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.

Indigenous Genetics and Rare Diseases: Harmony, Diversity and Equity.

Advances in our understanding of genetic and rare diseases are changing the face of healthcare. Crucially, the global community must implement these advances equitably to reduce health disparities, including between Indigenous and non-Indigenous peoples. We take an Australian perspective to illustrate some key areas that are fundamental to the equitable translation of new knowledge for the improved diagnosis of genetic and rare diseases for Indigenous people. Specifically, we focus on inequalities in access to clinical genetics services and the lack of genetic and phenomic reference data to inform diagnoses. We provide examples of ways in which these inequities are being addressed through Australian partnerships to support a harmonious and inclusive approach to ensure that benefits from traditional wisdom, community knowledge and shared experiences are interwoven to support and inform implementation of new knowledge from genomics and precision public health. This will serve to deliver benefits to all of our diverse citizens, including Indigenous populations.

Impact of policy support on uptake of evidence-based continuous quality improvement activities and the quality of care for Indigenous Australians: a comparative case study.

OBJECTIVES: To examine the impact of state/territory policy support on (1) uptake of evidence-based continuous quality improvement (CQI) activities and (2) quality of care for Indigenous Australians. DESIGN: Mixed-method comparative case study methodology, drawing on quality-of-care audit data, documentary evidence of policies and strategies and the experience and insights of stakeholders involved in relevant CQI programmes. We use multilevel linear regression to analyse jurisdictional differences in quality of care. SETTING: Indigenous primary healthcare services across five states/territories of Australia. PARTICIPANTS: 175 Indigenous primary healthcare services. INTERVENTIONS: A range of national and state/territory policy and infrastructure initiatives to support CQI, including support for applied research. PRIMARY AND SECONDARY OUTCOME MEASURES: (i) Trends in the consistent uptake of evidence-based CQI tools available through a research-based CQI initiative (the Audit and Best Practice in Chronic Disease programme) and (ii) quality of care (as reflected in adherence to best practice guidelines). RESULTS: Progressive uptake of evidence-based CQI activities and steady improvements or maintenance of high-quality care occurred where there was long-term policy and infrastructure support for CQI. Where support was provided but not sustained there was a rapid rise and subsequent fall in relevant CQI activities. CONCLUSIONS: Health authorities should ensure consistent and sustained policy and infrastructure support for CQI to enable wide-scale and ongoing improvement in quality of care and, subsequently, health outcomes. It is not sufficient for improvement initiatives to rely on local service managers and clinicians, as their efforts are strongly mediated by higher system-level influences.

The collective impact of rare diseases in Western Australia: an estimate using a population-based cohort.

PURPOSE: It has been argued that rare diseases should be recognized as a public health priority. However, there is a shortage of epidemiological data describing the true burden of rare diseases. This study investigated hospital service use to provide a better understanding of the collective health and economic impacts of rare diseases. METHODS: Novel methodology was developed using a carefully constructed set of diagnostic codes, a selection of rare disease cohorts from hospital administrative data, and advanced data-linkage technologies. Outcomes included health-service use and hospital admission costs. RESULTS: In 2010, cohort members who were alive represented approximately 2.0% of the Western Australian population. The cohort accounted for 4.6% of people discharged from hospital and 9.9% of hospital discharges, and it had a greater average length of stay than the general population. The total cost of hospital discharges for the cohort represented 10.5% of 2010 state inpatient hospital costs. CONCLUSIONS: This population-based cohort study provides strong new evidence of a marked disparity between the proportion of the population with rare diseases and their combined health-system costs. The methodology will inform future rare-disease studies, and the evidence will guide government strategies for managing the service needs of people living with rare diseases.Genet Med advance online publication 22 September 2016.

Variation in quality of preventive care for well adults in Indigenous community health centres in Australia.

BACKGROUND: Early onset and high prevalence of chronic disease among Indigenous Australians call for action on prevention. However, there is deficiency of information on the extent to which preventive services are delivered in Indigenous communities. This study examined the variation in quality of preventive care for well adults attending Indigenous community health centres in Australia. METHODS: During 2005-2009, clinical audits were conducted on a random sample (stratified by age and sex) of records of adults with no known chronic disease in 62 Indigenous community health centres in four Australian States/Territories (sample size 1839). MAIN OUTCOME MEASURES: i) adherence to delivery of guideline-scheduled services within the previous 24 months, including basic measurements, laboratory investigations, oral health checks, and brief intervention on lifestyle modification; and ii) follow-up of abnormal findings. RESULTS: Overall delivery of guideline-scheduled preventive services varied widely between health centres (range 5-74%). Documentation of abnormal blood pressure reading ([greater than or equal to]140/90 mmHg), proteinuria and abnormal blood glucose ([greater than or equal to]5.5 mmol/L) was found to range between 0 and > 90% at the health centre level. A similarly wide range was found between health centres for documented follow up check/test or management plan for people documented to have an abnormal clinical finding. Health centre level characteristics explained 13-47% of variation in documented preventive care, and the remaining variation was explained by client level characteristics. CONCLUSIONS: There is substantial room to improve preventive care for well adults in Indigenous primary care settings. Understanding of health centre and client level factors affecting variation in the care should assist clinicians, managers and policy makers to develop strategies to improve quality of preventive care in Indigenous communities.

