Why surveys are 'very hard': exploring challenges and insights for collection of authentic patient experience information with speakers of Australian First Nations languages.

INTRODUCTION: Health services collect patient experience data to monitor, evaluate and improve services and subsequently health outcomes. Obtaining authentic patient experience information to inform improvements relies on the quality of data collection processes and the responsiveness of these processes to the cultural and linguistic needs of diverse populations. This study explores the challenges and considerations in collecting authentic patient experience information through survey methods with Australians who primarily speak First Nations languages. METHODS: First Nations language experts, interpreters, health staff and researchers with expertise in intercultural communication engaged in an iterative process of critical review of two survey tools using qualitative methods. These included a collaborative process of repeated translation and back translation of survey items and collaborative analysis of video-recorded trial administration of surveys with languages experts (who were also receiving dialysis treatment) and survey administrators. All research activities were audio- or video-recorded, and data from all sources were translated, transcribed and inductively analysed to identify key elements influencing acceptability and relevance of both survey process and items as well as translatability. RESULTS: Serious challenges in achieving equivalence of meaning between English and translated versions of survey items were pervasive. Translatability of original survey items was extensively compromised by the use of metaphors specific to the cultural context within which surveys were developed, English words that are familiar but used with different meaning, English terms with no equivalent in First Nations languages and grammatical discordance between languages. Discordance between survey methods and First Nations cultural protocols and preferences for seeking and sharing information was also important: the lack of opportunity to share the 'full story', discomfort with direct questions and communication protocols that preclude negative or critical responses constrained the authenticity of the information obtained through survey methods. These limitations have serious implications for the quality of information collected and result in frustration and distress for those engaging with the survey. CONCLUSION: Profound implications for the acceptability of a survey tool as well as data quality arise from differences between First Nations cultural and communication contexts and the cultural context within which survey methods have evolved. When data collection processes are not linguistically and culturally congruent there is a risk that patient experience data are inaccurate, miss what is important to First Nations patients and have limited utility for informing relevant healthcare improvement. Engagement of First Nations cultural and language experts is essential in all stages of development, implementation and evaluation of culturally safe and effective approaches to support speakers of First Nations languages to share their experiences of health care and influence change.

Quantitative evaluation of an outreach case management model of care for urban Aboriginal and Torres Strait Islander adults living with complex chronic disease: a longitudinal study.

BACKGROUND: Chronic diseases are the leading contributor to the excess morbidity and mortality burden experienced by Aboriginal and Torres Strait Islander (hereafter, respectfully, Indigenous) people, compared to their non-Indigenous counterparts. The Home-based Outreach case Management of chronic disease Exploratory (HOME) Study provided person-centred, multidisciplinary care for Indigenous people with chronic disease. This model of care, aligned to Indigenous peoples' conceptions of health and wellbeing, was integrated within an urban Indigenous primary health care service. We aimed to determine the impact of this model of care on participants' health and wellbeing at 12 months. METHODS: HOME Study participants were Indigenous, regular patients of the primary health care service, with a diagnosis of at least one chronic disease, and complex health and social care needs. Data were collected directly from participants and from their medical records at baseline, and 3, 6 and 12 months thereafter. Variables included self-rated health status, depression, utilisation of health services, and key clinical outcomes. Participants' baseline characteristics were described using frequencies and percentages. Generalized estimating equation (GEE) models were employed to evaluate participant attrition and changes in outcome measures over time. RESULTS: 60 participants were enrolled into the study and 37 (62%) completed the 12-month assessment. After receiving outreach case management for 12 months, 73% of participants had good, very good or excellent self-rated health status compared with 33% at baseline (p < 0.001) and 19% of participants had depression compared with 44% at baseline (p = 0.03). Significant increases in appointments with allied health professionals (p < 0.001) and medical specialists other than general practitioners (p = 0.001) were observed at 12-months compared with baseline rates. Mean systolic blood pressure decreased over time (p = 0.02), but there were no significant changes in mean HbA1c, body mass index, or diastolic blood pressure. CONCLUSIONS: The HOME Study model of care was predicated on a holistic conception of health and aimed to address participants' health and social care needs. The positive changes in self-rated health and rates of depression evinced that this aim was met, and that participants received the necessary care to support and improve their health and wellbeing.

Economic and quality of care evaluation of dialysis service models in remote Australia: protocol for a mixed methods study.

