The Bibbulung Gnarneep Project: practical implementation of guidelines on ethics in indigenous health research.

Human rights and ethical principles justify Indigenous control of health research conducted in Indigenous communities, but also emphasise the need for scientific rigour, knowledge and expertise, much of which currently resides with the non-Indigenous community. In 1994, we began development of the Bibbulung Gnarneep Project on Aboriginal maternal and child health in Perth, Western Australia. We describe the process of developing a protocol to ensure ethical conduct of this research through consultation and negotiation between Aboriginal and non-Aboriginal people involved in the project.     

Overseas-trained doctors in Aboriginal and Torres Strait Islander health services: many unanswered questions

Aboriginal and Torres Strait Islander health services are heavily dependent on overseas-trained doctors (OTDs). These OTDs are increasingly from countries with variable English language and educational equivalency compared with locally trained doctors. Aboriginal and Torres Strait Islander health services create particular demands for all doctors, such as negotiating "cultural domains" and acknowledging the contribution of Aboriginal health workers. Little is known about the roles and experience of OTDs in health service provision in Indigenous communities. Barriers to effective research into the experience of OTDs include privacy legislation and a lack of standardised data. Researching the narratives of OTDs in Indigenous health services offers an opportunity to explore the diversity and complexity of the cultural interfaces in health service provision.     

Indigenous health: effective and sustainable health services through continuous quality improvement

The Australian government's Healthy for Life program is supporting capacity development in Indigenous primary care using continuous quality improvement (CQI) techniques. An important influence on the Healthy for Life program has been the ABCD research project. The key features contributing to the success of the project are described. The ABCD research project: uses a CQI approach, with an ongoing cycle of gathering data on how well organisational systems are functioning, and developing and then implementing improvements; is guided by widely accepted principles of community-based research, which emphasise participation; and adheres to the principles and values of Indigenous health research and service delivery. The potential for improving health outcomes in Aboriginal and Torres Strait Islander communities using a CQI approach should be strengthened by clear clinical and managerial leadership, supporting service organisations at the community level, and applying participatory-action principles.     

Practical challenges of conducting research into rheumatic fever in remote Aboriginal communities

Before embarking on an epidemiological study of acute rheumatic fever in remote Aboriginal communities, researchers engaged in the processes of community consultation, consent and household enrollment. Community expectations and time constraints are not necessarily those of the funding bodies, and a considerable investment of time and local engagement was required before the project proceeded with local support. The remoteness of the communities, harsh climate and limited infrastructure made working conditions difficult. Nevertheless, the study was completed and the results are being returned to the local councils and households. The research team continues to maintain its relationship with each study community.     

Ethical approval in developing countries is not optional

When conducting health and medical research it is important to do the research ethically and to apply for prior ethical approval from the relevant authorities. The latter requirement is true for developed countries as well as developing countries. The authors argue that simply applying for research ethics approval from an institutional review board at a university based in a developed country is not enough to start a health research project in a developing country. The paper also suggests a number of reasons why researchers may fail to seek local research ethics permission in developing countries. The authors use a recent paper reporting research conducted in Nepal and published in an international journal as a case study to highlight the importance of being sensitive to local requirements regarding applying for and registering health and medical research.     

Aboriginal incarceration: health and social impacts

Each year up to a quarter of all young Aboriginal men have direct involvement with correctional services, and Aboriginal prisoners currently represent 22% of the total Australian prisoner population. The high rates of repeated short-term incarceration experienced by Aboriginal people in Australia have a multitude of negative health effects for Aboriginal communities and the wider society, while achieving little in terms of increased community safety. Well identified health and social priorities for Aboriginal people affected by incarceration include housing and tenancy support; mental health and wellbeing, including family violence, grief and loss support; substance misuse support; general health services, including hepatitis C management; and social inclusion, including the need for family and community integration, skills development and employment. The post-release period is a crucial time for the provision of integrated health and social services to address these priorities and to break the cycle of incarceration. To achieve significant health gains for Aboriginal people, there is a need to develop a broader collaborative approach to primary health care, incorporating social health and justice perspectives as fundamental components of health care planning. Health and human services have a critical role to play in developing community-based solutions to reduce excessive incarceration rates for Aboriginal people.     