Delivery of maternal health care in Indigenous primary care services: baseline data for an ongoing quality improvement initiative.

BACKGROUND: Australia's Aboriginal and Torres Strait Islander (Indigenous) populations have disproportionately high rates of adverse perinatal outcomes relative to other Australians. Poorer access to good quality maternal health care is a key driver of this disparity. The aim of this study was to describe patterns of delivery of maternity care and service gaps in primary care services in Australian Indigenous communities. METHODS: We undertook a cross-sectional baseline audit for a quality improvement intervention. Medical records of 535 women from 34 Indigenous community health centres in five regions (Top End of Northern Territory 13, Central Australia 2, Far West New South Wales 6, Western Australia 9, and North Queensland 4) were audited. The main outcome measures included: adherence to recommended protocols and procedures in the antenatal and postnatal periods including: clinical, laboratory and ultrasound investigations; screening for gestational diabetes and Group B Streptococcus; brief intervention/advice on health-related behaviours and risks; and follow up of identified health problems. RESULTS: The proportion of women presenting for their first antenatal visit in the first trimester ranged from 34% to 49% between regions; consequently, documentation of care early in pregnancy was poor. Overall, documentation of routine antenatal investigations and brief interventions/advice regarding health behaviours varied, and generally indicated that these services were underutilised. For example, 46% of known smokers received smoking cessation advice/counselling; 52% of all women received antenatal education and 51% had investigation for gestational diabetes. Overall, there was relatively good documentation of follow up of identified problems related to hypertension or diabetes, with over 70% of identified women being referred to a GP/Obstetrician. CONCLUSION: Participating services had both strengths and weaknesses in the delivery of maternal health care. Increasing access to evidence-based screening and health information (most notably around smoking cessation) were consistently identified as opportunities for improvement across services.

Response to pandemic (H1N1) 2009 influenza in Australia - lessons from a State health department perspective.

This article reviews the lessons that can be learned by the health sector, in particular, and the public sector, more generally, from the governmental response to pandemic (H1N1) 2009 influenza A (pH1N1) in Australia during 2009. It covers the period from the emergence of the epidemic to the release of the vaccine, and describes a range of impacts on the Western Australian health system, the government sector and the community. There are three main themes considered from a State government agency perspective: how decisions were influenced by prior planning; how the decision making and communication processes were intimately linked; and the interdependent roles of States and the Commonwealth Government in national programs. We conclude that: (a) communications were generally effective, but need to be improved and better coordinated between the Australian Government, States and general practice; (b) decision making was appropriately flexible, but there needs to be better alignment with expert advice, and consideration of the need for a national disease control agency in Australia; and (c) national funding arrangements need to fit with the model of state-based service delivery and to support critical workforce needs for surge capacity, as well as stockpile and infrastructure requirements.

Rationale and design of the Kanyini guidelines adherence with the polypill (Kanyini-GAP) study: a randomised controlled trial of a polypill-based strategy amongst indigenous and non indigenous people at high cardiovascular risk.

BACKGROUND: The Kanyini Guidelines Adherence with the Polypill (Kanyini-GAP) Study aims to examine whether a polypill-based strategy (using a single capsule containing aspirin, a statin and two blood pressure-lowering agents) amongst Indigenous and non-Indigenous people at high risk of experiencing a cardiovascular event will improve adherence to guideline-indicated therapies, and lower blood pressure and cholesterol levels. METHODS/DESIGN: The study is an open, randomised, controlled, multi-centre trial involving 1000 participants at high risk of cardiovascular events recruited from mainstream general practices and Aboriginal Medical Services, followed for an average of 18 months. The participants will be randomised to one of two versions of the polypill, the version chosen by the treating health professional according to clinical features of the patient, or to usual care. The primary study outcomes will be changes, from baseline measures, in serum cholesterol and systolic blood pressure and self-reported current use of aspirin, a statin and at least two blood pressure lowering agents. Secondary study outcomes include cardiovascular events, renal outcomes, self-reported barriers to indicated therapy, prescription of indicated therapy, occurrence of serious adverse events and changes in quality-of-life. The trial will be supplemented by formal economic and process evaluations. DISCUSSION: The Kanyini-GAP trial will provide new evidence as to whether or not a polypill-based strategy improves adherence to effective cardiovascular medications amongst individuals in whom these treatments are indicated. TRIAL REGISTRATION: This trial is registered with the Australian New Zealand Clinical Trial Registry ACTRN126080005833347.

