Output-orientated policy engagement: a model for advancing the use of epidemiological evidence in health policy.

BACKGROUND: Use of epidemiological research in policy and practice is suboptimal, contributing to significant preventable morbidity and mortality. Barriers to the use of research evidence in policy include lack of research-policy engagement, lack of policy-relevant research, differences in policymaker and researcher practice norms, time constraints, difficulties in coordination, and divergent languages and reward systems. APPROACH AND OUTCOMES: In order to increase policy-relevant research and research uptake, we developed the output-orientated policy engagement (OOPE) model, in Australia. It integrates a foundational approach to engagement with cycles of specific activity focused around selected research outputs. Foundational elements include measures to increase recognition and valuing of policymaker expertise, emphasis on policy uptake, policy awareness of the research group's work, regular policy engagement and policy-relevant capacity-building. Specific activities include (i) identification of an "output"-usually at draft stage-and program of work which are likely to be of interest to policymakers; (ii) initial engagement focusing on sharing "preview" evidence from this output, with an invitation to provide input into this and to advise on the broader program of work; and (iii) if there is sufficient interest, formation of a researcher-policy-maker partnership to shape and release the output, as well as inform the program of work. This cycle is repeated as the relationship continues and is deepened. As well as supporting policy-informed evidence generation and research-aware policymakers, the output-orientated model has been found to be beneficial in fostering the following: a pragmatic starting place for researchers, in often large and complex policy environments; purposeful and specific engagement, encouraging shared expectations; non-transactional engagement around common evidence needs, whereby researchers are not meeting with policymakers with the expectation of receiving funding; built-in translation; time and resource efficiency; relationship-building; mutual learning; policy-invested researchers and research-invested policy-makers; and tangible policy impacts. A case study outlines how the output-orientated approach supported researcher-policymaker collaboration to generate new evidence regarding Aboriginal and Torres Strait Islander cardiovascular disease risk and to apply this to national guidelines. CONCLUSION: Output-orientated policy engagement provides a potentially useful pragmatic model to catalyse and support partnerships between researchers and policymakers, to increase the policy-relevance and application of epidemiological evidence.

Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

A national profile of Aboriginal and Torres Strait Islander Health Workers, 2006-2016.

OBJECTIVE: To undertake a descriptive analysis of the Aboriginal and Torres Strait Islander Health Worker workforce to quantify the changes from 2006-2016. METHOD: We analysed data on Indigenous Health Workers from three waves of Australian Census: 2006, 2011 and 2016. We described the workforce by gender, age and state/territory. RESULTS: There has been overall growth in the number of Indigenous Health Workers (from 1,009 in 2006 to 1,347 in 2016), but this is not commensurate with Aboriginal and Torres Strait Islander population growth (221 Indigenous Health Workers per 100,000 people in 2006 to 207 Indigenous Health Workers per 100,000 people in 2016). The growth is in Indigenous Health Workers aged ≥45 years, with declines in the proportion of Indigenous Health Workers aged ≤44 years. There was growth in workers in two states only, Queensland (increase 4.2 percentage points) and New South Wales (increase 6.6 percentage points). CONCLUSION: There are pressing concerns regarding the lack of growth and the ageing workforce of Aboriginal and Torres Strait Islander Health Workers. We remain concerned that little is being done to increase the retention and recruitment of this workforce. Implications for public health: Greater effort is needed to improve the recruitment and retention of Aboriginal and Torres Strait Islander Health Workers, particularly for younger age groups and males. A National Aboriginal and Torres Strait Islander Health Workforce Strategy needs to be implemented.

Assessing research impact: Australian Research Council criteria and the case of Family Wellbeing research.

