Australian Community Setting Research Articles

Pharmacists’ perspectives on methamphetamine use disorder in the Australian community setting

Background: Methamphetamine Use Disorder (MUD) poses significant harm to individuals and communities. In Australia, pharmacies have been involved in harm reduction services, primarily focusing on opioids. While much is known about pharmacists' attitudes toward opioid use disorder, there is limited understanding of their perspectives and management of MUD. This study aimed to explore pharmacists’ perspectives on the provision of services to clients with MUD. Methods: Recruitment of pharmacists involved a snow-ball and convenience sampling strategy across Sydney, Australia. Semi-structured interviews were undertaken to explore pharmacists’ perspectives on the treatment and management of MUD in the pharmacy setting. Transcribed interviews were qualitatively analysed using an inductive approach, coding themes from the data emerging. Results: Nineteen pharmacists completed the interviews. The strongest theme emerging from the transcripts described pharmacists’ reported unfamiliarity with MUD. Participating pharmacists almost unanimously perceived there was a lack of educational resources surrounding MUD, inadequate university curricular on MUD, and a lack of support for pharmacists’ role in any prospective MUD treatment programs. Conclusion: Studies indicate that pharmacists are often unfamiliar with MUD, which, along with insufficient educational resources, causes low confidence and hinders their ability to support individuals with MUD. Implementing targeted educational interventions for pharmacists is essential to improve their effectiveness in MUD treatment programmes.

What are the attitudes and perceptions of general practitioners about the role of nurse practitioners in the community care setting: A scoping review

BackgroundThe Nurse Practitioner role in Australia is slowly expanding, with a well-established body of evidence supporting their introduction. Yet, there is a lack of consistent support from the medical profession for this role. Nurse Practitioners wishing to work in the community setting may, therefore, experience resistance from General Practitioners. ObjectiveTo identify and explore the attitudes and perceptions of Australian General Practitioners about Nurse Practitioners' community settings. To explore what is the view of GPs outside of Australia on this topic. MethodA scoping review of the Cochrane, MEDLINE, Psych INFO, and CINHAL databases was undertaken from 1995 to April 2023 and reported using PRISMA. Quality evaluation tools devised by Dixon-Woods et al. (2005) and previously used by Paterson et al. (2015) were used to evaluate the included studies. A narrative synthesis was then undertaken using the method described by Whittemore and Knafl (2005). FindingsThe scoping review identified 1623 potential publications. After a comparison of the title and abstract to the inclusion and exclusion criteria, 20 publications underwent an in-depth review, eight publications met the inclusion criteria for a full review. The review did not identify a publication from Australia. Elsewhere the attitudes of General Practitioners were influenced by the lack of definition of the Nurse Practitioner role, a lack of knowledge of the Nurse Practitioner skill level, fear of service duplication, deterioration in patient relationships, who had responsibility for the role and funding for the role. ConclusionThere is a lack of evidence in an Australian context to determine if General Practitioners in Australia have similar views to their international counterparts. Careful planning needs to be undertaken to overcome potential issues and to enable the Nurse Practitioner role to be effectively implemented in an Australian community setting.

Identification of Barriers and Facilitators to the Use of a New Pain Assessment Mobile Health Application by Family Carers of People with Dementia: A Qualitative Study

This study identified potential barriers and facilitators to the implementation of a medical device in the form of a mobile health (mHealth) application, (app) called PainChek®, by family carers of individuals with dementia in the Australian community setting. Focus groups and a phone interview took place with family carers and healthcare professionals. Data were analysed thematically. 6 family carers and 8 healthcare professionals participated across 2 focus groups and 1 phone interview. Themes related to the user, innovation/PainChek®, and contextual factors were identified. Barriers to use included age, physical limitations, cost, technical issues, misinterpretation of how PainChek® works, and influence of family. Facilitators included a willingness to use mHealth Apps and previous experience. Some themes acted as both barriers and facilitators depending on the situation such as the healthcare team's acceptance. Targeted interventions and support strategies, leveraging facilitators are essential to overcome barriers related to user, intervention, and context and to enhance successful PainChek® implementation, thereby improving pain management in individuals with dementia. Future research is recommended to develop effective implementation strategies to utilise the facilitators and overcome the barriers to improve the implementation of PainChek®.