Study protocol: national research partnership to improve primary health care performance and outcomes for Indigenous peoples.

BACKGROUND: Strengthening primary health care is critical to reducing health inequity between Indigenous and non-Indigenous Australians. The Audit and Best practice for Chronic Disease Extension (ABCDE) project has facilitated the implementation of modern Continuous Quality Improvement (CQI) approaches in Indigenous community health care centres across Australia. The project demonstrated improvements in health centre systems, delivery of primary care services and in patient intermediate outcomes. It has also highlighted substantial variation in quality of care. Through a partnership between academic researchers, service providers and policy makers, we are now implementing a study which aims to 1) explore the factors associated with variation in clinical performance; 2) examine specific strategies that have been effective in improving primary care clinical performance; and 3) work with health service staff, management and policy makers to enhance the effective implementation of successful strategies. METHODS/DESIGN: The study will be conducted in Indigenous community health centres from at least six States/Territories (Northern Territory, Western Australia, New South Wales, South Australia, Queensland and Victoria) over a five year period. A research hub will be established in each region to support collection and reporting of quantitative and qualitative clinical and health centre system performance data, to investigate factors affecting variation in quality of care and to facilitate effective translation of research evidence into policy and practice. The project is supported by a web-based information system, providing automated analysis and reporting of clinical care performance to health centre staff and management. DISCUSSION: By linking researchers directly to users of research (service providers, managers and policy makers), the partnership is well placed to generate new knowledge on effective strategies for improving the quality of primary health care and fostering effective and efficient exchange and use of data and information among service providers and policy makers to achieve evidence-based resource allocation, service planning, system development, and improvements of service delivery and Indigenous health outcomes.

Study protocol: Audit and Best Practice for Chronic Disease Extension (ABCDE) Project.

BACKGROUND: A growing body of international literature points to the importance of a system approach to improve the quality of care in primary health care settings. Continuous Quality Improvement (CQI) concepts and techniques provide a theoretically coherent and practical way for primary care organisations to identify, address, and overcome the barriers to improvements. The Audit and Best Practice for Chronic Disease (ABCD) study, a CQI-based quality improvement project conducted in Australia's Northern Territory, has demonstrated significant improvements in primary care service systems, in the quality of clinical service delivery and in patient outcomes related to chronic illness care. The aims of the extension phase of this study are to examine factors that influence uptake and sustainability of this type of CQI activity in a variety of Indigenous primary health care organisations in Australia, and to assess the impact of collaborative CQI approaches on prevention and management of chronic illness and health outcomes in Indigenous communities. METHODS/DESIGN: The study will be conducted in 40-50 Indigenous community health centres from 4 States/Territories (Northern Territory, Western Australia, New South Wales and Queensland) over a five year period. The project will adopt a participatory, quality improvement approach that features annual cycles of: 1) organisational system assessment and audits of clinical records; 2) feedback to and interpretation of results with participating health centre staff; 3) action planning and goal setting by health centre staff to achieve system changes; and 4) implementation of strategies for change. System assessment will be carried out using a System Assessment Tool and in-depth interviews of key informants. Clinical audit tools include two essential tools that focus on diabetes care audit and preventive service audit, and several optional tools focusing on audits of hypertension, heart disease, renal disease, primary mental health care and health promotion. The project will be carried out in a form of collaborative characterised by a sequence of annual learning cycles with action periods for CQI activities between each learning cycle. Key outcome measures include uptake and integration of CQI activities into routine service activity, state of system development, delivery of evidence-based services, intermediate patient outcomes (e.g. blood pressure and glucose control), and health outcomes (complications, hospitalisations and mortality). CONCLUSION: The ABCD Extension project will contribute directly to the evidence base on effectiveness of collaborative CQI approaches on prevention and management of chronic disease in Australia's Indigenous communities, and to inform the operational and policy environments that are required to incorporate CQI activities into routine practice.

Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory - use of the Chronic Care Model.

BACKGROUND: Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people. METHODS: This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members. RESULTS: Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence - strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages - facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management - promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support - facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design - strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems - facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support. CONCLUSION: Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.

Socioeconomic status and diabetes among urban Indigenous Australians aged 15-64 years in the DRUID study.