Researchers worldwide are increasingly reporting the societal impact of their research as part of national research productivity assessments. However, the challenges they encounter in developing their impact case studies against specified government assessment criteria and how pitfalls can be mitigated are not reported. This paper examines the key steps taken to develop an Aboriginal Family Wellbeing (FWB) empowerment research impact case study in the context of an Australian Research Council (ARC) pilot research impact assessment exercise and the challenges involved in applying the ARC criteria. The requirement that researchers demonstrate how their institutions support them to conduct impactful research has the potential to create supportive environments for researchers to be more responsive to the needs of users outside academia. However, the 15-year reference period for the associated research underpinning the reported impact and the focus on researcher's current institutional affiliation constitute potential constraints to demonstrating the true impact of research. For researchers working with Indigenous people, relationships that build over long periods of time, irrespective of university affiliation, are critical to conducting impactful research. A more open-ended time-frame, with no institutional restrictions for the 'associated research' provides the best opportunity to demonstrate the true benefits of research not only for Indigenous people but for Australian society more broadly.

Analysing aggregate clinical data to support evaluation of the Tackling Indigenous Smoking program, 2014-16.

Objective The aim of this study was to assess the change in recording of client population smoking attributes (smoking status recorded and smoking status) in Tackling Indigenous Smoking (TIS)-funded services compared with non-funded services for Aboriginal and Torres Strait Islander people, 2014-16. Methods The study included a cohort of 152 Aboriginal-community controlled services with aggregate client smoking data from 2014 to 2016. Negative binomial regression was used to assess change in smoking status recorded and smoking status between TIS and non-TIS funded organisations. The models controlled for size of client population, jurisdiction and remoteness. Results From 2014 to 2016, the overall reporting rate (change in recording of smoking status) of client smoking status was 1.58-fold higher (95% confidence interval (CI) 1.30-1.91; P<0.001) in TIS-funded than non-TIS-funded services after controlling for year, remoteness and their interaction. The highest change in reporting of client smoking status was for TIS-funded services in remote areas (reporting ratio 6.55; 95% CI 5.18-8.27; P<0.001). In 2016, TIS-funded services reported higher overall levels of recording client smoking status (current, ex- and non-smokers) than non-TIS funded services (RR 1.11; 95% CI 1.00-1.28; P<0.001). There was no significant change in the reporting of smokers, ex-smokers or non-smokers over the three reporting periods. Conclusion The analysis shows higher reporting of the proportion of the service client population for services funded under the TIS program compared with non-TIS-funded services. Existing evidence suggests that following-up smokers with targeted clinical interventions once they have had smoking status recorded could reduce smoking rates in the long term. The public health contribution of this study has defined one method for assessing smoking attributes when using aggregate health service data. This method could be applied to future tobacco control programs in health services. What is known about the topic? Aboriginal and Torres Strait Islander smoking prevalence is high. The Aboriginal and Torres Strait Islander primary healthcare providers' national key performance indicators (nKPIs) are one data source that can track changes over time in smoking in clients of these services. What does this paper add? This paper presents the first analytical study and evaluation of the nKPI dataset items on smoking. What are the implications for practitioners? There is value in analysing routinely collected data in program evaluations. The method used in this paper demonstrates one approach that could be used to assess smoking indicators and their changes over time in TIS program evaluation.

Enhancing national data to align with policy objectives: Aboriginal and Torres Strait Islander smoking prevalence at finer geographic levels.

Objectives The aim of the study was to assess the utility of national Aboriginal survey data in a regional geospatial analysis of daily smoking prevalence for Aboriginal and Torres Strait Islander Australians and discuss the appropriateness of this analysis for policy and program impact assessment. Methods Data from the last two Australian Bureau of Statistics (ABS) national surveys of Aboriginal and Torres Strait Islander people, the National Aboriginal and Torres Strait Islander Social Survey 2014-15 (n=7022 adults) and the National Aboriginal and Torres Strait Islander Health Survey 2012-13 (n=10896 adults), were used to map the prevalence of smoking by Indigenous regions. Results Daily smoking prevalence in 2014-15 at Indigenous regions ranges from 27.1% (95%CI 18.9-35.3) in the Toowoomba region in Queensland to 68.0% (95%CI 58.1-77.9) in the Katherine region in the Northern Territory. The confidence intervals are wide and there is no significant difference in daily smoking prevalence between the two time periods for any region. Conclusion There are significant limitations with analysing national survey data at finer geographical scales. Given the national program for Indigenous tobacco control is a regional model, evaluation requires finer geographical analysis of smoking prevalence to inform public health progress, policy and program effects. Options to improve the data currently collected include increasing national survey sample sizes, implementing a smoking status question in census surveys, investing in current cohort studies focused on this population or implementing localised surveys. What is known about the topic? The last geospatial analysis of Aboriginal and Torres Strait Islander smoking prevalence was undertaken in 1997. Current national survey data have not been analysed geospatially. What does this paper add? This paper provides new insights into the use of national survey data for understanding regional patterns and prevalence levels of smoking in Aboriginal and Torres Strait Islander populations. What are the implications for practitioners? The findings of the study suggest caution when interpreting prevalence maps and highlight the need for greater sample sizes in national survey data. The analysis is also an opportunity to assess the use of national survey data in evaluating the policy impact of programs targeted at a regional level.

