Wearables for early detection of atrial fibrillation and timely referral for Indigenous people ≥55 years: mixed-methods protocol.

INTRODUCTION: Digital health technologies have the potential to provide cost-effective care to remote and underserved populations. To realise this potential, research must involve people not traditionally included. No research focuses on the acceptability and feasibility of older Indigenous people using wearables for early atrial fibrillation (AF) detection. This protocol compares digital augmentation against standard practice to detect AF, evaluate heart health self-efficacy and health literacy changes and identify barriers in collaboration with Aboriginal Community Controlled Health Organisations. It will establish a framework for implementing culturally safe and acceptable wearable programmes for detecting and managing AF in Indigenous adults ≥55 years and older. METHODS: This mixed-methods research will use the Rambaldini model of collective impact, a user-centred, co-design methodology and yarning circles, a recognised Indigenous research methodology to assess the cultural safety, acceptability, feasibility and efficacy of incorporating wearables into standard care for early AF detection. ANALYSIS: Qualitative data will be analysed to create composite descriptions of participants' experiences and perspectives related to comfort, cultural safety, convenience, confidence, family reactions and concerns. Quantitative device data will be extracted and analysed via Statistical Product and Service Solutions (SPSS). CONCLUSION: Prioritising perspectives of older Indigenous adults on using wearables for detecting and monitoring cardiovascular disease will ensure that the findings are effective, relevant and acceptable to those impacted. ETHICS AND DISSEMINATION: Findings will be published in open-source peer-reviewed journals, shared at professional conferences, described in lay terms and made available to the public. The AHMRC HREC Reference Number approved 1135/15.

A mixed methods study of Aboriginal health workers' and exercise physiologists' experiences of co-designing chronic lung disease 'yarning' education resources.

BACKGROUND: Despite the high incidence of chronic obstructive pulmonary disease (COPD) in Aboriginal communities in Australia, Aboriginal Health Workers (AHWs) have limited knowledge about effective management. AIM: To evaluate an online education program, co-designed with AHWs and exercise physiologists (EPs) or physiotherapists (PTs), to increase knowledge about COPD and its management. METHODS: AHWs and EPs from four Aboriginal Community Controlled Health Services (ACCHS) were recruited. An Aboriginal researcher and a physiotherapist experienced in COPD management and pulmonary rehabilitation (PR) delivered seven online education sessions. These sessions used co-design principles and an Aboriginal pedagogy framework '8 Ways of learning', which incorporates Aboriginal protocols and perspectives to realign teaching techniques and strengthen learning outcomes. Topics covered were: How the lungs work; What is COPD; Medications and how to use inhalers and COPD Action Plans; Why exercise is important; Managing breathlessness; Healthy eating; Managing anxiety and depression. After each session, AHWs with support from EPs, co-designed education 'yarning' resources using Aboriginal ways of learning to ensure topics were culturally safe for the local Aboriginal community and practiced delivering this at the following session. At the end of the program participants completed an anonymous online survey (5-point Likert scale) to assess satisfaction, and a semi-structured interview about their experience of the online education. RESULTS: Of the 12 participants, 11 completed the survey (7 AHWs, 4 EPs). Most (90%) participants strongly agreed or agreed that the online sessions increased knowledge and skills they needed to support Aboriginal patients with COPD. All (100%) participants felt: their cultural perspectives and opinions were valued and that they were encouraged to include cultural knowledge. Most (91%) reported that delivering their own co-designed yarning scripts during the online sessions improved their understanding of the topics. Eleven participants completed semi-structured interviews about participating in online education to co-design Aboriginal 'yarning' resources. Themes identified were: revealing the Aboriginal lung health landscape; participating in online learning; structuring the online education sessions; co-designing with the facilitators. CONCLUSIONS: Online education using co-design and 8 Ways of learning was rated highly by AHWs and EPs for improving COPD knowledge and valuing cultural perspectives. The use of co-design principles supported the cultural adaptation of COPD resources for Aboriginal people with COPD. TRIAL REGISTRATION: PROSPERO (registration number: CRD42019111405).

Applying collective impact in Aboriginal health services and research: three case studies tell an important story.