BACKGROUND: Australia's Northern Territory (NT) has the country's highest incidence and prevalence of kidney disease. Indigenous people from remote areas suffer the heaviest disease burden. Concerns regarding cost and sustainability limit the provision of dialysis treatments in remote areas and most Indigenous people requiring dialysis relocate to urban areas. However, this dislocation of people from their family, community and support networks may prove more costly when the broader health, societal and economic consequences for the individual, family and whole of government are considered. METHODS: The Dialysis Models of Care Study is a large cross organisation mixed methods study. It includes a retrospective (2000-2014) longitudinal data linkage study of two NT cohorts: Renal Cohort 1- comprising approximately 2000 adults who received dialysis and Renal Cohort 2- comprising approximately 400 children of those adults. Linkage of administrative data sets from the Australian and New Zealand Dialysis and Transplant Registry, NT Departments of Health, Housing and Education by a specialist third party (SA/NT Datalink) will enable extraction of activity, financial and outcome data. Interviews with patients, clinicians and service providers, using a snowball technique, will canvass relevant issues and assist in determining the full costs and impacts of the five most used dialysis Models of Care. DISCUSSION: The study uses a mixed methods approach to investigate the quantitative and qualitative dimensions of the full costs and outcomes associated with the choice of particular dialysis models of care for any given patient. The study includes a large data linkage component that for the first time links health, housing and education data to fully analyse and evaluate the impact on patients, their families and the broader community, resulting from the relocation of people for treatment. The study will generate a large amount of activity, financial and qualitative data that will investigate health costs less directly related to dialysis treatment, costs to government such as housing and/or education and the health, social and economic outcomes experienced by patients. This approach fills an evidence gap critical to health service planners.

Facilitating engagement through strong relationships between primary healthcare and Aboriginal and Torres Strait Islander peoples.

OBJECTIVE: Given the high prevalence of chronic disease, it is of concern that access to and sustained engagement with primary healthcare services by Aboriginal and Torres Strait Islander Australians is often far lower than would be expected. This study sought to explore ways in which relationships can support sustained engagement with healthcare services. METHODS: Semi-structured interviews were conducted with 126 Aboriginal and Torres Strait Islander participants with and without chronic disease and 97 Aboriginal and Torres Strait Islander and non-Indigenous healthcare providers, healthcare service managers or administrative staff. RESULTS: Our findings indicate that when faced with acute health issues, Aboriginal and Torres Strait Islander participants did prioritise care, provided that the service was both physically and emotionally welcoming. Trustworthiness of healthcare providers and strong relationships with patients were the most important factors for encouraging sustained engagement overtime. CONCLUSIONS: Responsibility for sustaining relationships does not rest solely with Aboriginal and Torres Strait Islander patients. Rather, healthcare providers need to commit to the process of building and maintaining relationships. IMPLICATIONS: First and foremost healthcare providers should take time to establish and then maintain relationships. Healthcare services can also contribute by ensuring facilities are welcoming for Aboriginal and Torres Strait Islander peoples.

Investigating the feasibility, acceptability and appropriateness of outreach case management in an urban Aboriginal and Torres Strait Islander primary health care service: a mixed methods exploratory study.

BACKGROUND: The disparities in health and life expectancy of Aboriginal and Torres Strait Islander peoples compared to non-Indigenous Australians are well documented. Chronic diseases are a leading contributor to these disparities. We aimed to determine the feasibility, acceptability and appropriateness of a case management approach to chronic disease care integrated within an urban Aboriginal and Torres Strait Islander primary health care service. METHODS: The Home-based, Outreach case Management of chronic disease Exploratory (HOME) Study provided holistic, patient centred multidisciplinary care for Aboriginal and Torres Strait Islander people with chronic disease. A developmental evaluation approach supported the implementation and ongoing adaptations in the delivery of the model of care, and ensured its alignment with Aboriginal and Torres Strait Islander peoples' understandings of, and approaches to, health and wellbeing. In-depth, semi-structured interviews were conducted with nine patient participants (one interview also included a participant's spouse) and 15 health service staff and key themes were identified through an iterative reflective process. Quantitative data were collected directly from patient participants and from their medical records at baseline, 3 and 6 months. Patient participants' baseline characteristics were described using frequencies and percentages. Attrition and patterns of missing values over time were evaluated using binomial generalized estimating equation (GEE) models and mean differences in key clinical outcomes were determined using normal GEE models. RESULTS: Forty-one patients were recruited and nine withdrew over the 6 month period. There was no evidence of differential attrition. All participants (patients and health service staff) were very positive about the model of care. Patient participants became more involved in their health care, depression rates significantly decreased (p = 0.03), and significant improvements in systolic blood pressure (p < 0.001) and diabetes control (p = 0.05) were achieved. CONCLUSIONS: The exploratory nature of our study preclude any definitive statements about the effectiveness of our model of care. However, staff and patients' high levels of satisfaction and improvements in the health and wellbeing of patients are promising and suggest its feasibility, acceptability and appropriateness. Further research is required to determine its efficacy, effectiveness and cost-effectiveness in improving the quality of life and quality of care for Aboriginal and Torres Strait Islander peoples living with chronic disease.