The Aboriginal and Torres Strait Islander smoking epidemic: what stage are we at, and what does it mean?

Smoking is the leading contributor to the burden of disease among Aboriginal and Torres Strait Islander Australians, and there is considerable potential for change. Understanding the epidemic stage may provide insight into probable trends in smoking-attributable mortality, and inform program and policy development. Tobacco use among Aboriginal and Torres Strait Islander Australians has declined substantially, accompanied by declining tobacco-related cardiovascular mortality. Based on the available evidence, we expect tobacco-related cancer mortality to remain high, but peak within the next decade; however, there is a critical need for improved evidence to make an accurate assessment. The continuation and expansion of comprehensive tobacco reduction measures is expected to further decrease tobacco use. Health gains will be observed over both the short and long term.

Plain packaging implementation: perceptions of risk and prestige of cigarette brands among Aboriginal and Torres Strait Islander people.

OBJECTIVES: To assess the impact of plain packaging with larger graphic health warnings on perceptions of risk and prestige related to different cigarette brands among Aboriginal and Torres Strait Islander people in the Australian Capital Territory. We hypothesised that the changes would decrease perceptions that 'some cigarette brands are more harmful than others', and that 'some brands are more prestigious than others', and this would be stronger among participants aged ≤35 years, and among smokers compared with non-smokers. METHODS: Participants completed the survey prior to packaging changes, and were followed up 12 months later (n=98). Repeated measures ANCOVAs assessed perception changes. RESULTS: Following plain packaging implementation, there was a significant reduction in perceptions that 'some cigarette brands are more harmful than others'. There was no overall change in perceptions of prestige. However, there was a significant interaction for age. Analyses indicated a reduction in perceptions that 'some cigarette brands are more prestigious than others' among younger participants (p=0.05), but no change among older participants (p>0.20). There was no interaction for smoking status for perceptions of prestige, indicating smokers' and non-smokers' perceptions did not differ on this measure. CONCLUSIONS: These findings provide support for the packaging changes.

A systematic review protocol: social network analysis of tobacco use.

BACKGROUND: Tobacco use is the single most preventable cause of death in the world. Evidence indicates that behaviours such as tobacco use can influence social networks, and that social network structures can influence behaviours. Social network analysis provides a set of analytic tools to undertake methodical analysis of social networks. We will undertake a systematic review to provide a comprehensive synthesis of the literature regarding social network analysis and tobacco use. The review will answer the following research questions: among participants who use tobacco, does social network structure/position influence tobacco use? Does tobacco use influence peer selection? Does peer selection influence tobacco use? METHODS: We will follow the Preferred Reporting Items for Systemic Reviews and Meta-Analyses (PRISMA) guidelines and search the following databases for relevant articles: CINAHL (Cumulative Index to Nursing and Allied Health Literature); Informit Health Collection; PsycINFO; PubMed/MEDLINE; Scopus/Embase; Web of Science; and the Wiley Online Library. Keywords include tobacco; smoking; smokeless; cigarettes; cigar and 'social network' and reference lists of included articles will be hand searched. Studies will be included that provide descriptions of social network analysis of tobacco use.Qualitative, quantitative and mixed method data that meets the inclusion criteria for the review, including methodological rigour, credibility and quality standards, will be synthesized using narrative synthesis. Results will be presented using outcome statistics that address each of the research questions. DISCUSSION: This systematic review will provide a timely evidence base on the role of social network analysis of tobacco use, forming a basis for future research, policy and practice in this area. This systematic review will synthesise the evidence, supporting the hypothesis that social network structures can influence tobacco use. This will also include exploring the relationship between social network structure, social network position, peer selection, peer influence and tobacco use across all age groups, and across different demographics. The research will increase our understanding of social networks and their impact on tobacco use, informing policy and practice while highlighting gaps in the literature and areas for further research.

