Caring for a marginalised community: the costs of engaging with culture and complexity

The document attached has been archived with permission from the editor of the Medical Journal of Australia. An external link to the publisher’s copy is included.The Care and Prevention Programme (CPP) began in 1998. It is based on the philosophy of primary health care, and has improved health among homosexually active men, including about a third of HIV-positive South Australians. The CPP was assessed using financial analysis and qualitative methods. Participants wanted to access care where they could feel comfortable and safe to talk about issues of sexuality and lifestyle. The CPP model is "economically" sustainable, but not "financially" sustainable within the Medicare Benefits Schedule. It is vulnerable to changes in political environment. The financing model for the CPP has been adapted by including state funding. General practitioners have adapted by lowering their personal incomes (but not quality of care). These adaptations have achieved fragile financial viability. Facilitators of sustainability for the CPP included: It is part of the community that it serves; The creation of deeply integrated networks of diversity-competent service providers; and "Virtuous non-adaptability" of service providers in refusing to compromise care standards despite financial pressure to do so. Threats to sustainability included: Difficulty maintaining a diversity-competent workforce skilled in HIV medicine; Marginal financial viability; and Political vulnerability.Gary D Rogers, Christopher A Barton, Brita A Pekarsky, Ann C Lawless, Joy M Oddy, Rebecca Hepworth and Justin J Beilb

Providing healthcare for people with chronic illness: the views of Australian GPs

The document attached has been archived with permission from the editor of the Medical Journal of Australia (26 April 2007). An external link to the publisher’s copy is included.OBJECTIVES: To explore general practitioners' views on chronic-disease care: the difficulties and rewards, the needs of patients, the impact of government incentive payments, and the changes needed to improve chronic-disease management. DESIGN: Qualitative study, involving semi-structured questions administered to 10 focus groups of GPs, conducted from April to October 2002. PARTICIPANTS AND SETTING: 54 GPs from both urban and rural practices in New South Wales and South Australia. RESULTS: Consistent themes emerged about the complex nature of chronic-disease management, the tension between patients' and GPs' goals for care, the time-consuming aspects of care (exacerbated by federal government requirements), and the conflicting pressures that prevent GPs engaging in structured multidisciplinary care (ie, team-based care involving systems for patient monitoring, recall, and care planning). CONCLUSIONS: Structured multidisciplinary care for people with chronic conditions can be difficult to provide. Barriers include the lack of fit between systems oriented towards acute care and the requirements of chronic-disease care, and between bureaucratic, inflexible structures and the complex, dynamic nature of GP–patient relationships. These problems are exacerbated by administrative pressures associated with federal government initiatives to improve chronic-illness management. Changes are needed in both policies and attitudes to enable GPs to move from episodic care to providing structured long-term care as part of a multidisciplinary team.John Oldroyd, Judith Proudfoot, Fernando A Infante, Gawaine Powell Davies, Tanya Bubner, Chris Holton, Justin J Beilby and Mark F Harri

Healthcare system priorities for successful integration of genomics: An Australian focus

This paper examines key considerations for the successful integration of genomic technologies into healthcare systems. All healthcare systems strive to introduce new technologies that are effective and affordable, but genomics offers particular challenges, given the rapid evolution of the technology. In this context we frame internationally relevant discussion points relating to effective and sustainable implementation of genomic testing within the strategic priority areas of the recently endorsed Australian National Health Genomics Policy Framework. The priority areas are services, data, workforce, finances, and person-centred care. In addition, we outline recommendations from a government perspective through the lens of the Australian health system, and argue that resources should be allocated not to just genomic testing alone, but across the five strategic priority areas for full effectiveness

A review of structural brain abnormalities in Pallister-Killian syndrome

Background Pallister-Killian syndrome (PKS) is a rare multisystem developmental syndrome usually caused by mosaic tetrasomy of chromosome 12p that is known to be associated with neurological defects. Methods We describe two patients with PKS, one of whom has bilateral perisylvian polymicrogyria (PMG), the other with macrocephaly, enlarged lateral ventricles and hypogenesis of the corpus callosum. We have also summarized the current literature describing brain abnormalities in PKS. Results We reviewed available cases with intracranial scans (n = 93) and found a strong association between PKS and structural brain abnormalities (77.41%; 72/93). Notably, ventricular abnormalities (45.83%; 33/72), abnormalities of the corpus callosum (25.00%; 18/72) and cerebral atrophy (29.17%; 21/72) were the most frequently reported, while macrocephaly (12.5%; 9/72) and PMG (4.17%; 3/72) were less frequent. To further understand how 12p genes might be relevant to brain development, we identified 63 genes which are enriched in the nervous system. These genes display distinct temporal as well as region-specific expression in the brain, suggesting specific roles in neurodevelopment and disease. Finally, we utilized these data to define minimal critical regions on 12p and their constituent genes associated with atrophy, abnormalities of the corpus callosum, and macrocephaly in PKS. Conclusion Our study reinforces the association between brain abnormalities and PKS, and documents a diverse neurogenetic basis for structural brain abnormalities and impaired function in children diagnosed with this rare disorder

