. Their paws cause less erosion and compaction of soil than do the hooves of common livestock. They eat less fodder than ruminants and their digestive processes result in lower emissions of the powerful greenhouse gas methane and less solid waste.As Justin of Love Island was aware, kangaroo are not farmed in the sense of being deliberately bred, fed, confined, or treated with hormones, drugs or chemicals, which also adds to their lighter impact on the environment. However, some pastoralists argue that because they cannot prevent kangaroos from accessing the food, water, shelter, and protection from predators they provide for their livestock, they do effectively farm them, although they receive no income from sales of kangaroo meat. This type of light touch farming of kangaroos has a very long history in Australia going back to the continent’s first peopling some 60,000 years ago. Kangaroos were so important to Aboriginal people that a wide range of environments were manipulated to produce their favoured habitats of open grasslands edged by sheltering trees. As Bill Gammage demonstrated, fire was used as a tool to preserve and extend grassy areas, to encourage regrowth which would attract kangaroos and to drive the animals from one patch to another or towards hunters waiting with spears (passim, for example, 58, 72, 76, 93). Gammage and Bruce Pascoe agree that this was a form of animal husbandry in which the kangaroos were drawn to the areas prepared for them for the young grass or, more forcefully, physically directed using nets, brush fences or stone walls. Burnt ground served to contain the animals in place of fencing, and regular harvesting kept numbers from rising to levels which would place pressure on other species (Gammage 79, 281–86; Pascoe 42–43). Contemporary advocates of eating kangaroo have promoted the idea that they should be deliberately co-produced with other livestock instead of being killed to preserve feed and water for sheep and cattle (Ellicott; Wilson 39). Substituting kangaroo for the meat of more environmentally damaging animals would facilitate a reduction in the numbers of cattle and sheep, lessening the harm they do.Most proponents have assumed that their audience is current meat eaters who would substitute kangaroo for the meat of other more environmentally costly animals, but kangatarianism can also emerge from vegetarianism. Wendy Zukerman, who wrote about kangaroo hunting for New Scientist in 2010, was motivated to conduct the research because she was considering becoming an early adopter of kangatarianism as the least environmentally taxing way to counter the longterm anaemia she had developed as a vegetarian. In 2018, George Wilson, honorary professor in the Australian National University’s Fenner School of Environment and Society called for vegetarians to become kangatarians as a means of boosting overall consumption of kangaroo for environmental and economic benefits to rural Australia (39).Given these persuasive environmental arguments, it might be expected that many people would have perceived eating kangaroo instead of other meat as a favourable bargain and taken up the call to become kangatarian. Certainly, there has been widespread interest in trying kangaroo meat. In 1997, only five years after the sale of kangaroo meat for human consumption had been legalised in most states (South Australia did so in 1980), 51% of 500 people surveyed in five capital cities said they had tried kangaroo. However, it had not become a meat of choice with very few found to eat it more than three times a year (Des Purtell and Associates iv). Just over a decade later, a study by Ampt and Owen found an increase to 58% of 1599 Australians surveyed across the country who had tried kangaroo but just 4.7% eating it at least monthly (14). Bryce Appleby, in his study of kangaroo consumption in the home based on interviews with 28 residents of Wollongong in 2010, specifically noted the absence of kangatarians—then a very new concept. A study of 261 Sydney university students in 2014 found that half had tried kangaroo meat and 10% continued to eat it with any regularity. Only two respondents identified themselves as kangatarian (Grant 14–15). Kangaroo meat advocate Michael Archer declared in 2017 that “there’s an awful lot of very, very smart vegetarians [who] have opted for semi vegetarianism and they’re calling themselves ‘kangatarians’, as they’re quite happy to eat kangaroo meat”, but unless there had been a significant change in a few years, the surveys did not bear out his assertion (154).The ethical calculations around eating kangaroo are complicated by factors beyond the strictly environmental. One Tweeter advised Justin: “‘I’m a kangatarian’ isn’t a pickup line, mate”, and certainly the reception of his declaration could have been very cool, especially as it was delivered to a self declared animal warrior (N’Tash Aha). All of the studies of beliefs and practices around the eating of kangaroo have noted a significant minority of Australians who would not consider eating kangaroo based on issues of animal welfare