BACKGROUND: Co-design is the latest buzzword in healthcare services and research and is ubiquitous in Australian funding grants and policy documents. There are no standards for what constitutes co-design and it is often confused with less collaborative processes such as consultation. Collective impact is a co-design tool used for complex and entrenched problems. It uses a systematic approach and requires power and resource sharing. We applied collective impact to three research projects with Aboriginal communities. This paper explores how collective impact can enhance participation and outcomes in healthcare services and research. METHODS: We evaluated the collective impact process and outcomes in three translational health research projects with Aboriginal people and communities using a case study approach. We adapted the model using an iterative co-design approach. RESULTS: We adapted the collective impact model in three ways: 1) replaced the precondition of 'problems that are urgent' with 'problems that are complex and entrenched'; 2) added to the 'common agenda' the requirement to establish a planned exit and long-term sustainability strategy from the outset; and 3) added the delivery of a public policy outcome as a result of the collective impact process. CONCLUSIONS: Aboriginal and Torres Strait Islander health is an important public policy priority that requires new and different approaches to service delivery and research. This study adapted the collective impact approach and developed the Rambaldini model through three translational health research case studies and found that a modified collective impact approach is an effective tool for engagement and outcomes.

Implementing evidence into practice to improve chronic lung disease management in Indigenous Australians: the breathe easy, walk easy, lungs for life (BE WELL) project (protocol).

BACKGROUND: Strong evidence exists for the benefits of pulmonary rehabilitation (PR) for people with chronic obstructive pulmonary disease (COPD), however the availability of culturally safe PR for Aboriginal and Torres Strait Islander (Indigenous) Peoples is limited. The study aims to determine whether PR can be implemented within Aboriginal Community Controlled Health Services (ACCHS) to improve outcomes for Indigenous people with COPD. METHODS: Multi-centre cohort study using participatory action research guided by the Knowledge-to-Action Framework. ACCHS supportive of enhancing services for chronic lung disease will be recruited. Aboriginal Health Workers (AHW) and the exercise physiologist (EP) or physiotherapist (PT) within these ACCHS will attend a workshop aimed at increasing knowledge and skills related to management of COPD and the provision of PR. Indigenous people with COPD will be invited to attend an 8-week, twice weekly, supervised PR program. OUTCOMES: AHW, EP/PT knowledge, skills and confidence in the assessment and management of COPD will be measured before and immediately after the BE WELL workshop and at 3, 6 and 12 months using a survey. PR participant measures will be exercise capacity (6-minute walk test (6MWT), health-related quality of life and health status at commencement and completion of an 8-week PR program. Secondary outcomes will include: number, length and cost of hospitalisations for a COPD exacerbation in 12-months prior and 12-months post PR; local contextual factors influencing implementation of PR; specific respiratory services provided by ACCHS to manage COPD prior to project commencement and at project completion. Repeated measures ANOVA will be used to evaluate changes in knowledge and confidence over time of AHWs and EP/PTs. Paired t-tests will be used to evaluate change in patient outcomes from pre- to post-PR. Number of hospital admissions in the 12 months before and after the PR will be compared using unpaired t-tests. DISCUSSION: Pulmonary rehabilitation is an essential component of best-practice management of COPD and is recommended in COPD guidelines. Indigenous peoples have limited access to culturally safe PR programs. This study will evaluate whether PR can be implemented within ACCHS and improve outcomes for Indigenous people with COPD. Trial registration Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12617001337369, Registered 2nd September 2017 https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373585&isClinicalTrial=False.

Gaps in COPD Guidelines of Low- and Middle-Income Countries: A Systematic Scoping Review.