HIV associated neurocognitive disorder screening and diagnosis pathways in Australia: a scoping review and international implications

ABSTRACT Symptomatic HIV-associated neurocognitive disorder (HAND) is a complication of HIV (cognitive impairment, difficulties with everyday functioning). If detected early, interventions assist with optimizing care, avoiding rapid decline and enhancing coping. There remains inconsistency surrounding screening/diagnosis information within Australian healthcare professionals and community settings. A scoping review of academic literature, government policies and non-government organisations (NGOs) was conducted to map existing screening/diagnosis information using the guidelines of Joanna Briggs Institute. A literature search of EBSCOhost and Medline (dates: 2015–2021), the Australian government NGO web domains, Google and unpublished academic works was conducted (July 2021) and updated (December 2022) to identify Australian items (past 5 years). Seventeen items met the inclusion criteria. No government guidelines were identified. Various HIV-related organisations proposed different diagnostic guidelines. Most HAND research originated in Sydney. The most accessible information was from Dementia Australia, with some inaccuracies noted. There is scant Australian research/information on HAND screening/diagnosis. HAND translational research and screening/diagnosis standards are urgently needed to inform best practices. The Australian context is used to discuss international implications regarding higher-income countries with similar patterns/healthcare.

Identifying and responding to family adversity in Australian community and primary health settings: a multi-site cross sectional study.

Unaddressed family adversity has potentially modifiable, negative biopsychosocial impacts across the life course. Little is known about how Australian health and social practitioners identify and respond to family adversity in community and primary health settings. To describe, in two Australian community health services: (1) the number of adversities experienced by caregivers, (2) practitioner identification of caregivers experiencing adversity, (3) practitioner response to caregivers experiencing adversity, and (4) caregiver uptake of referrals. Survey of caregivers of children aged 0-8 years attending community health services in Victoria and New South Wales (NSW). Analysis described frequencies of caregiver self-reported: (1) experiences of adversity, (2) practitioner identification of adversity, (3) practitioner response to adversity, and (4) referral uptake. Analyses were sub-grouped by three adversity domains and site. 349 caregivers (Victoria: n = 234; NSW: n = 115) completed the survey of whom 88% reported experiencing one or more family adversities. The median number of adversities was 4 (2-6). Only 43% of participants were directly asked about or discussed an adversity with a practitioner in the previous 6 months (Victoria: 30%; NSW: 68%). Among caregivers experiencing adversity, 30% received direct support (Victoria: 23%; NSW: 43%), and 14% received a referral (Victoria: 10%; NSW: 22%) for at least one adversity. Overall, 74% of caregivers accepted referrals when extended. The needs of Australian families experiencing high rates of adversity are not systematically identified nor responded to in community health services. This leaves significant scope for reform and enhancement of service responses to families experiencing adversity.

Optimising community health services in Australia for populations affected by stigmatised infections: What do service users want?

Stigma in health services undermines diagnosis, treatment and successful health outcomes for all communities, but especially for those affected by blood-borne viruses and sexually transmitted infections (STIs). This study sought to examine experiences in accessing and receiving health services, including what characteristics promoted better health, safety and well-being for people with blood-borne viruses or STIss. It conducted 46 in-depth interviews with people who inject drugs, gay men and other men who have sex with men, sex workers, people in custodial settings, culturally and linguistically diverse people, Indigenous Australians and young people in one Australian urban community setting. Findings reveal that stigma persists in the provision of healthcare services, and that previous experiences of discrimination or fear of mistreatment may result in a reluctance to continue to access services. On-going staff training and education are important to ensure healthcare environments are welcoming and inclusive. Specialised services and services that employed peers were seen as favourable. Attending different services for different health needs created particular access challenges and undermined participant ability to engage in more holistic healthcare. The fragmented structure of health services was thus seen as a barrier to accessing health services, and stronger collaboration between health services is recommended.

