Australian Genomics: Outcomes of a 5-year national program to accelerate the integration of genomics in healthcare.

Australian Genomics is a national collaborative partnership of more than 100 organizations piloting a whole-of-system approach to integrating genomics into healthcare, based on federation principles. In the first five years of operation, Australian Genomics has evaluated the outcomes of genomic testing in more than 5,200 individuals across 19 rare disease and cancer flagship studies. Comprehensive analyses of the health economic, policy, ethical, legal, implementation and workforce implications of incorporating genomics in the Australian context have informed evidence-based change in policy and practice, resulting in national government funding and equity of access for a range of genomic tests. Simultaneously, Australian Genomics has built national skills, infrastructure, policy, and data resources to enable effective data sharing to drive discovery research and support improvements in clinical genomic delivery.

The Australian Genomics Mitochondrial Flagship: A National Program Delivering Mitochondrial Diagnoses.

PURPOSE: Families living with mitochondrial diseases (MD) often endure prolonged diagnostic journeys and invasive testing, yet many remain without a molecular diagnosis. The Australian Genomics Mitochondrial flagship, comprising clinicians, diagnostic, and research scientists, conducted a prospective national study to identify the diagnostic utility of singleton genomic sequencing using blood samples. METHODS: 140 children and adults living with suspected MD were recruited using modified Nijmegen criteria (MNC) and randomized to either exome + mtDNA sequencing (ES+mtDNAseq) or genome sequencing (GS). RESULTS: Diagnostic yield was 55% (n=77) with variants in nuclear (n=37) and mtDNA (n=18) MD genes, as well as phenocopy genes (n=22). A nuclear gene etiology was identified in 77% of diagnoses, irrespective of disease onset. Diagnostic rates were higher in pediatric-onset (71%) than adult-onset (31%) cases, and comparable in children with non-European (78%) versus European (67%) ancestry. For children, higher MNC scores correlated with increased diagnostic yield and fewer diagnoses in phenocopy genes. Additionally, three adult patients had a mtDNA deletion discovered in skeletal muscle that was not initially identified in blood. CONCLUSION: Genomic sequencing from blood can simplify the diagnostic pathway for individuals living with suspected MD, especially those with childhood onset diseases and high MNC scores.

Group-based trajectories of potentially preventable hospitalisations among older adults after a hip fracture.

Key predictors of three trajectory group membership of potentially preventable hospitalisations were age, the number of comorbidities, the presence of chronic obstructive pulmonary disease and congestive heart failure, and frailty risk at the occurrence of hip fracture. These predictors of their trajectory group could be used in targeting prevention strategies. PURPOSE: Although older adults with hip fracture have a higher risk of multiple readmissions after index hospitalisation, little is known about potentially preventable hospitalisations (PPH) after discharge. This study examined group-based trajectories of PPH during a five-year period after a hip fracture among older adults and identified factors predictive of their trajectory group membership. METHODS: This retrospective cohort study was conducted using linked hospitalisation and mortality data in New South Wales, Australia, between 2013 and 2021. Patients aged ≥ 65 years who were admitted after a hip fracture and discharged between 2014 and 2016 were identified. Group-based trajectory models were derived based on the number of subsequent PPH following the index hospitalisation. Multinominal logistic regression examined factors predictive of trajectory group membership. RESULTS: Three PPH trajectory groups were revealed among 17,591 patients: no PPH (89.5%), low PPH (10.0%), and high PPH (0.4%). Key predictors of PPH trajectory group membership were age, number of comorbidities, dementia, chronic obstructive pulmonary disease (COPD), congestive heart failure (CHF), frailty risk, place of incident, surgery, rehabilitation, and length of hospital stay. The high PPH had a higher proportion of patients with ≥ 2 comorbidities (OR: 1.86, 95% confidence interval (CI): 1.04-3.32) and COPD (OR: 2.97, 95%CIs: 1.76-5.04) than the low PPH, and the low and high PPHs were more likely to have CHF and high frailty risk as well as ≥ 2 comorbidities and COPD than the no PPH. CONCLUSIONS: Identifying trajectories of PPH after a hip fracture and factors predictive of trajectory group membership could be used to target strategies to reduce multiple readmissions.