Management of chronic hepatitis B virus infection in remote-dwelling Aboriginals and Torres Strait Islanders: an update for primary healthcare providers

Chronic HBV infection is common in remote Aboriginal and Torres Strait Islander communities, where resources are scarce and patients may have several concurrent illnesses. The management of chronic HBV infection has changed over recent years, with greater application of serological and radiological investigations and new, more acceptable treatments for chronic liver disease, cirrhosis and hepatocellular carcinoma. Optimal follow-up procedures for patients with chronic HBV infection are still being debated, but may not be applicable to Aboriginal and Torres Strait Islander communities where factors such as endemicity, remoteness, frequent comorbidities, shorter life expectancy and cultural differences in health priorities must be taken into consideration. We have defined an algorithm to assist primary care providers caring for patients with chronic HBV infection in Aboriginal and Torres Strait Islander communities. Patients are divided into one of three categories for follow-up and referral based on clinical features, and results of liver enzyme and serological tests.     

Outcome of an interventional program for scabies in an Indigenous community.

OBJECTIVE: To implement an intervention program for reducing the prevalence of scabies in a large Northern Territory Aboriginal community. DESIGN: Prospective, longitudinal screening, intervention and follow-up study. Participants and setting: All children aged 5 years and under in one of the largest Aboriginal communities in the Northern Territory, total population, approximately 2,200 (95% Indigenous). MAIN OUTCOME MEASURES: A decrease in prevalence of scabies, infected scabies and non-scabies pyoderma over seven months. RESULTS: The number of children aged 5 years and under screened intially and at the three follow-up screenings ranged from 201 to 242 (more than 98% of those eligible on each occasion). The prevalences of scabies, infected scabies and non-scabies pyoderma before intervention were 35%, 12% and 11%, respectively. At 6 weeks postintervention these had decreased to 3%, 1% and 4%, respectively; low prevalences were maintained at four and seven months. CONCLUSIONS: This intervention, which was based on community motivation, involvement and control, successfully reduced the prevalence of scabies. Continuing community health education and regular screening will be crucial in controlling scabies. The methods and results of this study may be helpful in developing a coordinated program for all remote Aboriginal communities in the area.     

General practice training in Aboriginal and Torres Strait Islander health

This article reviews the history of general practice vocational training in Aboriginal and Torres Strait Islander health, identifies current initiatives and recommends future approaches based on recent evidence. General practice vocational training in Aboriginal and Torres Strait Islander health requires ongoing support and investment from governments and training and general practice organisations if the gains made to date are to be consolidated and health outcomes are to improve. In particular, investment in sustained and respectful partnerships with Aboriginal and Torres Strait Islander peoples and organisations will continue to provide the groundwork for effective training of general practitioners in this critical health area, and will also play an important role in capacity-building in Aboriginal and Torres Strait Islander communities.     

Infectious disease in Aboriginal infants and children in Western Australia

Over the decade from 1971 to 1980, there was a decline in Western Australia in the number of Aboriginal infants and children admitted to hospital with infections. The most marked change occurred in admissions for gastroenteritis and other infections in the Kimberley region in the far north of the State. Despite this decline, there is still a very wide gap between the rate of admission to hospital for infectious diseases of Aboriginal and that of non-Aboriginal infants and children. The decline reported here is considered to reflect improvements in health status caused by several interrelating factors, including improvement in the general standard of living, housing and hygiene, and the provision of comprehensive, community-based health programmes. Environmental contamination is still a major factor causing ill health in Australian Aboriginal communities.     

Is there an Aboriginal bioethic?

It is well recognised that medicine manifests social and cultural values and that the institution of healthcare cannot be structurally disengaged from the sociopolitical processes that create such values. As with many other indigenous peoples, Aboriginal Australians have a lower heath status than the rest of the community and frequently experience the effects of prejudice and racism in many aspects of their lives. In this paper the authors highlight values and ethical convictions that may be held by Aboriginal peoples in order to explore how health practitioners can engage Aboriginal patients in a manner that is more appropriate. In doing so the authors consider how the ethics, values, and beliefs of the dominant white Australian culture have framed the treatment and delivery of services that Aboriginal people receive, and whether sufficient effort has been made to understand or acknowledge the different ethical predispositions that form the traditions and identity of Aboriginal Australia(ns).     