The extent to which off-patent registered prescription medicines are used for off-label indications in Australia: A scoping review.

AimThe aim of this scoping review was to determine the extent of off-patent prescription medicine use beyond registered indications in various Australian clinical settings.MethodThe review followed the Joanna Briggs Institute approach and reported using PRISMA Extension for Scoping Reviews. Online databases were used to identify published literature about off-patent registered prescription medicines used for off-label indications in Australian public hospital, community and primary healthcare settings. In addition, empirical data from the Queensland and the South Australian state-wide medicine formularies were screened for the same medication/off-label indication dyads identified in the literature, and other locally approved uses.ResultsOverall, fourteen studies were included, conducted in public hospitals (n = 11), palliative care units (n = 2) and the community setting (n = 1). There were 213 reports extracted from the literature describing off-patent registered prescription medicines used for off-label indications, representing 128 unique medication/off-label indication dyads and 32 different medicines. Of these, just five medication/off-label indication dyads were approved for use on both the Queensland and South Australian state-wide medicine formularies, with 12 others only approved for use in Queensland and 16 others only approved for use in South Australia. Further examination of these state-wide formularies demonstrated that the use of off-patent registered prescription medicines beyond registered indications is more extensive than has been reported to date in the literature. There were 28 additional medication/off-label indication dyads approved on the Queensland state-wide medicine formulary and 14 such examples approved for use in South Australia. Of these, just two medication/off-label indication dyads were approved for use on both formularies.ConclusionThe extent to which off-patent registered prescription medicines have been repurposed in clinical settings for off-label indications in Australia is greater than previously reported in the literature. Usage and funded availability of certain medication/off-label indication dyads, varies across Australia. These results further expose the two tiered system of medicines regulation in Australia, and its impact on equity of access to medicines. Further research is required to support policy change to encourage submission of registration updates for off-patent prescription medicines.

Welcomeness for people with substance use disorders to general practice: a qualitative study.

Good primary care for people with substance use disorders (SUDs) is crucial given the high prevalence of SUDs and overdose deaths. To explore general practice care for people with a history of SUDs from the perspectives of women involved with the criminal justice system. Qualitative interview study with pre- and postrelease interviews, undertaken in Australian prisons and community settings. We utilized thematic analysis informed by constructivist grounded theory. We undertook 65 interviews with 39 women. Access to and experience of general practitioner (GP) care was affected by perceived welcomeness, decisions around disclosure, and consultation experiences related to medication prescription. Participants reported that they were not as welcome as other patients, welcome could be conditional on not disclosing SUDs or only requesting unrelated healthcare, and GPs did not always differentiate between past and current drug use. Participants perceived difficulty finding general practices where the potential benefit of disclosing SUDs outweighed the risks of stigmatized reactions and lack of GP skills and interest. Participants did not always recognize that care beyond physical health could occur in general practice. The pejorative implications of labelling patients as "doctor shoppers" were challenged by participants, as they considered it could be necessary to attend multiple GPs to find a welcoming practice. People with histories of SUDs do not uniformly experience welcomeness in general practice, perpetuating poor engagement in healthcare and poor outcomes related to SUDs. Programmes targeting prescription drug misuse through general practice should also promote welcomeness for people with SUDs.

The Development and Implementation of a Culturally Safe Survey for Measuring Knowledge, Attitudes and Values around FASD and Alcohol Use During Pregnancy in a Remote Australian Aboriginal Community Setting