Four System Enablers of Large-System Transformation in Health Care: A Mixed Methods Realist Evaluation.

Policy Points The implementation of large-scale health care interventions relies on a shared vision, commitment to change, coordination across sites, and a spanning of siloed knowledge. Enablers of the system should include building an authorizing environment; providing relevant, meaningful, transparent, and timely data; designating and distributing leadership and decision making; and fostering the emergence of a learning culture. Attention to these four enablers can set up a positive feedback loop to foster positive change that can protect against the loss of key staff, the presence of lone disruptors, and the enervating effects of uncertainty. CONTEXT: Large-scale transformative initiatives have the potential to improve the quality, efficiency, and safety of health care. However, change is expensive, complex, and difficult to implement and sustain. This paper advances system enablers, which will help to guide large-scale transformation in health care systems. METHODS: A realist study of the implementation of a value-based health care program between 2017 and 2021 was undertaken in every public hospital (n = 221) in New South Wales (NSW), Australia. Four data sources were used to elucidate initial program theories beginning with a set of literature reviews, a program document review, and informal discussions with key stakeholders. Semistructured interviews were then conducted with 56 stakeholders to confirm, refute, or refine the theories. A retroductive analysis produced a series of context-mechanism-outcome (CMO) statements. Next, the CMOs were validated with three health care quality expert panels (n = 51). Synthesized data were interrogated to distill the overarching system enablers. FINDINGS: Forty-two CMO statements from the eight initial program theory areas were developed, refined, and validated. Four system enablers were identified: (1) build an authorizing environment; (2) provide relevant, authentic, timely, and meaningful data; (3) designate and distribute leadership and decision making; and (4) support the emergence of a learning culture. The system enablers provide a nuanced understanding of large-system transformation that illustrates when, for whom, and in what circumstances large-system transformation worked well or worked poorly. CONCLUSIONS: System enablers offer nuanced guidance for the implementation of large-scale health care interventions. The four enablers may be portable to similar contexts and provide the empirical basis for an implementation model of large-system value-based health care initiatives. With concerted application, these findings can pave the way not just for a better understanding of greater or lesser success in intervening in health care settings but ultimately to contribute higher quality, higher value, and safer care.

Operationalisation of health equity principles in physiotherapy hospital triage policies.

BACKGROUND: Healthcare triage policies are vital for allocating limited resources fairly and equitably. Despite extensive studies of healthcare equity, consensus on the applied definition of equity in triage remains elusive. This study aimed to investigate how the principles of equity are operationalised in Australian hospital physiotherapy triage tools to guide resource distribution. METHODS: A retrospective, qualitative content analysis of 13 triage policies from 10 hospitals across Australia was conducted. Triage policies from both inpatient and outpatient settings were sourced. Data were coded deductively using the five discrete domains of the multi-faceted operational definition of health equity posited by Lane et al. (2017): 1) point of equalisation in the health service supply/access/outcome chain, 2) need or potential to benefit, 3) groupings of equalisation, 4) caveats to equalisation, 5) close enough is good enough. Descriptive summative statistics were used to analyse and present the frequency of reported equity domains. RESULTS: Within the included triage tools, four out of five domains of equity were evident in the included documents to guide decision making. Allocation based on perceived patient need and overall health outcomes were the central guiding principles across both inpatient and outpatient settings. Equal provision of service relative to patient need and reducing wait times were also prioritised. However, explicit inclusion of certain equity domains such as discrimination, ensuring equal capability to be healthy and other patient factors was limited. CONCLUSIONS: Physiotherapy triage policies consider various domains of equity to guide resource allocation decisions. Policymakers and service providers can use the insights gained from this study to review the application and operationalisation of equity principles within their healthcare systems through mechanisms such as patient triage tools.

Factors affecting 12-month unplanned readmissions for chronic obstructive pulmonary disease patients: the effect of mental disorders in an Australian cohort.