Health of Aboriginal and Torres Strait Islander children in remote Far North Queensland: findings of the Paediatric Outreach Service

AIM: To describe the pattern of disease and other health problems in children living in remote Far North Queensland (FNQ). DESIGN, SETTING AND PARTICIPANTS: Retrospective review of the FNQ Paediatric Outreach Service's Medical Director database for the period June 2001 to February 2006. Three subpopulations were compared: children from predominantly Aboriginal communities, predominantly Torres Strait Islander communities, and other communities. All children referred to the service during the study period were reviewed. MAIN OUTCOME MEASURES: Number of children seen and common diagnoses. RESULTS: 3562 children were referred during the study period, and a total of 3932 diagnoses were made; 56% of the paediatric population of the Aboriginal communities and 23% of the paediatric population of Torres Strait Islander communities were seen. Of 40 separate diseases/health problems reviewed, the three most common reasons for presentation were chronic suppurative otitis media, suspected child abuse and neglect, and failure to thrive. In the paediatric population of Aboriginal communities, the prevalence of fetal alcohol spectrum disorder was at least 15/1000 (1.5%), and in Torres Strait Islander children, rheumatic heart disease prevalence was at least 6/1000 (0.6%). Rheumatic fever rates were among the highest in Australia. CONCLUSION: Rates of preventable complex and chronic health problems in Aboriginal and Torres Strait Islander children in remote FNQ are alarmingly high. Areas requiring urgent public health intervention include alcohol-related conditions and rheumatic fever.     

Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing: A report from the Strong Heart Study

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.     

Ethical practice in internet research involving vulnerable people: lessons from a self-harm discussion forum study (SharpTalk)

The internet is widely used for health information and support, often by vulnerable people. Internet-based research raises both familiar and new ethical problems for researchers and ethics committees. While guidelines for internet-based research are available, it is unclear to what extent ethics committees use these. Experience of gaining research ethics approval for a UK study (SharpTalk), involving internet-based discussion groups with young people who self-harm and health professionals is described. During ethical review, unsurprisingly, concerns were raised about the vulnerability of potential participants. These were dominated by the issue of anonymity, which also affected participant safety and consent. These ethical problems are discussed, and our solutions, which included: participant usernames specific to the study, a closed website, private messaging facilities, a direct contact email to researchers, information about forum rules displayed on the website, a 'report' button for participants, links to online support, and a discussion room for forum moderators. This experience with SharpTalk suggests that an approach to ethics, which recognises the relational aspects of research with vulnerable people, is particularly useful for internet-based health research. The solutions presented here can act as guidance for researchers developing proposals and for ethics committees reviewing them.     

A multifaceted health-service intervention in remote Aboriginal communities: 3-year follow-up of the impact on diabetes care

OBJECTIVE: To examine the trends in processes of diabetes care and in participant outcomes after an intervention in two remote regions of Australia. DESIGN: Follow-up study over 3 years. SETTING: Seven health centres in the Tiwi Islands and the Katherine West region of the Northern Territory. PARTICIPANTS: 137 Aboriginal people with type 2 diabetes. INTERVENTION: Implementation of a multifaceted trial, including transfer of purchasing and planning responsibility to local health boards, the development and dissemination of clinical guidelines supported by electronic registers, recall and reminder systems and associated staff training, and audit and feedback. MAIN OUTCOME MEASURES: Trends in the proportion of Aboriginal people receiving services in accordance with clinical guidelines and in the proportion for whom specified levels of blood pressure and glycosylated haemoglobin (HbA(1c)) were achieved; health staff perceptions of barriers to effective service delivery. RESULTS: An initial improvement in overall service levels from 40% to 49% was not fully sustained over the 3-year period. The overall proportion of services delivered varied from 22% to 64% between communities and over time. The proportion of participants whose most recent HbA(1c) level was less than 7% improved from 19% to 32%, but there was little change in blood pressure control. Perceived barriers to service delivery included discontinuities in staffing, lack of work-practice support and patients' acceptance of services. CONCLUSIONS: Multifaceted interventions can improve quality of care in this environment, but achieving sustainable, high-quality care in a range of services and local conditions presents particular challenges. Developing and testing strategies for consistent and sustained improvement should be a priority for service providers and researchers.     

Wa! Ningeningma arakba akina da! (Oh! Now I know, that's it!)

Our aim was to disseminate research results about the very high rates of cannabis use in three remote Aboriginal communities in Arnhem Land, Northern Territory, to the study populations. To achieve this we translated prevalence estimates, using local concepts of life stages, numbers and quantities. The reaction of the local community to results presented in this way was characterised by the phrase used when understanding something for the first time: Wa! Ningeningma arakba akina da! ("Oh! Now I know, that's it!"). To successfully disseminate research findings in these communities, it is critical to undertake comprehensive community liaison, to find common conceptual understandings and to build the skills of local Indigenous researchers.     