Fetal Alcohol Spectrum Disorder (FASD) describes a lifelong neurodevelopmental disability caused by prenatal alcohol exposure that has a devastating impact on individuals, families and communities. The prevalence of FASD is high in some Indigenous communities around the World and the only active case ascertainment prevalence study conducted in Australia found a rate of 19.44 per 100 children in the remote Fitzroy Valley region of Western Australia. Following this study community led FASD prevention activities were implemented under the Marulu (“Worth Nurturing”) Strategy in the Fitzroy Valley. A Knowledge, Attitudes and Practices survey was designed to assess the impact of the prevention campaign and gather more information about knowledge of the dangers of alcohol use in pregnancy and FASD, local attitudes, and health behaviours both around alcohol and more generally including where residents received their health information. Best practices recommend including local Aboriginal people in the development of surveys and aiming to achieve cultural security. Actions taken included consulting with local health workers during survey development, translation of key sections of the survey into the local Kimberley Kriol, and performing the surveys with the assistance of Aboriginal Community Researchers. The full survey is made available in this paper. The surveys were conducted with 200 community members during August 2015 and 203 in October 2015. Surveys were updated between the first and second waves based on learnings during implementation. Key implementation details around weather and timing, gender/kinship issues, group participation, declining participation, problematic questions and responses to the survey are described. Cultural safety was achieved but further steps could be taken to ensure future cultural security by embedding cultural safety protocols in the survey and further community consultation.

Laboratory-Based Surveillance of Clostridium difficile Infection in Australian Health Care and Community Settings, 2013 to 2018.

In the early 2000s, a binary toxin (CDT)-producing strain of Clostridium difficile, ribotype 027 (RT027), caused extensive outbreaks of diarrheal disease in North America and Europe. This strain has not become established in Australia, and there is a markedly different repertoire of circulating strains there compared to other regions of the world. The C. difficile Antimicrobial Resistance Surveillance (CDARS) study is a nationwide longitudinal surveillance study of C. difficile infection (CDI) in Australia. Here, we describe the molecular epidemiology of CDI in Australian health care and community settings over the first 5 years of the study, 2013 to 2018. Between 2013 and 2018, 10 diagnostic microbiology laboratories from five states in Australia participated in the CDARS study. From each of five states, one private (representing community) and one public (representing hospitals) laboratory submitted isolates of C. difficile or PCR-positive stool samples during two collection periods per year, February-March (summer/autumn) and August-September (winter/spring). C. difficile was characterized by toxin gene profiling and ribotyping. A total of 1,523 isolates of C. difficile were studied. PCR ribotyping yielded 203 different RTs, the most prevalent being RT014/020 (n = 449; 29.5%). The epidemic CDT+ RT027 (n = 2) and RT078 (n = 6), and the recently described RT251 (n = 10) and RT244 (n = 6) were not common, while RT126 (n = 17) was the most prevalent CDT+ type. A heterogeneous C. difficile population was identified. C. difficile RT014/020 was the most prevalent type found in humans with CDI. Continued surveillance of CDI in Australia remains critical for the detection of emerging strain lineages.

Caring for Mum On Country: Exploring the transferability of the Birthing On Country RISE framework in a remote multilingual Northern Australian context

Background & problemBirthing On Country (BOC) is an international movement for returning childbirth to First Nations peoples and their communities. The RISE Framework was developed to guide evidence-based BOC implementation but has not yet been tested in a remote Australian community setting. AimTo test the transferability and acceptability of the RISE Framework in a remote multilingual setting in a Yolŋu (First Nations) community in Northern Australia. MethodsWorking in partnership with one remote Yolŋu community, we used a decolonising participatory action research (D-PAR) approach to begin co-designing services and test the acceptability of the RISE Framework. A three-phased transferability process was developed: Warming the ground; Co-Interpreting; and Acceptability Testing. FindingsThe RISE Framework was customized to the local Yolŋu context and called ‘Caring for Mum on Country’. It was articulated in two languages: Djambarrpuyŋu and English. We successfully used it to guide discussions at a community gathering privileging the voices of senior women to inform the design of local maternity services. DiscussionUsing the D-PAR approach, the RISE Framework was readily adapatable to this complex, remote and multilingual setting. It resonated with the Yolŋu community and proved useful for identifying current limitations of existing maternity services and importantly facilitating the design of Yolŋu centred strength-based maternity services. ConclusionThe RISE Framework, combined with our transformative methodology, offers a promising approach to guiding complex interventions for returning services to First Nations communities in diverse contexts. Testing in other settings will further contribute to growing an evidence-base for BOC service planning and implementation.