A pragmatic randomized trial of a polypill-based strategy to improve use of indicated preventive treatments in people at high cardiovascular disease risk.

BACKGROUND: Most individuals at high cardiovascular disease (CVD) risk worldwide do not receive any or optimal preventive drugs. We aimed to determine whether fixed dose combinations of generic drugs ('polypills') would promote use of such medications. METHODS: We conducted a randomized, open-label trial involving 623 participants from Australian general practices. Participants had established CVD or an estimated five-year CVD risk of ≥15%, with indications for antiplatelet, statin and ≥2 blood pressure lowering drugs ('combination treatment'). Participants randomized to the 'polypill-based strategy' received a polypill containing aspirin 75 mg, simvastatin 40 mg, lisinopril 10 mg and either atenolol 50 mg or hydrochlorothiazide 12.5 mg. Participants randomized to 'usual care' continued with separate medications and doses as prescribed by their doctor. Primary outcomes were self-reported combination treatment use, systolic blood pressure and total cholesterol. RESULTS: After a median of 18 months, the polypill-based strategy was associated with greater use of combination treatment (70% vs. 47%; relative risk 1.49, (95% confidence interval (CI) 1.30 to 1.72) p < 0.0001; number needed to treat = 4.4 (3.3 to 6.6)) without differences in systolic blood pressure (-1.5 mmHg (95% CI -4.0 to 1.0) p = 0.24) or total cholesterol (0.08 mmol/l (95% CI -0.06 to 0.22) p = 0.26). At study end, 17% and 67% of participants in polypill and usual care groups, respectively, were taking atorvastatin or rosuvastatin. CONCLUSION: Provision of a polypill improved self-reported use of indicated preventive treatments. The lack of differences in blood pressure and cholesterol may reflect limited study power, although for cholesterol, improved statin use in the polypill group counter-balanced use of more potent statins with usual care.

The Grog Mob: lessons from an evaluation of a multi-disciplinary alcohol intervention for Aboriginal clients.

OBJECTIVES: To evaluate a 12-month trial of an evidence-based non-residential treatment program for Indigenous clients with alcohol problems, offering three streams of care: pharmacotherapy, psychological and social support. METHODS: Process evaluation of program implementation; outcome evaluation of client outcomes. IMPLEMENTATION: despite constraints of time and remoteness, the trial demonstrated the feasibility of implementing such a program. The medical stream generated fewer pharmacotherapy prescriptions than expected. The most active stream was the psychological therapy stream. OUTCOMES: between March 2008 and April 2009, 129 clients were referred to the program, of whom 49 consented to have de-identified data used for the evaluation. Of these, 19 clients received one or more streams of care, 15 of whom (78.9%) subsequently stopped or reduced drinking. However, among the remaining 30 consenting clients who had not received an intervention, 70.0% also reported stopping or reducing drinking. The evidence of program effectiveness is therefore equivocal and evaluation over a longer period is required. CONCLUSION AND IMPLICATIONS: The trial demonstrated the viability of, and demand for, evidence-based non-residential treatment for Indigenous clients with alcohol problems. Reasons behind an apparent reluctance among GPs to prescribe pharmacotherapy for Indigenous clients, and steps to overcome this, need further attention.

Understanding uptake of continuous quality improvement in Indigenous primary health care: lessons from a multi-site case study of the Audit and Best Practice for Chronic Disease project.