BACKGROUND: Many individuals with chronic obstructive pulmonary disease (COPD) experience frequent hospitalization and readmissions, which is burdensome on the health system. This study aims to investigate factors associated with unplanned readmissions and mortality following a COPD-related hospitalization over a 12-month period in Australia, focusing on mental disorders and accounting for the acute phase of the COVID-19 pandemic. METHODS: A retrospective cohort study using linked hospitalization and mortality records identified individuals aged ≥40 years who had at least one hospital admission with a principal diagnosis of COPD between 2014 and 2020 in New South Wales, Australia. A semi-competing risk analysis was conducted to examine factors associated with unplanned readmission and mortality. RESULTS: Adults with a mental disorder diagnosis, specifically anxiety, had a higher risk of 12-month unplanned readmission. Individuals with anxiety and dementia also had a higher risk of mortality pre- and post-unplanned readmission. Individuals who were admitted during the acute phase of the COVID-19 pandemic period had lower risk of unplanned readmission, but higher risk of mortality without unplanned readmission. CONCLUSION: Interventions aimed at reducing admissions should consider adults living with mental disorders such as anxiety or dementia to improve healthcare delivery and health outcomes for individuals living with COPD.

Resilient health care performance in the real world: fixing problems that never happened.

BACKGROUND: Staff in health systems everywhere have exhibited flexibility and a capacity for improvisations during, and in response to, the COVID-19 pandemic. Looking to other examples of such resilient behaviours outside of those induced by the pandemic is instructive for those involved with researching or understanding change, or making health systems improvements. METHODS: Here, we synthesise and then assess the value of eight case studies of in situ resilient performance from Canada, Sweden, Japan, Belgium, the United Kingdom, Norway, the United States and Brazil. The cases are divided into four categories: responsiveness to a crisis; adaptiveness over time; local adoption in accommodating to a top down, national policy change; and the consequential outcomes of an intervention. RESULTS: The cases illuminate the resourcefulness of translational and social researchers in examining such behaviours and practices. More than that, they also foreground the ingenuity and adaptive capacity of staff on-the-ground who continually anticipate, respond and adapt to make systems work and provide continuous care in the face of many challenges, including resource deficiencies, policy misalignments, and new technologies, policies and procedures that need to be integrated into local workflows. Front line clinicians make care systems work, pre-empting issues and sorting out problems before they occur or as they arise. CONCLUSIONS: A key lesson amongst a range of findings is that, rather than focusing on shiny new tools of change (checklists, frameworks, policy mandates), it is much more insightful and satisfying to deeply apprehend care at the sharp end, where clinicians deliver care to patients, understanding how everyday work is executed. This, rather than the Health Ministry, the Boardroom, or the Management Consultant's office, is where and how change is being enabled, and where street level actors solve problems, thwart issues in advance, and constantly avoid pitfalls.

Implementation of large, multi-site hospital interventions: a realist evaluation of strategies for developing capability.

BACKGROUND: This study presents guidelines for implementation distilled from the findings of a realist evaluation. The setting was local health districts in New South Wales, Australia that implemented three clinical improvement initiatives as part of a state-wide program. We focussed on implementation strategies designed to develop health professionals' capability to deliver value-based care initiatives for multisite programs. Capability, which increases implementers' ability to cope with unexpected scenarios is key to managing change. METHODS: We used a mixed methods realist evaluation which tested and refined program theories elucidating the complex dynamic between context (C), mechanism (M) and outcome (O) to determine what works, for whom, under what circumstances. Data was drawn from program documents, a realist synthesis, informal discussions with implementation designers, and interviews with 10 key informants (out of 37 identified) from seven sites. Data analysis employed a retroductive approach to interrogate the causal factors identified as contributors to outcomes. RESULTS: CMO statements were refined for four initial program theories: Making it Relevant- where participation in activities was increased when targeted to the needs of the staff; Investment in Quality Improvement- where engagement in capability development was enhanced when it was valued by all levels of the organisation; Turnover and Capability Loss- where the effects of staff turnover were mitigated; and Community-Wide Priority- where there was a strategy of spanning sites. From these data five guiding principles for implementers were distilled: (1) Involve all levels of the health system to effectively implement large-scale capability development, (2) Design capability development activities in a way that supports a learning culture, (3) Plan capability development activities with staff turnover in mind, (4) Increased capability should be distributed across teams to avoid bottlenecks in workflows and the risk of losing key staff, (5) Foster cross-site collaboration to focus effort, reduce variation in practice and promote greater cohesion in patient care. CONCLUSIONS: A key implementation strategy for interventions to standardise high quality practice is development of clinical capability. We illustrate how leadership support, attention to staff turnover patterns, and making activities relevant to current issues, can lead to an emergent learning culture.