Factors to consider during the implementation of nutrition and physical activity trials for people with psychotic illness into an Australian community setting

BackgroundResearch in lifestyle interventions focusing on nutrition and physical activity in people living with psychotic illness, highlights anthropometric and metabolic benefits of these interventions. However, little is known about potential factors to consider during implementation into real-world contexts. Community-managed organisations (CMOs) that provide services for people with mental illness, offer an ideal implementation context for lifestyle interventions. Successful translation of lifestyle interventions into CMOs may be achieved though considering the factors associated with program access and delivery in these settings. This study primarily aimed to identify the factors that affect program access in a local CMO from the perspective of consumers and staff. The secondary aim was to describe the elements that impact on program delivery from the perspective of staff.MethodsThirteen semi-structured interviews were conducted with 6 consumers and 7 staff in a CMO in regional Australia. Topics explored in interviews were based on implementation concepts identified in the “Integrated Promoting Action on Research Implementation in Health Systems” (i-PARIHS) knowledge translation framework. Thematic data analysis was conducted using Nvivo software.ResultsEmergent themes on issues that influenced program access were (1) consumer financial status, domestic responsibilities, and health; (2) the design and delivery of programs; (3) structure and practices of the organisation; (4) attitude, skills and effort of staff involved in program delivery; and (5) social connections and stigma experienced by consumers during program access. Moreover, staff perceptions on elements that impacted program delivery highlighted themes on consumer attendance and interest in prospective programs, availability and restrictions to the use of funding, as well as the organisational structure and practices.ConclusionsThe factors affecting program access and delivery can generally be managed or planned for during the design of lifestyle interventions and subsequent translation into the CMO context. However, resolution of issues related to consumer financial status and health requires the collaboration of various government sectors for system-wide solutions.

The epidemiology of heart failure in the general Australian community - study of heart failure in the Australian primary carE setting (SHAPE): methods

BackgroundThere is a paucity of information on the epidemiology of heart failure (HF) in Australia. The Study of Heart failure in the Australian Primary carE setting (SHAPE) study aims to estimate the prevalence and annual incidence of HF in the general Australian community and to describe the demographic and key clinical profile of Australians with HF.MethodsWe undertook a retrospective cohort study based on analysis of non-identifiable medical records of adult patients cared for at 43 general practices between 1 July 2013 and 30 June 2018. Data were extracted from coded (diagnosis, pathology and prescription fields) and uncoded fields (clinical notes) in the medical records. The latter searches of free text looked for common synonyms relevant to HF. The population was stratified into three groups based on a hierarchy of selection criteria: (1) definite HF, (2) probable HF and (3) possible HF. The prevalence and annual incidence of HF were calculated, along with 95% confidence intervals.ResultsThe practices provided care to 2.3 million individual patients over the five-year study period, of whom 1.93 million were adults and 1.12 million were regular patients. Of these patients 15,468 were classified as having ‘definite HF’, 4751 as having ‘probable HF’ and 33,556 as having ‘possible HF’. A further 39,247 were identified as having an aetiological condition associated with HF.A formal HF diagnosis, HF terms recorded as text in the notes and HF-specific medication were the most common methods to identify ‘definite’ HF patients. Typical signs and symptoms in combination with a diuretic prescription was the most common method to identify ‘probable HF’ patients. The majority of ‘possible’ HF patients were identified by the presence of 2 or more of the typical signs or symptoms. Dyspnoea was the commonest recorded symptom and an elevated jugular venous pressure the commonest recorded sign.ConclusionsThis novel approach to undertaking retrospective research of primary care data successfully analysed a combination of coded and uncoded data from the electronic medical records of patients routinely managed in the GP setting. SHAPE is the first real-world study of the epidemiology of HF in the general Australian community setting.

Evaluation of the acceptability and clinical utility of an Arabic-language mindfulness CD in an Australian community setting.