BACKGROUND: Experimentation with continuous quality improvement (CQI) processes is well underway in Indigenous Australian primary health care. To date, little research into how health organizations take up, support, and embed these complex innovations is available on which services can draw to inform implementation. In this paper, we examine the practices and processes in the policy and organisational contexts, and aim to explore the ways in which they interact to support and/or hinder services' participation in a large scale Indigenous primary health care CQI program. METHODS: We took a theory-driven approach, drawing on literature on the theory and effectiveness of CQI systems and the Greenhalgh diffusion of innovation framework. Data included routinely collected regional and service profile data; uptake of tools and progress through the first CQI cycle, and data collected quarterly from hub coordinators on their perceptions of barriers and enablers. A total of 48 interviews were also conducted with key people involved in the development, dissemination, and implementation of the Audit and Best Practice for Chronic Disease (ABCD) project. We compiled the various data, conducted thematic analyses, and developed an in-depth narrative account of the processes of uptake and diffusion into services. RESULTS: Uptake of CQI was a complex and messy process that happened in fits and starts, was often characterised by conflicts and tensions, and was iterative, reactive, and transformational. Despite initial enthusiasm, the mixed successes during the first cycle were associated with the interaction of features of the environment, the service, the quality improvement process, and the stakeholders, which operated to produce a set of circumstances that either inhibited or enabled the process of change. Organisations had different levels of capacity to mobilize resources that could shift the balance toward supporting implementation. Different forms of leadership and organisational linkages were critical to success. The Greenhalgh framework provided a useful starting point for investigation, but we believe it is more a descriptive than explanatory model. As such, it has limitations in the extent to which it could assist us in understanding the interactions of the practices and processes that we observed at different levels of the system. SUMMARY: Taking up CQI involved engaging multiple stakeholders in new relationships that could support services to construct shared meaning and purpose, operationalise key concepts and tools, and develop and embed new practices into services systems and routines. Promoting quality improvement requires a system approach and organization-wide commitment. At the organization level, a formal high-level mandate, leadership at all levels, and resources to support implementation are needed. At the broader system level, governance arrangements that can fulfil a number of policy objectives related to articulating the linkages between CQI and other aspects of the regulatory, financing, and performance frameworks within the health system would help define a role and vision for quality improvement.

Aboriginal health workers and diabetes care in remote community health centres: a mixed method analysis.

OBJECTIVE: To assess the effect of employing Aboriginal health workers (AHWs) on delivery of diabetes care in remote community health centres, and to identify barriers related to AHWs' involvement in diabetes and other chronic illness care. DESIGN, SETTING AND PARTICIPANTS: Three-year follow-up study of 137 Aboriginal people with type 2 diabetes in seven remote community health centres in the Northern Territory. MAIN OUTCOME MEASURES: Delivery of guideline-scheduled diabetes services; intermediate outcomes (glycated haemoglobin [HbA(1c)] and blood pressure levels); number and sex of AHWs at health centres over time; barriers to AHWs' involvement in chronic illness care. RESULTS: There was a positive relationship between the number of AHWs per 1000 residents and delivery of guideline-scheduled diabetes services (but not intermediate health outcomes). Presence of male AHWs was associated with higher adherence to the guidelines. Barriers to AHWs' involvement in chronic illness care included inadequate training, lack of clear role divisions, lack of stable relationships with non-Aboriginal staff, and high demands for acute care. CONCLUSIONS: Employing AHWs is independently associated with improved diabetes care in remote communities. AHWs have potentially important roles to play in chronic illness care, and service managers need to clearly define and support these roles.

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.

Preventive medical care in remote Aboriginal communities in the Northern Territory: a follow-up study of the impact of clinical guidelines, computerised recall and reminder systems, and audit and feedback.

BACKGROUND: Interventions to improve delivery of preventive medical services have been shown to be effective in North America and the UK. However, there are few studies of the extent to which the impact of such interventions has been sustained, or of the impact of such interventions in disadvantaged populations or remote settings. This paper describes the trends in delivery of preventive medical services following a multifaceted intervention in remote community health centres in the Northern Territory of Australia. METHODS: The intervention comprised the development and dissemination of best practice guidelines supported by an electronic client register, recall and reminder systems and associated staff training, and audit and feedback. Clinical records in seven community health centres were audited at regular intervals against best practice guidelines over a period of three years, with feedback of audit findings to health centre staff and management. RESULTS: Levels of service delivery varied between services and between communities. There was an initial improvement in service levels for most services following the intervention, but improvements were in general not fully sustained over the three year period. CONCLUSIONS: Improvements in service delivery are consistent with the international experience, although baseline and follow-up levels are in many cases higher than reported for comparable studies in North America and the UK. Sustainability of improvements may be achieved by institutionalisation of relevant work practices and enhanced health centre capacity.