Consensus-Building Processes for Implementing Perioperative Care Pathways in Common Elective Surgeries: A Systematic Review.

AIMS: To identify and understand the different approaches to local consensus discussions that have been used to implement perioperative pathways for common elective surgeries. DESIGN: Systematic review. DATA SOURCES: Five databases (MEDLINE, CINAHL, EMBASE, Web of Science and the Cochrane Library) were searched electronically for literature published between 1 January 2000 and 6 April 2023. METHODS: Two reviewers independently screened studies for inclusion and assessed quality. Data were extracted using a structured extraction tool. A narrative synthesis was undertaken to identify and categorise the core elements of local consensus discussions reported. Data were synthesised into process models for undertaking local consensus discussions. RESULTS: The initial search returned 1159 articles after duplicates were removed. Following title and abstract screening, 135 articles underwent full-text review. A total of 63 articles met the inclusion criteria. Reporting of local consensus discussions varied substantially across the included studies. Four elements were consistently reported, which together define a structured process for undertaking local consensus discussions. CONCLUSIONS: Local consensus discussions are a common implementation strategy used to reduce unwarranted clinical variation in surgical care. Several models for undertaking local consensus discussions and their implementation are presented. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Advancing our understanding of consensus building processes in perioperative pathway development could be significantly improved by refining reporting standards to include criteria for achieving consensus and assessing implementation fidelity, alongside advocating for a systematic approach to employing consensus discussions in hospitals. IMPACT: These findings contribute to recognised gaps in the literature, including how decisions are commonly made in the design and implementation of perioperative pathways, furthering our understanding of the meaning of consensus processes that can be used by clinicians undertaking improvement initiatives. REPORTING METHOD: This review adheres to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. No patient or public contribution. TRIAL REGISTRATION: CRD42023413817.

Standardizing variation: Scaling up clinical genomics in Australia.

PURPOSE: Clinical genomics demands close interaction of physicians, laboratory scientists, and genetic professionals. Taking genomics to scale requires an understanding of the underlying processes from the perspective of nongenetic physicians who are new to the field. We identified components of the processes amenable to adaptation when scaling up clinical genomics. METHODS: Semistructured interviews informed by the Theoretical Domains Framework with nongenetic physicians, who were using clinical genomics in practice, were guided by an annotated process map with 7 steps following the patient's journey. Findings from the individual maps were synthesized into an overview process map and a series of individual maps by common location and specialty. Interviews were analyzed using the Theoretical Domains Framework. RESULTS: In total, 16 nongenetic physicians (eg, nephrologists, immunologists) participated, generating 1 overview and 10 individual process maps. Sixteen common steps were identified across clinical specialties and locations, with variations over 9 steps. We report the potential for standardization across these 9 steps. CONCLUSION: When scaling up complex interventions, it is essential to identify steps where variation can be accommodated. With these results we show how process mapping can be used to identify steps where variation is acceptable during scale up to accommodate adaptation to local context, allowing for the inevitable evolution of factors influencing ongoing implementation and sustainability.

Using a theory informed approach to design, execute, and evaluate implementation strategies to support offering reproductive genetic carrier screening in Australia.