and animal rights. The 1997 study found that 11% were opposed to the idea of eating kangaroo, while in Grant’s 2014 study, 15% were ethically opposed to eating kangaroo meat (Des Purtell and Associates iv; Grant 14–15). Animal ethics complicate the bargains calculated principally on environmental grounds.These ethical concerns work across several registers. One is around the flesh and blood kangaroo as a charismatic native animal unique to Australia and which Australians have an obligation to respect and nurture. Sheep, cattle and pigs have been subject to longterm propaganda campaigns which entrench the idea that they are unattractive and unintelligent, and veil their transition to meat behind euphemistic language and abattoir walls, making it easier to eat them. Kangaroos are still seen as resourceful and graceful animals, and no linguistic tricks shield consumers from the knowledge that it is a roo on their plate. A proposal in 2009 to market a “coat of arms” emu and kangaroo-flavoured potato chip brought complaints to the Advertising Standards Bureau that this was disrespectful to these native animals, although the flavours were to be simulated and the product vegetarian (Black). Coexisting with this high regard to kangaroos is its antithesis. That is, a valuation of them informed by their designation as a pest in the pastoral industry, and the use of the carcasses of those killed to feed dogs and other companion animals. Appleby identified a visceral, disgust response to the idea of eating kangaroo in many of his informants, including both vegetarians who would not consider eating kangaroo because of their commitment to a plant-based diet, and at least one omnivore who would prefer to give up all meat rather than eat kangaroo. While diametrically opposed, the end point of both positions is that kangaroo meat should not be eaten.A second animal ethics stance relates to the imagined kangaroo, a cultural construct which for most urban Australians is much more present in their lives and likely to shape their actions than the living animals. It is behind the rejection of eating an animal which holds such an iconic place in Australian culture: to the dexter on the 1912 national coat of arms; hopping through the Hundred Acre Wood as Kanga and Roo in A.A. Milne’s Winnie-the-Pooh children’s books from the 1920s and the Disney movies later made from them; as a boy’s best friend as Skippy the Bush Kangaroo in a fondly remembered 1970s television series; and high in the sky on QANTAS planes. The anthropomorphising of kangaroos permitted the spectacle of the boxing kangaroo from the late nineteenth century. By framing natural kangaroo behaviours as boxing, these exhibitions encouraged an ambiguous understanding of kangaroos as human-like, moving them further from the category of food (Golder and Kirkby). Australian government bodies used this idea of the kangaroo to support food exports to Britain, with kangaroos as cooks or diners rather than ingredients. The Kangaroo Kookery Book of 1932 (see fig. 1 below) portrayed kangaroos as a nuclear family in a suburban kitchen and another official campaign supporting sales of Australian produce in Britain in the 1950s featured a Disney-inspired kangaroo eating apples and chops washed down with wine (“Kangaroo to Be ‘Food Salesman’”). This imagining of kangaroos as human-like has persisted, leading to the opinion expressed in a 2008 focus group, that consuming kangaroo amounted to “‘eating an icon’ … Although they are pests they are still human nature … these are native animals, people and I believe that is a form of cannibalism!” (Ampt and Owen 26). Figure 1: Rather than promoting the eating of kangaroos, the portrayal of kangaroos as a modern suburban family in the Kangaroo Kookery Book (1932) made it unthinkable. (Source: Kangaroo Kookery Book, Director of Australian Trade Publicity, Australia House, London, 1932.)The third layer of ethical objection on the ground of animal welfare is more specific, being directed to the method of killing the kangaroos which become food. Kangaroos are perhaps the only native animals for which state governments set quotas for commercial harvest, on the grounds that they compete with livestock for pasturage and water. In most jurisdictions, commercially harvested kangaroo carcasses can be processed for human consumption, and they are the ones which ultimately appear in supermarket display cases.Kangaroos are killed by professional shooters at night using swivelling spotlights mounted on their vehicles to locate and daze the animals. While clean head shots are the ideal and regulations state that animals should be killed when at rest and without causing “undue agonal struggle”, this is not always achieved and some animals do suffer prolonged deaths (NSW Code of Practice for Kangaroo Meat for Human Consumption). By regulation, the young of any female kangaroo must be killed along with her. While averting a slow death by neglect, this is considered cruel and wasteful. The hunt has drawn international criticism, including from Greenpeace which organised campaigns