The cultural, linguistic, and religious diversity of Australia's population presents challenges for mental health service delivery. Arabic-speaking communities in Australia underutilise mental health services despite high levels of trauma and psychological distress. Clinicians who work with this population lack linguistically and culturally appropriate clinical resources. The aim of this study was to explore the acceptability and clinical utility of a Mindfulness Skills CD translated into formal Arabic. The 70 participants were Arabic-speaking adults, mostly Lebanese-born Muslim women, who enrolled in a 5-week mindfulness program using the CD and agreed to follow-up at 12 weeks. Both recruitment and data collection were undertaken by a female project officer who is a widely respected member of the Arabic community in south-east Sydney. Compliance with the program protocol was high and all but 4 participants continued to use the CD beyond the 5 weeks. Overall, participants reported that mindfulness techniques fitted well with their way of life and were compatible with their cultural and religious practices. Most found mindfulness complementary to their regular reflective prayer. Using the Mindfulness Skills CD was associated with statistically significant reductions in psychological distress as measured by the Kessler Scale (K10) and the Depression, Anxiety, and Stress Scale (DASS21) postprogram (K10; DASS21 Depression and Stress subscales) and at follow-up (all measures). The evaluation showed that the Arabic Mindfulness Skills CD is an effective and culturally appropriate mental health resource for this population group. This low-cost, easily distributed resource is suitable for use in individual self-management and as an adjunct to primary and specialist mental health care.

How soon do allied health professionals lose confidence to perform EBP activities? A cross-sectional study.

To explore if there is a relationship between allied health professionals' confidence to perform a range of evidence-based practice (EBP) activities and the time since they graduated from their entry-level degree and the presence of postgraduate qualifications. Cross-sectional survey. Allied health professionals from two Australian public metropolitan health services, including acute, subacute, and community settings. Sample of 288 (n=288) allied health professionals from the disciplines of physiotherapy, occupational therapy, speech pathology, social work, dietetics/nutrition, and other. Cross-sectional survey including 12 questions measuring respondents' confidence to conduct a range of EBP activities. Allied health professionals begin to lose confidence related to EBP activities within the first 5years of clinical practice, particularly for those activities involving critical analysis of published studies. Respondents with postgraduate qualifications were more likely to report greater confidence with EBP activities, suggesting that higher level qualifications protect against the effect of degradation of EBP skills and confidence over time. Allied health professionals' confidence to perform EBP activities degrades over time, particularly for those individuals with no postgraduate qualifications. Registration and accreditation bodies along with allied health professional employers should explore potential strategies to preserve and enhance EBP skills, confidence, and behaviours.

Recommendations for Enhancing the Implementation and Utility of Shared Digital Health Records in Rural Australian Communities.

Internationally, shared digital health records are becoming an important addition to improving contemporary healthcare provision. In 2012, Australia launched its version of a shared digital health record, My Health Record, but enrolment is slow and there remain challenges in its practical implementation. Further, people living with complex and chronic conditions in rural and remote communities often experience challenges in obtaining equitable access to contemporary healthcare provision, including eHealth services. This paper reports on research that explored the experience of and engagement with My Health Record, in a rural Australian community setting. Based on the key research findings, recommendations are presented for improving national roll out of My Health Record. The findings highlight, to understand and engage vulnerable communities and support their adoption and use of shared digital health records, there is a need to move away from traditional models of healthcare delivery toward person-centred care delivered from a digital complex adaptive systems perspective.

Information is not knowledge: Cooking and eating as skilled practice in Australian obesity education

This paper examines the relationship between obesity, knowledge and education in a South Australian community setting. In public health circles and public understandings it is commonly assumed that obesity is the result of lack of knowledge about the right things to eat or how to take care of oneself. It is thought that education will fill this knowledge lacunae and most public health campaigns have education as the main platform of information dissemination to enact behavioural change. Based on long‐standing ethnographic work in a community targeted as obesogenic, I explore the limits of mainstream nutrition education, and how constructing people as having deficit knowledge has the unwarranted effect of implying ignorance. Key to the analysis is Ingold's articulation of different modalities of education, one dominant mode which inducts people into rules and regulations of already pre‐formed knowledge, and another which sees education as learning that goes on in the doing of everyday environments.