BACKGROUND: Health care professionals play a central role in offering reproductive genetic carrier screening but face challenges when integrating the offer into practice. The aim of this study was to design, execute, and evaluate theory-informed implementation strategies to support health care professionals in offering carrier screening. METHODS: An exploratory multi-method approach was systematically employed based on the Theoretical Domain Framework (TDF). Implementation strategies were designed by aligning TDF barriers reported by health care professionals involved in a large carrier screening study, to behaviour change techniques combined with study genetic counsellors' experiential knowledge. The strategies were trialled with a subset of health care professionals and evaluated against controls, using findings from questionnaires and interviews with healthcare professionals. The primary outcome measure was the number of couples who initiated enrolment. RESULTS: Health care professionals (n = 151) reported barriers in the TDF Domains of skills, e.g., lack of practice in offering screening, and challenges of environmental context and resources, e.g., lack of time, which informed the design of a skills video and a waiting room poster using the TDF-behaviour change technique linking tool. Following implementation, (Skills video n = 29 vs control n = 31 and Poster n = 46 vs control n = 34) TDF barrier scores decreased across all groups and little change was observed in the primary outcome measure. The skills video, though welcomed by health care professionals, was reportedly too long at seven minutes. The waiting room poster was seen as easily implementable. CONCLUSIONS: As carrier screening moves towards mainstream healthcare, health care professionals report barriers to offering screening. To meet their needs, developing and testing experiential and theory-informed strategies that acknowledge contextual factors are essential.

Systems resilience in the implementation of a large-scale suicide prevention intervention: a qualitative study using a multilevel theoretical approach.

BACKGROUND: Resilience, the capacity to adapt and respond to challenges and disturbances, is now considered fundamental to understanding how healthcare systems maintain required levels of performance across varying conditions. Limited research has examined healthcare resilience in the context of implementing healthcare improvement programs across multiple system levels, particularly within community-based mental health settings or systems. In this study, we explored resilient characteristics across varying system levels (individual, team, management) during the implementation of a large-scale community-based suicide prevention intervention. METHODS: Semi-structured interviews (n=53) were conducted with coordinating teams from the four intervention regions and the central implementation management team. Data were audio-recorded, transcribed, and imported into NVivo for analysis. A thematic analysis of eight transcripts involving thirteen key personnel was conducted using a deductive approach to identify characteristics of resilience across multiple system levels and an inductive approach to uncover both impediments to, and strategies that supported, resilient performance during the implementation of the suicide prevention intervention. RESULTS: Numerous impediments to resilient performance were identified (e.g., complexity of the intervention, and incompatible goals and priorities between system levels). Consistent with the adopted theoretical framework, indicators of resilient performance relating to anticipation, sensemaking, adaptation and tradeoffs were identified at multiple system levels. At each of the system levels, distinctive strategies were identified that promoted resilience. At the individual and team levels, several key strategies were used by the project coordinators to promote resilience, such as building relationships and networks and carefully prioritising available resources. At the management level, strategies included teambuilding, collaborative learning, building relationships with external stakeholders, monitoring progress and providing feedback. The results also suggested that resilience at one level can shape resilience at other levels in complex ways; most notably we identified that there can be a downside to resilience, with negative consequences including stress and burnout, among individuals enacting resilience. CONCLUSIONS: The importance of considering resilience from a multilevel systems perspective, as well as implications for theory and future research, are discussed.

The rise of resilient healthcare research during COVID-19: scoping review of empirical research.

BACKGROUND: The COVID-19 pandemic has presented many multi-faceted challenges to the maintenance of service quality and safety, highlighting the need for resilient and responsive healthcare systems more than ever before. This review examined empirical investigations of Resilient Health Care (RHC) in response to the COVID-19 pandemic with the aim to: identify key areas of research; synthesise findings on capacities that develop RHC across system levels (micro, meso, macro); and identify reported adverse consequences of the effort of maintaining system performance on system agents (healthcare workers, patients). METHODS: Three academic databases were searched (Medline, EMBASE, Scopus) from 1st January 2020 to 30th August 2022 using keywords pertaining to: systems resilience and related concepts; healthcare and healthcare settings; and COVID-19. Capacities that developed and enhanced systems resilience were synthesised using a hybrid inductive-deductive thematic analysis. RESULTS: Fifty publications were included in this review. Consistent with previous research, studies from high-income countries and the use of qualitative methods within the context of hospitals, dominated the included studies. However, promising developments have been made, with an emergence of studies conducted at the macro-system level, including the development of quantitative tools and indicator-based modelling approaches, and the increased involvement of low- and middle-income countries in research (LMIC). Concordant with previous research, eight key resilience capacities were identified that can support, develop or enhance resilient performance, namely: structure, alignment, coordination, learning, involvement, risk awareness, leadership, and communication. The need for healthcare workers to constantly learn and make adaptations, however, had potentially adverse physical and emotional consequences for healthcare workers, in addition to adverse effects on routine patient care. CONCLUSIONS: This review identified an upsurge in new empirical studies on health system resilience associated with COVID-19. The pandemic provided a unique opportunity to examine RHC in practice, and uncovered emerging new evidence on RHC theory and system factors that contribute to resilient performance at micro, meso and macro levels. These findings will enable leaders and other stakeholders to strengthen health system resilience when responding to future challenges and unexpected events.