against the sale of kangaroo meat in Europe in the 1980s, and Viva! which was successful in securing the withdrawal of kangaroo from sale in British supermarkets (“Kangaroo Meat Sales Criticised”). These arguments circulate and influence opinion within Australia.A final animal ethics issue is that what is actually behind the push for greater use of kangaroo meat is not concern for the environment or animal welfare but the quest to turn a profit from these animals. The Kangaroo Industries Association of Australia, formed in 1970 to represent those who dealt in the marsupials’ meat, fur and skins, has been a vocal advocate of eating kangaroo and a sponsor of market research into how it can be made more appealing to the market. The Association argued in 1971 that commercial harvest was part of the intelligent conservation of the kangaroo. They sought minimum size regulations to prevent overharvesting and protect their livelihoods (“Assn. Backs Kangaroo Conservation”). The Association’s current website makes the claim that wild harvested “Australian kangaroo meat is among the healthiest, tastiest and most sustainable red meats in the world” (Kangaroo Industries Association of Australia). That this is intended to initiate a new and less controlled branch of the meat industry for the benefit of hunters and processors, rather than foster a shift from sheep or cattle to kangaroos which might serve farmers and the environment, is the opinion of Dr. Louise Boronyak, of the Centre for Compassionate Conservation at the University of Technology Sydney (Boyle 19).Concerns such as these have meant that kangaroo is most consumed where it is least familiar, with most of the meat for human consumption recovered from culled animals being exported to Europe and Asia. Russia has been the largest export market. There, kangaroo meat is made less strange by blending it with other meats and traditional spices to make processed meats, avoiding objections to its appearance and uncertainty around preparation. With only a low profile as a novelty animal in Russia, there are fewer sentimental concerns about consuming kangaroo, although the additional food miles undermine its environmental credentials. The variable acceptability of kangaroo in more distant markets speaks to the role of culture in determining how patterns of eating are formed and can be shifted, or, as Elspeth Probyn phrased it “how natural entities are transformed into commodities within a context of globalisation and local communities”, underlining the impossibility of any straightforward ethics of eating kangaroo (33, 35).Kangatarianism is a neologism which makes the eating of kangaroo meat something it has not been in the past, a voluntary restriction based on environmental ethics. These environmental benefits are well founded and eating kangaroo can be understood as an Anthropocenic bargain struck to allow the continuation of the consumption of red meat while reducing one’s environmental footprint. Although superficially attractive, the numbers entering into this bargain remain small because environmental ethics cannot be disentangled from animal ethics. The anthropomorphising of the kangaroo and its use as a national symbol coexist with its categorisation as a pest and use of its meat as food for companion animals. Both understandings of kangaroos made their meat uneatable for many Australians. Paired with concerns over how kangaroos are killed and the commercialisation of a native species, kangaroo meat has a very mixed reception despite decades of advocacy for eating its meat in favour of that of more harmed and more harmful introduced species. Given these constraints, kangatarianism is unlikely to become widespread and indeed it should be viewed as at best a temporary exigency. As the climate warms and rainfall becomes more erratic, even animals which have evolved to suit Australian conditions will come under increasing pressure, and humans will need to reach Kübler-Ross’ final state of grief: acceptance. In this case, this would mean acceptance that our needs cannot be placed ahead of those of other animals.ReferencesAmpt, Peter, and Kate Owen. Consumer Attitudes to Kangaroo Meat Products. Canberra: Rural Industries Research and Development Corporation, 2008.Appleby, Bryce. “Skippy the ‘Green’ Kangaroo: Identifying Resistances to Eating Kangaroo in the Home in a Context of Climate Change.” BSc Hons, U of Wollongong, 2010 <http://ro.uow.edu.au/thsci/103>.Archer, Michael. “Zoology on the Table: Plenary Session 4.” Australian Zoologist 39, 1 (2017): 154–60.“Assn. Backs Kangaroo Conservation.” The Beverley Times 26 Feb. 1971: 3. 22 Feb. 2019 <http://nla.gov.au/nla.news-article202738733>.Barone, Tayissa. “Kangatarians Jump the Divide.” Sydney Morning Herald 9 Feb. 2010. 13 Apr. 2019 <https://www.smh.com.au/lifestyle/kangatarians-jump-the-divide-20100209-gdtvd8.html>.Black, Rosemary. “Some Australians Angry over Idea for Kangaroo and Emu-Flavored Potato Chips.” New York Daily News 4 Dec. 2009. 