Organisational capacity and chronic disease care - An Australian general practice perspective

Copyright © 2007 Australian Family Physician Copyright to Australian Family Physician. Reproduced with permission. Permission to reproduce must be sought from the publisher, The Royal Australian College of General Practitioners.Although we are rapidly improving our understanding of how to manage patients with chronic illness in Australian general practice, many patients are still receiving suboptimal care. General practices have limited organisational capacity to provide the structured care that is required for managing chronic conditions: regular monitoring, decision support, patient recall, supporting patient self management, team work, and information management. This requires a shift away from episodic, acute models. Overseas research has shown that areas such as team work, clinical information systems, decision support, linkages and leadership are also important in managing chronic illness, but we do not know which of these are most important in Australia.Judith Proudfoot, Fernando Infante, Christine Holton, Gawaine Powell-Davies, Tanya Bubner, Justin Beilby, Mark Harri

Antimicrobial Drug Resistance, Regulation, and Research1

Research models and regulatory measures could aid in developing antimicrobial drugs to address bacterial resistance

Translating a health service intervention into a rural setting: lessons learned Organization, structure and delivery of healthcare

Published: 18 February 2016Limited research exists on the process of applying knowledge translation (KT) methodology to a rural-based population health intervention.This study reports on the implementation and translational stages of a previously described Co-creating KT (Co-KT) framework in the rural town of Port Lincoln, South Australia (population: 14,000). The Co-KT framework involves five steps: (i) collecting local data; (ii) building stakeholder relationships; (iii) designing an evidence-based intervention incorporating local knowledge; (iv) implementation and evaluation of the intervention; and (v) translating the research into policy and practice. Barriers and enablers to the overall Co-KT implementation process were identified. Our intervention focused on musculoskeletal (MSK) conditions.Although the Co-KT framework was valuable in engaging with the community, translating the final intervention into daily clinical practice was prevented by a lack of an accessible policy or financial framework to anchor the appropriate intervention, a lack of continued engagement with stakeholders, access problems to general practitioners (GPs) and Allied Health Professionals; and the paucity of referrals from GPs to Allied Health Professionals. Consequently, while many aspects of the intervention were successful, including the improvement of both function and pain in study participants, the full implementation of the Co-KT framework was not possible.This study implemented and evaluated a Co-KT framework for a population with MSK conditions, linking locally generated health care system knowledge with academic input. Further policy, health system changes, and on-the-ground support are needed to overcome the identified implementation challenges in order to create sustainable and effective system change.Elsa Dent, Elizabeth Hoon, Alison Kitson, Jonathan Karnon, Jonathan Newbury, Gillian Harvey, Tiffany K. Gill, Lauren Gillis and Justin Beilb

Prevalence, Characteristics, and Prognostic Significance of HFE Gene Mutations in Type 2 Diabetes: The Fremantle Diabetes Study

OBJECTIVE—To examine the relationship between iron status, hereditary hemochromatosis (HFE) gene mutations, and clinical features and outcomes of type 2 diabetes in a well-characterized representative sample of community-based patients

Genome-wide trans-ancestry meta-analysis provides insight into the genetic architecture of type 2 diabetes susceptibility.

To further understanding of the genetic basis of type 2 diabetes (T2D) susceptibility, we aggregated published meta-analyses of genome-wide association studies (GWAS), including 26,488 cases and 83,964 controls of European, east Asian, south Asian and Mexican and Mexican American ancestry. We observed a significant excess in the directional consistency of T2D risk alleles across ancestry groups, even at SNPs demonstrating only weak evidence of association. By following up the strongest signals of association from the trans-ethnic meta-analysis in an additional 21,491 cases and 55,647 controls of European ancestry, we identified seven new T2D susceptibility loci. Furthermore, we observed considerable improvements in the fine-mapping resolution of common variant association signals at several T2D susceptibility loci. These observations highlight the benefits of trans-ethnic GWAS for the discovery and characterization of complex trait loci and emphasize an exciting opportunity to extend insight into the genetic architecture and pathogenesis of human diseases across populations of diverse ancestry