Walan Girri: developing a culturally mediated case management model for problematic alcohol use among urban Indigenous people.

OBJECTIVE: To describe the design and implementation of a culturally mediated case management model at Winnunga Nimmityjah Aboriginal Health Service (Winnunga) for Indigenous clients who consume alcohol at problematic levels. METHODS: Our research took place from March 2008 to March 2010 in the Australian Capital Territory and built on previous research partnerships between Winnunga and The Australian National University's National Centre for Epidemiology and Population Health. We conducted a review of existing models to determine elements for consideration in the community controlled setting, and conducted staff surveys to assess current levels of skill and confidence around alcohol screening, brief intervention and care planning. Using the information from the review and staff surveys, we then undertook staff capacity building to build confidence and skills in conducting alcohol screening, brief intervention and care planning. This process was driven by Winnunga's social health team. To meet Medicare benefits schedule requirements, and frame the study within the Aboriginal and Torres Strait Islander Chronic Disease Package framework, we included team care arrangements, care planning and health checks. RESULTS: Elements of case management were suggested by staff and incorporated into the final model. Forty staff in the health service participated in identifying training needs for the development of the case management model and undertook a range of training before the model was implemented. Staff working within the social health team decided that the focus of the case management was to build a stronger future for their clients, hence the name of the case management model 'Walan Girri' (Wiradjuri language for strong future). The model included a package of screening instruments and brief intervention, related polices and discussion of 'mob' and 'country.' Changes in Winnunga management and staff, the composition of the research team and the way Walan Girri evolved led to protracted development and implementation. CONCLUSIONS: This project highlights considerations for implementing a case management model in a dynamic health service environment. Capacity building for Winnunga staff and for an Indigenous PhD scholar were part of the process and were integral in maintaining momentum in the project.

Study protocol--Indigenous Australian social networks and the impact on smoking policy and programs in Australia: protocol for a mixed-method prospective study.

BACKGROUND: Tobacco use is the most preventable cause of morbidity and mortality in Australia. Comprehensive tobacco control has reduced smoking rates in Australia from approximately 34 per cent in 1980 to 15 per cent in 2010. However, 46 per cent of Aboriginal and Torres Strait Islander people (Indigenous Australians) smoke on a daily basis, more than double the rate of non-Indigenous Australians. The evidence of effective tobacco control strategies for Indigenous Australians is relatively scarce. The aim of this study is to (i) explore the influences of smoking in Indigenous Australian people and to (ii) help inform and evaluate a multi-component tobacco control strategy. The study aims to answer the following questions:--do individuals' social networks influence smoking behaviours;--is there an association between various social and cultural factors and being a smoker or non-smoker; and--does a multi-component tobacco control program impact positively on tobacco behaviours, attitudes and beliefs in Indigenous Australians. METHODS AND DESIGN: Our prospective study will use a mixed-method approach (qualitative and quantitative), including a pre- and post-test evaluation of a tobacco control initiative. The study will explore the social and cultural context underlying Indigenous Australian tobacco use and associated factors which influence smoking behaviour. Primary data will be collected via a panel survey, interviews and focus groups. Secondary data will include de-identified PBS items related to smoking and also data collected from the Quitlines call service. Network analysis will be used to assess whether social networks influence smoking behaviours. For the survey, baseline differences will be tested using chi(2) statistics for the categorical and dichotomous variables and t-tests for the continuous variables, where appropriate. Grounded theory will be used to analyse the interviews and focus groups. Local Aboriginal community controlled organisations will partner in the study. DISCUSSION: Our study will explore the key factors, including the influence of social networks, that impact on tobacco use and the extent to which smoking behaviours transcend networks within the Indigenous Australian community in the ACT. This will add to the evidence-base, identifying influential factors to tobacco use and the effectiveness and influence of a multi-component tobacco control strategy.