Identifying Current Practices and Supports in Behaviour Management Following ABI in South Australian Community Settings: A Delphi Study

Objectives: To consider the strategies currently used by family care givers to manage challenging behaviour in the community following ABI, and to identify what supports are available that support family care givers in addressing this issue.Research design: Delphi study.Methods: Service providers (n = 8) and family care givers (n = 3) completed a three-round Delphi process with the aim of reaching consensus (75% agreement) regarding research objectives. Round 1 consisted of an open-ended questionnaire in which items were identified; these items were then rated in Round 2 and 3 using a Likert scale. Statistical aggregation then allowed for quantitative analysis.Results: The findings suggest a number of behaviour management approaches are being used by family care givers, including basic antecedent strategies, agreeing with the person's demands, and medication. Consensus was reached that only two services in SA provide specific support to family care givers regarding behaviour management in the community: Families4Families Inc. (a peer support network) and Private Specialists (e.g., [neuro]psychologists and [neuro]psychiatrists).Conclusions: Findings emphasise the need for more specialised services specific to educating and supporting family care givers in the management of challenging behaviours following ABI. These services should be accessible, centralised, and easy for family care givers to navigate.

An Approach for Enhancing Adoption, Use and Utility of Shared Digital Health Records in Rural Australian Communities.

Internationally, shared digital health records are considered an important addition to improving modern health care provision. Australia launched its version, My Health Record (MyHR), in 2012 but has experienced low adoption and challenges in practical implementation and evaluation. Individuals living with complex and chronic conditions in rural and remote communities often experience challenges in obtaining equitable access to health care provision. They are also supposed to face additional barriers to adopting and using eHealth services. This paper reports on research investigating adoption, use and utility of MyHR, in rural remote Australian community settings. Based on this research an approach for improving national roll out of MyHR is presented. The approach highlights a means to understand and engage communities with complex care needs, to support their adoption and use of digital tools. It also draws attention to holistic methods for evaluating and assessing impact at individual, community and health care provision levels.

Progress in the care of familial hypercholesterolaemia: 2016.

Familial hypercholesterolaemia (FH) is the most common autosomal dominant condition, with a prevalence of between one in 200 and one in 350 people in the general population. Untreated FH is associated with premature atherosclerotic cardiovascular disease (CVD). The prevalence of homozygous or compound heterozygous FH is now considered to be about one in 300 000 people. Treating children with FH reduces progression of atherosclerotic CVD and future CVD events. Most individuals with FH are undiagnosed, which together with the recent frequency data in the population and in individuals with premature coronary disease creates a public health challenge and mandates a key role for primary care. Childhood is the optimal period for detecting FH, since low-density lipoprotein cholesterol (LDL-c) concentrations better differentiate affected from unaffected individuals. In an Australian community setting, over 70% of adults with an LDL-c level ≥ 6.5 mmol/L have clinical FH; of these, 30% have a detectable mutation. The community laboratory has an important role in identifying FH, with interpretive comments leading to additional reductions in LDL-c concentrations, and a phone call from the pathologist to the general practitioner improving detection of cases. Cascade screening using DNA testing is cost-effective and acceptable to screenees. Next generation genetic sequencing may differentiate people with polygenic hypercholesterolaemia alone from those with FH. Smoking, hypertension, elevated lipoprotein(a) levels, chronic kidney disease and diabetes are additional atherosclerotic CVD risk factors in FH. Equations for assessing absolute risk of CVD in primary prevention underestimate risk in FH. The adult LDL-c goal is a greater than 50% reduction in LDL-c levels, followed by a target of <2.5 mmol/L, or <1.8 mmol/L for individuals with CVD or other CVD risk factors. Proprotein convertase subtilisin/kexin type 9 inhibitors significantly reduce LDL-c and lipoprotein(a) levels in people with FH. Registries are essential for improving the care of people with FH.