5 Feb. 2019 <https://www.nydailynews.com/life-style/eats/australians-angry-idea-kangaroo-emu-flavored-potato-chips-article-1.431865>.Boyle, Rhianna. “Eating Skippy.” Big Issue Australia 578 11-24 Jan. 2019: 16–19.Cawthorn, Donna-Mareè, and Louwrens C. Hoffman. “Controversial Cuisine: A Global Account of the Demand, Supply and Acceptance of ‘Unconventional’ and ‘Exotic’ Meats.” Meat Science 120 (2016): 26–7.Conservation of Kangaroos. Melbourne: Australian Conservation Foundation, 1970.Des Purtell and Associates. Improving Consumer Perceptions of Kangaroo Products: A Survey and Report. Canberra: Rural Industries Research and Development Corporation, 1997.Ellicott, John. “Little Pay Incentive for Shooters to Join Kangaroo Meat Industry.” The Land 15 Mar. 2018. 28 Mar. 2019 <https://www.theland.com.au/story/5285265/top-roo-shooter-says-harvesting-is-a-low-paid-job/>.Garnaut, Ross. Garnaut Climate Change Review. 2008. 26 Feb. 2019 <http://www.garnautreview.org.au/index.htm>.Gammage, Bill. The Biggest Estate on Earth: How Aborigines Made Australia. Sydney: Allen and Unwin, 2012.Golder, Hilary, and Diane Kirkby. “Mrs. Mayne and Her Boxing Kangaroo: A Married Woman Tests Her Property Rights in Colonial New South Wales.” Law and History Review 21.3 (2003): 585–605.Grant, Elisabeth. “Sustainable Kangaroo Harvesting: Perceptions and Consumption of Kangaroo Meat among University Students in New South Wales.” Independent Study Project (ISP). U of NSW, 2014. <https://digitalcollections.sit.edu/isp_collection/1755>.Haslam, Nick. “The Five Stages of Grief Don’t Come in Fixed Steps – Everyone Feels Differently.” The Conversation 22 Oct. 2018. 28 Mar. 2019 <https://theconversation.com/the-five-stages-of-grief-dont-come-in-fixed-steps-everyone-feels-differently-96111>.Head, Lesley. “The Anthropoceans.” Geographical Research 53.3 (2015): 313–20.Kangaroo Industries Association of Australia. Kangaroo Meat. 26 Feb. 2019 <http://www.kangarooindustry.com/products/meat/>.“Kangaroo Meat Sales Criticised.” The Canberra Times 13 Sep. 1984: 14. 22 Feb 2019 <http://nla.gov.au/nla.news-article136915919>.“Kangaroo to Be Food ‘Salesman.’” Newcastle Morning Herald and Miners’ Advocate, 2 Dec. 1954. 22 Feb 2019 <http://nla.gov.au/nla.news-article134089767>.Kübler-Ross, Elisabeth. On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy, and their own Families. New York: Touchstone, 1997.Jackson, Stephen, and Karl Vernes. Kangaroo: Portrait of an Extraordinary Marsupial. Sydney: Allen and Unwin, 2010.Lappé, Frances Moore. Diet for a Small Planet. New York: Ballantine Books, 1971.N’Tash Aha (@Nsvasey). “‘I’m a Kangatarian’ isn’t a Pickup Line, Mate. #LoveIslandAU.” Twitter post. 27 May 2018. 5 Apr. 2019 <https://twitter.com/Nsvasey/status/1000697124122644480>.“NSW Code of Practice for Kangaroo Meat for Human Consumption.” Government Gazette of the State of New South Wales 24 Mar. 1993. 22 Feb. 2019 <http://nla.gov.au/nla.news-page14638033>.Oxford University Press, Australia and New Zealand. Word of the Month. June 2017. <https://www.oup.com.au/dictionaries/word-of-the-month>.Pascoe, Bruce. Dark Emu, Black Seeds: Agriculture or Accident? Broome: Magabala Books, 2014.Probyn, Elspeth. “Eating Roo: Of Things That Become Food.” New Formations 74.1 (2011): 33–45.Steinfeld, Henning, Pierre Gerber, Tom Wassenaar, Vicent Castel, Mauricio Rosales, and Cees d Haan. Livestock’s Long Shadow: Environmental Issues and Options. Rome: Food and Agriculture Organisation of the United Nations, 2006.Trust Nature. Essence of Kangaroo Capsules. 26 Feb. 2019 <http://ncpro.com.au/products/all-products/item/88139-essence-of-kangaroo-35000>.Victoria Department of Environment, Land, Water and Planning. Kangaroo Pet Food Trial. 28 Mar. 2019 <https://www.wildlife.vic.gov.au/managing-wildlife/wildlife-management-and-control-authorisations/kangaroo-pet-food-trial>.Willett, Walter, et al. “Food in the Anthropocene: The EAT–Lancet Commission on Healthy Diets from Sustainable Food Systems.” The Lancet 16 Jan. 2019. 26 Feb. 2019 <https://www.thelancet.com/commissions/EAT>.Wilson, George. “Kangaroos Can Be an Asset Rather than a Pest.” Australasian Science 39.1 (2018): 39.Zukerman, Wendy. “Eating Skippy: The Future of Kangaroo Meat.” New Scientist 208.2781 (2010): 42–5.

As a mode of open access public self-expression, blogs are one form of the unfolding massification of culture (Lovink). Though widely varied in content and style, they are characterised by a reverse chronological diary-like format, often produced by a single author, and often intimately expressive of that author’s thoughts and experiences. The purpose of this paper is to explore the use of blogs as a space for the detailed and on-going expression of the day to day experiences of sufferers of serious illness. We might traditionally consider the experience of illness as absolutely private, but illness, along with the process of recovery, retains a social and cultural aspect (Kleinman et al). A growing body of literature has recognised that the Internet has become a significant space for the recovery work that accompanies the diagnosis of serious illness (Orgad; Pitts; Hardey). Empowerment and agency are often emphasised in this