基于校政协同与医防融合的“全科医学+”医共体的构建与探索

目的 本文旨在探索基层医共体建设与可持续发展的新路径,为医共体的建设提供可复制的参考经验。 方法 通过文献分析、理论研究的方法,结合实地调研、专家论证对问题解析,同时进行面向区域基层的实践,探索构建新型医共体。 结果 对国内部分城市医共体运行现状与发展进行了深入的分析,经过一年多的实践,首次提出并建立了医科大学与政府协同下的以三级医院为区域龙头医院,以省级公共卫生研究机构、乡镇社区卫生服务机构、功能社区紧密联合,以全科医学为抓手的医防融合型“全科医学+”医共体。该医共体以校政协同解决优质医疗资源缺乏和资源合理利用问题;以“五个统一”解决深层次体制机制矛盾问题;以全科医学为抓手推进区域医共体建设,解决基层服务能力不足的问题。通过“全科医学+”为实现普及健康生活、优化健康服务、完善健康保障、建设健康环境、发展健康产业的战略目标探索一条可实施、可持续的改革新路径。 结论 “全科医学+”医共体在多方协同下为医药卫生体制改革提供新思路,为我国其他县级公立医院改革和医共体试点工作提供参考。      

Social and environmental factors in 10 aboriginal communities in the Northern Territory: relationship to hospital admissions of children.

OBJECTIVE: To identify social and environmental differences associated with differences in admission rates of children from 10 rural Aboriginal communities in the Northern Territory. DESIGN: Between March 1986 and December 1987, records of hospital admissions of the cohort of children for 1976-1985 were examined retrospectively; cross-sectional measurements of 74 historical, social and environmental characteristics of each community were collected. SAMPLE: All 1961 children born between 1 January 1976 and 31 December 1985 and still living in the 10 communities. METHOD: Scores on social and environmental factors for each community were generated by factor analysis. Generalised linear interactive modelling was used to investigate the association between these scores and admission rates. RESULTS: Mean admissions per child-year at risk were higher in Central Australian communities (range, 0.41-0.93) than Top End communities (0.26-0.38). Factor I accounted for 30% of the social and environmental differences between communities: communities with a high score on this factor had more houses, fewer shared toilets, more electrical appliances, better personal hygiene and a history of mission administration. High scores on this factor were predictive of lower admission rates and the factor explained most of the differences in admission rates between the Top End and Central Australian communities. Factor VI, correlated with dilapidated dwellings and fewer Aboriginal Health Workers, explained some differences in admission rates between six Top End communities. CONCLUSIONS: Social and environmental factors correlated with the degree of community development are associated with the health of Aboriginal children. Improved development programs should be community-controlled and evaluated to identify the social, educational, behavioural and environmental changes that are most effective in improving health.     

The demise of a planned randomised controlled trial in an urban Aboriginal medical service

To fill a gap in knowledge about the effectiveness of brief intervention for hazardous alcohol use among Indigenous Australians, we attempted to implement a randomised controlled trial in an urban Aboriginal Medical Service (AMS) as a joint AMS-university partnership. Because of low numbers of potential participants being screened, the RCT was abandoned in favour of a two-part "demonstration project". Only 16 clients were recruited for follow-up in six-months, and the trial was terminated. Clinic, patient, Aboriginal health worker, and GP factors, interacting with study design factors, all contributed to our inability to implement the trial as designed. The key points to emerge from the study are that alcohol misuse is a difficult issue to manage in an Indigenous primary health care setting; RCTs involving inevitably complex study protocols may not be acceptable or sufficiently adaptable to make them viable in busy, Indigenous primary health care settings; and "gold-standard" RCT-derived evidence for the effectiveness of many public health interventions in Indigenous primary health care settings may never be available, and decisions about appropriate interventions will often have to be based on qualitative assessment of appropriateness and evidence from other populations and other settings.     

Maternal and childhood nutrition among Aborigines of the Kimberley region

A cross-sectional anthropometric survey of 128 Aboriginal children under five years of age and of 388 Aboriginal girls and women of child-bearing age was undertaken in seven communities in the Kimberley Region of Western Australia. More than 20% of the children were undernourished, three individuals severely so. All but one of those who were undernourished were over 12 months of age. Less than 60% of the female subjects of child-bearing age had a satisfactory nutritional status; one-sixth were undernourished and one-quarter, mostly older women, were overweight. The findings indicate that poor nutrition is widespread among Aboriginal female subjects of child-bearing age. Maternal malnutrition may contribute significantly to unsatisfactory nutrition and health in Aboriginal infants and young children.