What factors are considered in hospital funding models? A review of the literature on health services funding in organisation for economic co-operation and development countries.

BACKGROUND: One of the most difficult challenges in healthcare involves equitable allocation of resources. Our review aimed to identify international funding models in Organisation for Economic Co-operation and Development (OECD) countries for government-funded public hospitals and evidence underpinning their efficacy, via review of the peer-reviewed and grey literature. METHODS: Ovid-Medline, Ovid Embase, Scopus, and PubMed were searched for peer-reviewed literature. Advanced Google searches and targeted hand searches of relevant organisational websites identified grey literature. Inclusion criteria were: English language, published between 2011 and 2022, and that the article: (1) focused on healthcare funding; (2) reported on or identified specific factors, indexes, algorithms or formulae associated with healthcare funding; and (3) referred to countries that are members of the OECD, excluding the United States (US). RESULTS: For peer-reviewed literature 1189 abstracts and 35 full-texts were reviewed; six articles met the inclusion criteria. For grey literature, 2996 titles or abstracts and 37 full-texts were reviewed; five articles met the inclusion criteria. Healthcare funding arrangements employed in 15 OECD countries (Australia, Belgium, Canada, Finland, France, Germany, Israel, Italy, the Netherlands, New Zealand, Norway, Spain, Sweden, Switzerland, and the United Kingdom [UK; specifically, England, Scotland, Wales and Northern Ireland]) were identified, but papers reported population-based funding arrangements for specific regions rather than hospital-specific models. CONCLUSIONS: While some models adjusted for deprivation and ethnicity factors, none of the identified documents reported on health systems that adjusted funding allocation for social determinants such as health literacy levels.

Patient safety and quality care for children with intellectual disability: An action research study.

Children with intellectual disability experience significant challenges in accessing and receiving high-quality healthcare leading to poorer health outcomes and negative patient experiences. Families of these children often report a need for healthcare staff to better understand, communicate, and collaborate for better care while staff acknowledge a lack of training. To address this, we utilised an action research framework with a pre- and post- survey to evaluate an integrated continuing professional development and quality improvement program combining strategies from education, behavioural psychology and quality improvement that was delivered in two departments within a tertiary children's Hospital in Metropolitan Sydney in 2019-2020. Parents reported noticeable changes in the clinical practice of staff, and staff acknowledged and attributed their shift in behaviour to raising awareness and discussions around necessary adaptations. The program demonstrates a novel method for knowledge translation to practice and systems improvements.

Making implementation science more real.

Implementation science in healthcare aims to understand how to get evidence into practice. Once this is achieved in one setting, it becomes increasingly difficult to replicate elsewhere. The problem is often attributed to differences in context that influence how and whether implementation strategies work. We argue that realist research paradigms provide a useful framework to express the effect of contextual factors within implementation strategy causal processes. Realist studies are theory-driven evaluations that focus on understanding how and why interventions work under different circumstances. They consider the interaction between contextual circumstances, theoretical mechanisms of change and the outcomes they produce, to arrive at explanations of conditional causality (i.e., what tends to work, for whom, under what circumstances). This Commentary provides example applications using preliminary findings from a large realist implementation study of system-wide value-based healthcare initiatives in New South Wales, Australia. If applied judiciously, realist implementation studies may represent a sound approach to help optimise delivery of the right care in the right setting and at the right time.

An exploratory survey study of disorder and its association with safety culture in four hospitals.