literature, particularly in terms of the increased access to information and support groups, but also in the dynamic performances of self enabled by different forms of online communication and Web production. I am particularly interested in the ongoing shifts in the accessibility of “private” personal experience enabled by blog culture. Although there are thousands of others like them, three “illness blogs” have recently caught my attention for their candidness, completeness and complexity, expressing in vivid depth and detail individual lives transformed by serious illness. The late US journalist and television producer Leroy Sievers maintained a high profile blog, My Cancer, and weekly podcast on the National Public Radio website until his death from metastasised colon cancer in August 2008. Sievers used his public profile and the infrastructure of the NPR website to both detail his personal experience and bring together a community of people also affected by cancer or moved by his thoughts and experiences. The blogger Brainhell came to my attention through blogsphere comments and tributes when he died in February 2008. Spanning more than four years, Brainhell’s witty and charming blog attracted a significant audience and numerous comments, particularly toward the end of his life as the signs of his deteriorating motor system as a result of Amyotrophic Lateral Sclerosis (ALS, or “Lou Gherig’s disease”) riddled his intimate posts. Another blog of interest to me here, called Humanities Researcher, incorporates academic Stephanie Trigg’s period of illness and recovery from breast cancer within a pre-existing and ongoing blog about the intersection between professional and personal life. As I had crossed paths with Trigg while at Melbourne University, I was always interested in her blog. But her diagnosis with breast cancer and subsequent accounts of tests, the pain and debilitation of treatment and recovery within her blog also offer valuable insight into the role of online technologies in affecting experiences of illness and for the process of recovery.The subject matter of illness blogs revolves around significant personal transformations as a result of serious illness or trauma: transformations of everyday life, of body and emotional states, relationships, physical appearance, and the loss or recovery of physical ability. It is not my intention in this brief analysis to overgeneralise on the basis of some relatively limited observations. However, many blogs written in response to illness stand out for what they reveal about the shifting location or locatability of self, experience and the events of ongoing illness and thus how we can conceptualise the inherent “privacy” of illness as personal experience. Self-expression here is encompassing of the possibilities through which illness can be experienced – not as representation of that experience, a performance of a disembodied self (though these notions have their merits) – but an expressive element of the substance of the illness as it is experienced over time, as it affects the bodies, thoughts, events and relationships of individuals moving toward a state of full recovery or untimely death. Locating Oneself OnlineMany authors currently examining the role of online spaces in the lives of sufferers of serious illness see online communication as providing a means for configuring experience as a meaningful and coherent story, and thus conferring, or we could say recovering, a sense of agency amidst a tumultuous and ongoing battle with serious illness (Orgad, Pitts). In her study of breast cancer discussion forums, message boards and websites, Orgad (4) notes their role in regaining “the fundamentals disturbed by cancer” (see also Bury). Well before the emergence of online spaces, the act or writing has been seen as “a crucial affirmation of living, a statement against fearfulness, invisibility and silence” (Orgad, 67; Lorde, 61). For many decades scientists have asserted that “brief structured writing sessions can significantly improve mental and physical health for some groups of people” (Singer and Singer 485). The Internet has provided an infrastructure for bringing personal experiences of illness into the public realm, enabling a new level of visibility. Much of the work on illness and the Internet focuses on the liberatory and empowering act of story telling and “disembodied” self-expression. Discussion forums and cancer websites enable the formation of patient led “discourse communities” (Wuthnow). Online spaces such as discussion forums help their participants gain a foothold within a world they share with other sufferers, building communities of practice (Wegner) around specific forms of illness. In this way, these forms of self-expression and communication enable the sufferer of serious illness to counter the modes by which they are made “subjects”, in the Foucauldian sense, of medical discourse. All illness narratives are defined and constructed socially, and are infused with relations of power (Sontag; Foucault, Birth of the Clinic). Forms of online communication have shifted