BACKGROUND: Guidelines are critical for facilitating cost-effective COPD care. Development and implementation in low-and middle-income countries (LMICs) is challenging. To guide future strategy, an overview of current global COPD guidelines is required. RESEARCH QUESTION: We systematically reviewed national COPD guidelines, focusing on worldwide availability and identification of potential development, content, context, and quality gaps that may hamper effective implementation. STUDY DESIGN AND METHODS: Scoping review of national COPD management guidelines. We assessed: (1) global guideline coverage; (2) guideline information (authors, target audience, dissemination plans); (3) content (prevention, diagnosis, treatments); (4) ethical, legal, and socio-economic aspects; and (5) compliance with the eight Institute of Medicine (IOM) guideline standards. LMICs guidelines were compared with those from high-income countries (HICs). RESULTS: Of the 61 national COPD guidelines identified, 30 were from LMICs. Guidelines did not cover 1.93 billion (30.2%) people living in LMICs, whereas only 0.02 billion (1.9%) in HICs were without national guidelines. Compared with HICs, LMIC guidelines targeted fewer health-care professional groups and less often addressed case finding and co-morbidities. More than 90% of all guidelines included smoking cessation advice. Air pollution reduction strategies were less frequently mentioned in both LMICs (47%) and HICs (42%). LMIC guidelines fulfilled on average 3.37 (42%) of IOM standards, compared with 5.29 (66%) in HICs (P < .05). LMICs scored significantly lower compared with HICs regarding conflicts of interest management, updates, articulation of recommendations, and funding transparency (all, P < .05). INTERPRETATION: Several development, content, context, and quality gaps exist in COPD guidelines from LMICs that may hamper effective implementation. Overall, COPD guidelines in LMICs should be more widely available and should be transparently developed and updated. Guidelines may be further enhanced by better inclusion of local risk factors, case findings, and co-morbidity management, preferably tailored to available financial and staff resources.

What Solutions Exist for Developmental Delays Facing Indigenous Children Globally? A Co-Designed Systematic Review.

Early childhood is important for future cognitive and educational outcomes. Programs overcoming barriers to engagement in early education for Indigenous children must address family cultural needs and target developmental delays. This systematic review identifies culturally adapted programs to improve developmental delays among young children, in response to an identified priority of a remote Indigenous community. Five databases (the Cochrane Library, Embase, Medline, Scopus and CINAHL) were searched for English language papers in January 2018. Study quality was assessed, and findings were analysed thematically. Findings were presented to the community at an event with key stakeholders, to determine their inclusion and face validity. Seven relevant studies, published between 1997 and 2013, were identified by the researchers and each study was supported by the community for inclusion. Three studies included on Native American children and four studies included children from non-Indigenous disadvantaged backgrounds. Findings were reported narratively across four themes: storytelling to improve educational outcomes; family involvement improved development; culturally adapted cognitive behavioural therapy to reduce trauma; rewards-based teaching to improve child attention. Limited published research on culturally adapted and safe interventions for children with developmental delays exists but these four themes from seven studies identify useful components to guide the community and early childhood program development.

Accuracy of reporting of Aboriginality on administrative health data collections using linked data in NSW, Australia.

BACKGROUND: Aboriginal people are under-reported on administrative health data in Australia. Various approaches have been used or proposed to improve reporting of Aboriginal people using linked records. This cross-sectional study used self-reported Aboriginality from the NSW Patient Survey Program (PSP) as a reference standard to assess the accuracy of reporting of Aboriginal people on NSW Admitted Patient (APDC) and Emergency Department Data Collections (EDDC), and compare the accuracy of selected approaches to enhance reporting Aboriginality using linked data. METHODS: Ten PSP surveys were linked to five administrative health data collections, including APDC, EDDC, perinatal, and birth and death registration records. Accuracy of reporting of Aboriginality was assessed using sensitivity, specificity, and positive and negative predictive values (PPVs and NPVs) and F score for the EDDC and APDC as baseline and four enhancement approaches using linked records: "Most recent linked record", "Ever reported as Aboriginal", and two approaches using a weight of evidence, "Enhanced Reporting of Aboriginality (ERA) algorithm" and "Multi-stage median (MSM)". RESULTS: There was substantial under-reporting of Aboriginality on APDC and EDDC records (sensitivities 84 and 77% respectively) with PPVs of 95% on both data collections. Overall, specificities and NPVs were above 98%. Of people who were reported as Aboriginal on the PSP, 16% were not reported as Aboriginal on any of their linked records. Record linkage approaches generally increased sensitivity, accompanied by decrease in PPV with little change in overall F score for the APDC and an increase in F score for the EDDC. The "ERA algorithm" and "MSM" approaches provided the best overall accuracy. CONCLUSIONS: Weight of evidence approaches are preferred when record linkage is used to improve reporting of Aboriginality on administrative health data collections. However, as a substantial number of Aboriginal people are not reported as Aboriginal on any of their linked records, improvements in reporting are incomplete and should be taken into account when interpreting results of any analyses. Enhancement of reporting of Aboriginality using record linkage should not replace efforts to improve recording of Aboriginal people at the point of data collection and addressing barriers to self-identification for Aboriginal people.