Health service attendance patterns in an urban Aboriginal health service.

OBJECTIVES: To describe the health service attendance patterns of urban Aboriginal and Torres Strait Islander (Aboriginal) Australians and make comparisons with those of the general Australian population. DESIGN AND SETTING: General practitioner-completed survey of all attendances over two separate 2-week periods in 2006 at an urban Aboriginal health service in Canberra, which provides services for about 3500 patients per annum. MAIN OUTCOME MEASURES: Standardised attendance ratios (SARs) for a range of health problems, using patients attending Australian general practice for the same reasons as the reference population. RESULTS: Patients attending the Aboriginal health service were significantly younger than the Australian general practice patient reference population. The most common conditions managed were psychological, encompassing substance misuse; psychological problems accounted for 24% of all attendances. Patients attending the Aboriginal health service had higher rates of attendance for psychological conditions (SAR, 2.14; 95% CI, 2.01-2.28), endocrine conditions (SAR, 2.44; 95% CI, 2.29-2.60) and neurological conditions (SAR, 2.90; 95% CI, 2.71-3.09), as well as for circulatory, digestive and male and female genital conditions, than the reference population. Patients attending the Aboriginal health service had significantly lower attendance rates than the Australian population for respiratory illnesses, and conditions related to eyes or ears. CONCLUSIONS: At this urban Aboriginal health service, attendance patterns reflected complex health care needs that are different from those expected of a population of this age. Urban Aboriginal health service attendance appears to reflect significant ill health among the patients, aligning more with Aboriginal health statistics nationally rather than health statistics for urban non-Aboriginal Australians.

A review of Australian health privacy regulation regarding the use and disclosure of identified data to conduct data linkage.

OBJECTIVE: To review Australian legislation about privacy, focusing on provisions within the regulations to conduct health research using identified data and lobby for regulatory change in the ACT. METHOD: A systematic review of Commonwealth and jurisdiction health privacy regulation. RESULTS: Australia has a number of regulations for the protection of privacy of health information. In addition to Commonwealth privacy laws, there are jurisdictional regulations concerning protection of health information. These range from no specific legislation in Western Australia, to a code of practice in South Australia, and Commonwealth legislation that deals with use and disclosure of identified health information to conduct health research (Sections 95 and 95A of the Privacy Act 1988). At the time of this review, all but one jurisdiction, the Australian Capital Territory (ACT), had provisions for disclosing identified health information for health research. CONCLUSION: The ACT's Health Records (Privacy and Access) Act was inconsistent with the other Australian regulation concerning the use of identified health data in health research. IMPLICATIONS: The information from the review was used to inform the ACT Government that the health privacy regulations in place were inconsistent with the rest of Australia and resulted in regulatory change in the ACT. ACT legislation was amended to include provisions for the disclosure of identified health information for health research under controlled circumstances. The amendments were passed in December 2005, facilitating future health research involving data linkage in the ACT.

Aboriginal and Torres Strait Islander health assessments - barriers to improving uptake.

BACKGROUND: This study investigated the reasons for low uptake of Medicare Benefits Schedule rebated health assessments for Aboriginal people and Torres Strait Islanders in mainstream general practice in the Australian Capital Territory region. METHOD: Surveys gauging attitudes to Aboriginal and Torres Strait Islander health issues were completed by 145 general practitioners, practice and division staff, and semistructured interviews were conducted with 16 staff members from nine general practices. RESULTS: Survey responses indicated concerns about introducing routine identification processes for all patients. Interviews showed low levels of identification and significant barriers to change. DISCUSSION: Barriers to the uptake of health assessments include low levels of routine identification of Aboriginal and Torres Strait Islander patients, little awareness of Aboriginal and Torres Strait Islander specific GP mediated health interventions, and lack of support for preventive health interventions targeted on the basis of Aboriginal and or Torres Strait Islander status. Poor uptake is likely to persist without a more strategic approach to overcoming these barriers.