productive practice from professions to patients. Blogs, like discussion forums, websites, email lists etc., have come to play a central role in this contemporary shift. When Lovink (6) describes blogs as a “technology of the self” he points to their role in “self-fashioning”. Blogs written about and in the context of personal illness are a perfect example of this inclination to speak the truth of oneself in the confessional mode of modern culture borne of the church, science and talkshow television. For Foucault (Technologies of the Self, 17), technologies of the self: Permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct and way of being, so as to transform themselves in order to attain a state of happiness, purity, wisdom, perfection, immortality. Likewise, as a central concept for understanding Internet identity, the notion of performance (eg, Turkle) highlights the creativity with which illness bloggers may present their role as cancer patient in online spaces, perhaps as an act of resistance to “subjectifying” medical discourses and practices. Many bloggers wrest semiotic power through regular discussion of the language of pathology and medical knowledge, treatment processes and drugs. In the early stages of her treatment, Trigg plays with the new vocabulary, searching for etiologies and making her own semantic connections: I’ve learnt two new words. “Spiculated” describes the characteristic shape of a carcinoma on an ultrasound or x-ray. …The other word is at the other end of the spectrum of linguistic beauty: “lumpectomy”. It took me quite a while to realise that this was not really any different from partial mastectomy; or local excision. It’s an example of the powerful semantic connotations of words to realise that these phrases name the same processes: a long cut, and then the extraction of the diseased tissue (Humanities Researcher, 14 Oct. 2006).Partly due to the rarity of his illness, Brainhell goes through weeks of waiting for a diagnosis, and posts prolifically in an attempt to test out self-diagnoses. Amidst many serious and humorous posts analysing test results and discussing possible diagnoses Brainhell reflects on his targeted use of the blog: I am a word person. I think in sentences. I often take complex technical problems at work and describe them to myself in words. A story helps me understand things better. This blog has become a tool for me to organize my own thoughts about the Mystery Condition. (Brainhell, 6 Jan. 2004)The emancipatory potential of blog writing, however, can be easily overstated. While it is valuable to note and celebrate the performative potential of online production, and its “transformative” role as a technology of the self, it is easy to fall back on an unproblematic distinction between the actual and the virtual, the experience of illness, and its representation in online spaces. Textual expression should always refer us to the extra-textual practices that encompass it without imposing an artificial hierarchy of online and offline, actual experience and representation. As with other forms of online communication and production, the blog culture that has emerged around forms of serious illness plays a significant role in transforming our concepts of the relationship between online and offline spaces. In his My Cancer blog, Sievers often refers to “Cancer World”. He notes, for example, the many “passing friends” he makes in Cancer World through the medical staff and other regular patients at the radiation clinic, and refers to the equipment that sustains his life as the accoutrements of this world. His blog posts revolved around an articulation of the intricacies of this “world” that is in some ways a means of making sense of that world, but is also expressive of it. Sievers tries to explain the notion of Cancer World as a transformation of status between insider & outsider: “once we cross over into Cancer World, we become strangers in a strange land. What to expect, what to hope for, what to fear – none of those are clear right now” (My Cancer, 30 June 2008). Part of his struggle with the illness is also with the expression of himself as encompassed by this new “world” of the effects and activities of cancer. In a similar way, in her Humanities Researcher blog Trigg describes in beautiful detail the processes, routines and relationships formed during radiation treatment. I see these accounts of the textures of cancer spaces as lying at the point of juncture between expression and experience, not as a disembodied, emancipatory realm free from the fetters of illness and the everyday “real” self, but always encompassed by, and encompassing them, and in this way shifting what might be understood to remain “private” in personal experience and self-expression. Blogs as Public Diary Axel Bruns (171), following Matthew Rothenberg, characterises blogs as an accessible technological extension of the personal home page, gaining popularity in the late 1990s because they provided more easy to use templates and web publishing tools than earlier webpage applications. Personalised self