Exercise-based interventions for Indigenous adults with chronic lung disease in Australia, Canada, New Zealand, and USA: a systematic review.

Indigenous peoples in Australia, New Zealand, Canada, and the United States of America (USA) have a higher burden of chronic lung disease than non-Indigenous people. Exercised-based interventions, such as pulmonary rehabilitation, are highly effective to manage chronic lung disease. The outcomes of these interventions for Indigenous people require evaluation. The aim of this review was to critically appraise the literature on the impact of exercise-based interventions on quality of life, exercise capacity and health care utilisation in Indigenous adults with chronic lung disease in Australia, New Zealand, Canada, and USA. The Cochrane Library, Medline, Embase, CINAHL, Scopus, Psychinfo, APAIS-Aboriginal Health and PEDro databases were searched for peer-reviewed and grey literature that evaluated exercise-based interventions, such as pulmonary rehabilitation for Indigenous adults with chronic lung disease in Australia, New Zealand, Canada, and USA. Two authors independently screened and reviewed titles and abstract and full texts of potentially eligible studies for inclusion. An Indigenous decolonisation methodological framework was also applied to evaluate Indigenous governance, involvement, and engagement in the studies. A total of 3,598 records were screened, nine full papers were reviewed, and one was study included, which was a cardiopulmonary rehabilitation program for Indigenous people in Australia. Participants with chronic respiratory or heart disease significantly improved functional exercise capacity and quality of life [six-minute walk distance mean change (95% CI) 79 metres (47 to 111); Chronic Respiratory Questionnaire Dyspnoea 0.9 points (0.2 to 1.5)]. Several items of the decolonisation framework were addressed. Only one study was able to be included in the review, highlighting the paucity of research about culturally safe exercise-based interventions for Indigenous adults with chronic lung disease. There is a need for further research with strong Indigenous governance, involvement, and engagement.

Benefits of not smoking during pregnancy for Australian Aboriginal and Torres Strait Islander women and their babies: a retrospective cohort study using linked data.

OBJECTIVES: To provide evidence for targeted smoking cessation policy, the aim of this study was to compare pregnancy outcomes of Aboriginal mothers who reported not smoking during pregnancy with Aboriginal mothers who reported smoking during pregnancy. DESIGN: Population based retrospective cohort study using linked data. SETTING: New South Wales, the most populous Australian state. POPULATION: 18 154 singleton babies born to 13 477 Aboriginal mothers between 2010 and 2014 were identified from routinely collected New South Wales datasets. Aboriginality was determined from birth records and from four linked datasets through an Enhanced Reporting of Aboriginality algorithm. EXPOSURE: Not smoking at any time during pregnancy. MAIN OUTCOME MEASURES: Unadjusted and adjusted relative risks (aRR) and 95% CIs from modified Poisson regression were used to examine associations between not smoking during pregnancy and maternal and perinatal outcomes including severe morbidity, inter-hospital transfer, perinatal death, preterm birth and small-for-gestational age. Population attributable fractions (PAFs) were calculated using adjusted relative risks. RESULTS: Compared with babies born to mothers who smoked during pregnancy, babies born to non-smoking mothers had a lower risk of all adverse perinatal outcomes including perinatal death (aRR=0.58, 95% CI 0.44 to 0.76), preterm birth (aRR=0.58, 95% CI 0.53 to 0.64) and small-for-gestational age (aRR=0.35, 95% CI 0.32 to 0.39). PAFs (%) were 27% for perinatal death, 26% for preterm birth and 48% for small-for-gestational-age. Compared with women who smoked during pregnancy (n=8919), those who did not smoke (n=9235) had a lower risk of being transferred to another hospital (aRR=0.76, 95% CI 0.66 to 0.89). CONCLUSIONS: Babies born to women who did not smoke during pregnancy had a lower risk of adverse perinatal outcomes. Rates of adverse outcomes among Aboriginal non-smokers were similar to those among the general population. These results quantify the proportion of adverse perinatal outcomes due to smoking and highlight why effective smoking cessation programme are urgently required for this population.