BACKGROUND: Diabetes is associated with lower socioeconomic status (SES) in developed countries, but the reverse is true in developing countries. Little is known about the relationship between SES and diabetes among Indigenous populations in developed countries. DESIGN: We examined the relationship between measures of SES and the prevalence of diabetes in the DRUID Study, a cross-sectional study of urban Indigenous Australian volunteers in the Darwin region. RESULTS: Among 777 participants aged 15-64 years included in the analysis, 17.1% had diabetes, ranging from 2.0% among those aged 15-24 years to 50.8% of those aged 55-64 years. After adjusting for age and sex, diabetes was significantly more common among those of lower SES, whether measured by housing tenure, household income, or employment status. For example, compared with those living in a household that was owned/being purchased by its occupants, the relative odds of diabetes was 2.66 (95% confidence interval 1.71-4.15) for those living in rented/other accommodation. The inverse relationship between SES and diabetes was present even among those who had not previously been diagnosed with diabetes. The relationship between disadvantage and diabetes was not mediated to any great degree by obesity. CONCLUSIONS: The relationship between SES and diabetes among Indigenous Australians in this study is consistent with the patterns observed in developed countries, rather than those in some developing countries.

Delivery of preventive health services to Indigenous adults: response to a systems-oriented primary care quality improvement intervention.

OBJECTIVE: To describe changes in delivery of preventive services among adults in Aboriginal communities that occurred in association with a systems-oriented intervention. DESIGN, SETTING AND PARTICIPANTS: A quality improvement intervention with a 2-year follow-up was undertaken at 12 Aboriginal community health centres in the Northern Territory between January 2002 and December 2005. The study involved 360 well adults aged 16-49 years who had no known diagnosis of chronic disease. INTERVENTION: Two annual cycles of assessment, feedback workshops, action planning, and implementation of system changes. Assessment included a structured review of health service systems and an audit of clinical records. MAIN OUTCOME MEASURES: Adherence to guideline-scheduled preventive services including taking basic measurements, laboratory investigations, lifestyle counselling and pneumococcal vaccination. RESULTS: Of 12 preventive services measured, delivery of four services showed improvement over the study period: counselling on diet increased from 3% to 8% (P = 0.018); counselling on physical activity from 2% to 8% (P = 0.006); counselling on smoking from 2% to 11% (P = 0.003); and counselling on alcohol from 2% to 10% (P = 0.007). There was no improvement in important measures such as monitoring of waist circumference, blood pressure and blood glucose level, and delivery of pneumococcal vaccination. CONCLUSION: Our systems-oriented intervention was associated with some improvement in counselling activities, but no significant improvement in delivery of other preventive services. The main reason may be that implementation focused more on chronic illness management than preventive services for generally well adults.

Study protocol--diabetes and related conditions in urban indigenous people in the Darwin, Australia region: aims, methods and participation in the DRUID Study.

BACKGROUND: Diabetes mellitus is a serious and increasing health problem in Australia and is a designated national health priority. Diabetes and related conditions represent an even greater health burden among Indigenous Australians (Aborigines and Torres Strait Islanders), but there are critical gaps in knowledge relating to the incidence and prevalence, aetiology, and prevention of diabetes in this group, including a lack of information on the burden of disease among Indigenous people in urban areas. The DRUID Study (Diabetes and Related conditions in Urban Indigenous people in the Darwin region) was designed to address this knowledge gap. METHODS/DESIGN: The study was conducted in a specified geographic area in and around Darwin, Australia. Eligible participants underwent a health examination, including collection of blood and urine samples, clinical and anthropometric measurements, and administration of questionnaires, with an additional assessment for people with diabetes. The study was designed to incorporate local Indigenous leadership, facilitate community engagement, and provide employment and training opportunities for local Indigenous people. A variety of recruitment methods were used. A total of 1,004 eligible people gave consent and provided at least one measurement. When compared with census data for the Indigenous population living in the study area, there was a marked under-representation of males, but no substantial differences in age, place of residence, Indigenous group, or household income. Early participants were more likely than later participants to have previously diagnosed diabetes. DISCUSSION: Despite lower than anticipated recruitment, this is, to our knowledge, the largest study ever conducted on the health of Indigenous Australians living in urban areas, a group which comprises the majority of Australia's Indigenous population but about whose health and wellbeing relatively little is known. The study is well-placed to provide new information that can be used by policy makers and service providers to improve the delivery of services and programs that affect the health of Indigenous people. It also represents a valuable opportunity to establish an urban Indigenous cohort study, provided participants can be followed successfully over time.

The Northern Territory preventable chronic disease strategy--promoting an integrated and life course approach to chronic disease in Australia.

The need for an integrated and life course approach to the prevention and control of chronic diseases is increasingly being recognised. This paper describes the development of the Northern Territory Preventable Chronic Disease Strategy (PCDS), the strategic framework and evidence base, the design of implementation and monitoring phases, and early outcomes. The PCDS is premised on the belief that the major chronic diseases, and their common underlying risk factors, are potentially preventable. The structural challenges to larger jurisdictions taking such an integrated approach are undoubtedly larger, but the benefits are potentially great. Continuing with a series of vertical programs aimed at each single noncommunicable disease will not deliver the desired national health outcomes.