expression is a defining element. However, the temporal quality of the reverse chronological, timestamped entry is equally significant for Bruns (171). Taking a broader focus to Bruns, who is most interested in the potential democratisation of media in news related blogs, Lovink sees the experimentation with a “public diary” format as fundamental, signalling their “productive contradiction between public and private” (Lovink 6). A diary may be written for posterity but it is primarily a secretive mode of communication. While blogs may mirror the temporal form of a diary, their intimate focus on self-expression of experience, thoughts and feelings, they do so in a very different communicative context.Despite research suggesting that a majority of bloggers report that they post primarily “for themselves” (Lenhart and Fox) – meaning that they do not deliberately seek a broad audience or readership – the step of making experiences and thoughts so widely accessible cannot be overlooked in any account of blogging. The question of audience or readership, for example, concerns Trigg in her Humanities Researcher blog: The immediacy of a blog distinguishes it from a journal or diary. I wrote for myself, of course, but also for a readership I could measure and chart and hear from, sometimes within minutes of posting. Mostly I don’t know who my readers are, but the kindness and friendship that come to me through the blog gave me courage to write about the intimacies of my treatment; and to chart the emotional upheaval it produced. (Trigg)In their ability to produce a comprehensive expression of the events, experiences, thoughts and feelings of an individual, blogs differ to other forms of online communication such as discussion forums or email lists. Illness blogs are perhaps an extreme example, an open mode of self-expression often arising abruptly in reaction to a life transforming diagnosis and tracking the process of recovery or deterioration, usually ending with remission or death. Brainhell’s blog begins with MRI results, and a series of posts about medical examination and self-examination regarding his mystery condition: So the MRI shows there is something on my brain that is not supposed to be there. The doctor thinks it is not a tumor. That would be good news. …As long as you are alive and have someone to complain to, you ain’t bad off. I am alive and I am complaining about a mystery spot on my brain, and lazy limbs. (Brainhell, 24 Dec. 2003)Brainhell spent many weeks documenting his search for a diagnosis, and continued writing up to his final deterioration and death in 2008. His final posts convey his physical deterioration in truncated sentences, spelling errors and mangled words. In one post he expresses his inability to wake his caregiver and to communicate his distress and physical discomfort at having to pee: when he snorted on waking, i shrieked and he got me up. splayed uncomfortably in the wc as he put dry clothes on me, i was gifted with his words: “you choose this, not me. you want to make it hard, what can i do?” (Brainhell, 13 Jan. 2008). The temporal and continuous format of the blog traverses the visceral, corporeal transformations of body and thought over time. The diary format goes beyond a straightforward narrative form in being far more experiential and even experimental in its self-reflective expression of the events of daily life, thoughts, feelings and states of being. Its public format bears directly on its role in shaping the communicative context in which that expression takes place, and thus to an extent shapes the experience of the illness itself. Nowhere does the expressive substance of the blog so fully encompass the possibilities through which the illness could be experienced than in the author’s death. At this point the blog feels like it is more than a catalogue, dialogue or self-presentation of a struggle with illness. It may take on the form of a memorial (see for example Tom’s Road to Recovery) – a recovery of the self expressed in the daily physical demise, through data maintained in the memory of servers. Ultimately the blog stands as a complex trace of the life lived within its posts. Brainhell’s lengthy blog exemplifies this quite hauntingly. Revealing the Private in Public Blogs exemplify a further step in the transformation of notions of public and private brought about by information and screen technologies. McQuire (103) refers to contemporary screen and Internet culture as “a social setting in which personal identity is subject to new exigencies”. Reality television, such as Big Brother, has promoted “a new mode for the public viewing of private life” (McQuire 114) contributing to the normalisation of open access to personal, intimate revelations, actions and experiences. However, privacy is “an elusive concept” that relates as much to information and property as to self-expression and personal experience (McCullagh). That is, what we consider private to an individual is itself constituted by our variable categories of personal information, material or immaterial possessions, or what counts as an expression of personal experience. Some analysts of online storytelling in the context of illness recognise the unsustainability of the distinction between public and private, but nonetheless rely on the notion of a continuum upon which activities or events could be considered as experienced in a public or private space (Orgad, 129-133). One of the characteristics of a blog, unlike other forms of online communication such as chat, discussion forums and email, is its predominantly public and openly accessible form. Though many illness bloggers do not seem to seek anonymity or hold back in allowing massive access to their self-expression and personal experience, a tension always seems to be there in the background. Identification through the proper name simply implies potential broader effects of blog writing, a pairing of the personal expressions with the person who expresses them in broader daily interactions and relationships. As already “public” figures, Stephanie Trigg and Leroy Sievers choose to forego anonymity, while Brainhell adopted his alias from the beginning and guarded his anonymity carefully. Each of these bloggers, however, shows signs of grappling with the public character of their site, and the interaction between the blog and their everyday life and relationships. In his etiquette page, Brainhell seems unclear about his readership, noting that his blog is for “friends and soul-mates, and complete strangers too”, but that he has not shared it with his family or all of his friends. He goes on to say: You may not have been invited but you are still welcome here. I made it public so that anyone could read it. Total strangers are welcome. Invited friends are welcome. But of those invited friends, I ask you to ask me before you out me as the blog author, or share the blog with other people who already know me. (Brainhell, 18 Feb. 2004) After his death Ratty took steps to continue to maintain his anonymity, vetting many comments and deleting others to “honor BH’s wishes as he outline in ‘Ettiquett for This Blog”’ (Brainhell, 2 Feb. 2008). In Leroy Sievers’ blog, one post exploring the conflict raised by publicly “sharing” his experiences provoked an interesting discussion. He relays a comment sent to him by a woman named Cherie: I have stage four colorectal cancer with liver mets. This is a strange journey, one I am not entirely sure I can share with my loved ones. I am scared it might rob them of the hope I see in their eyes. The hope which I sometimes don’t believe in. (My Cancer, 26 July 2006) Sievers struggles with this question: “How do you balance the need to talk about what is happening to you with the tears of a close friend when you tell him or her the truth? There’s no simple answer.” The blog, in this sense, seems to offer a more legitimate space for the ongoing, detailed expression of these difficult and affective, and traditionally private experiences. In some posts the privacy of the body and bodily experiences is directly challenged or re-negotiated. Stephanie Trigg was concerned with the effect of the blog on her interactions with colleagues. But another interesting dilemma presents itself to her when she is describing the physical effects of cancer, surgery and radiation treatment on her breast, and forces herself to hold back from comparing with the healthy breast: “it's not a medical breast, so I can't write about it here” (Humanities Researcher, 10 Jan. 2007). One prostate cancer blogger, identified as rdavisjr, seems to have no difficulties expressing the details of a physical intrusion on his “privacy” in the far more open forum of his blog: The pull-around ceiling mounted screen was missing (laundry?), so Kelly was called into the room and told to make a screen with a bed sheet. So here I am with one woman sticking her finger up my ass, while another woman is standing in front of the door holding an outstretched bed sheet under her chin (guess she wanted a view!)The screen was necessary to ensure my privacy in the event someone accidentally came into the room, something they said was a common thing. Well, Kelly peering over that sheet was hardly one of my more private moments in life! (Prostate Cancer Journal, 23 Feb. 2001). ConclusionWhatever emancipatory benefits may be found in expressing the most intimate of experiences and events of a serious illness online, it is the creative act of the blog as self-expression here, in its visceral, comprehensive, continuous timestamped format that dismantles the sense of privacy in the name of recovery. The blog is not the public face of private personal experience, but expressive of the life encompassed by that illness, and encompassing its author’s ongoing personal transformation. The blogs discussed here are not alone in demonstrating these practices. The blog format itself may soon evolve or disappear. Nonetheless, the massification enabled by Internet technologies and applications will continue to transform the ways in which personal experience may be considered private. ReferencesBruns, Axel. 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