BACKGROUND: Signs of disorder in neighbourhoods (e.g., litter, graffiti) are thought to influence the behaviour of residents, potentially leading to violations of rules and petty criminal behaviour. Recently, these premises have been applied to the hospital context, with physical and social disorder found to have a negative association with patient safety. Building on these results, the present study investigates whether physical and social disorder differ between hospitals, and their relationship to safety culture. METHODS: We conducted a cross sectional survey with Likert-style and open response questions administered in four Australian hospitals. All staff were invited to participate in the pilot study from May to September 2018. An analysis of variance (ANOVA) was used to examine differences in disorder by hospital, and hierarchical linear regression assessed the relationship of physical and social disorder to key aspects of safety culture (safety climate, teamwork climate). Open responses were analysed using thematic analysis to elaborate on manifestations of hospital disorder. RESULTS: There were 415 survey respondents. Significant differences were found in perceptions of physical disorder across the four hospitals. There were no significant differences between hospitals in levels of social disorder. Social disorder had a significant negative relationship with safety and teamwork climate, and physical disorder significantly predicted a poorer teamwork climate. We identified five themes relevant to physical disorder and four for social disorder from participants' open responses; the preponderance of these themes across hospitals supported quantitative results. CONCLUSIONS: Findings indicate that physical and social disorder are important to consider in attempting to holistically understand a hospital's safety culture. Interventions that target aspects of physical and social disorder in a hospital may hold value in improving safety culture and patient safety.

Mobile Apps for People With Rare Diseases: Review and Quality Assessment Using Mobile App Rating Scale.

BACKGROUND: Mobile apps are becoming increasingly popular, with 5.70 million apps available in early 2021. Smartphones can provide portable and convenient access to health apps. Here, we consider apps for people with one of the estimated 7000 rare conditions, which are defined as having an incidence of <1 in 2000. The needs of people with rare conditions are known to be different from those of people with more common conditions. The former may be socially isolated (not knowing anyone else who has the condition) and may not be able to find reliable information about the disorder. OBJECTIVE: The aim of this review is to search for apps developed specifically for people diagnosed with a rare disease and to assess them for quality using the Mobile App Rating Scale (MARS). We examine features that address 6 identified needs of people with a rare disorder and make recommendations for future developers. METHODS: Google Play Store (Android) and Apple App Store (iOS) were searched for relevant health-related apps specifically for rare diseases. The search included the names of 10 rare disease groups. App quality was determined using MARS, assessing app engagement, functionality, aesthetics, and information. RESULTS: We found 29 relevant apps (from a total of 2272) addressing 14 rare diseases or disease groups. The most common rare conditions addressed were cystic fibrosis (n=6), hemophilia (n=5), and thalassemia (n=5). The most common app features were web-based information and symptom trackers. The mean MARS score was 3.44 (SD 0.84). Lowest scores were for engagement. CONCLUSIONS: Most apps provided factual and visual information, providing tools for self-monitoring and resources to help improve interactions during health consultations. App origin and quality varied greatly. Developers are recommended to consider ways to make appropriate apps more easily identifiable to consumers, to always include high-quality information, improve engagement, provide qualitative evaluations of the app, and include consumers and clinicians in the design.

The Voices of Stakeholders Involved in Precision Medicine: The Co-Design and Evaluation of Qualitative Indicators of Intervention Acceptability, Fidelity and Context in PRecISion Medicine for Children With Cancer in Australia.

We report a novel approach of amalgamating implementation outcomes of acceptability and fidelity alongside context as a new way of qualitatively evaluating implementation outcomes and context of a precision medicine intervention. A rapid qualitative online proforma was co-designed with stakeholders and sent to a purposive sample of healthcare professionals involved in an early-phase clinical trial intervention. Data were analysed using Framework Analysis. A total of 24 out of 68 proformas were returned. Although some participants raised concerns about drug medication access issues, the main intervention was well accepted and understood across professional groups. Comprehension was enhanced through exposure to specialist multidisciplinary meeting arrangements. In conclusion, a rapid data collection tool and framework are now available to assess readily measurable, qualitative indicators of acceptability, fidelity of receipt and contextual fit within the dynamic precision medicine context.

Responding to safe care: Healthcare staff experiences caring for a child with intellectual disability in hospital. Implications for practice and training.

BACKGROUND: Children with intellectual disability are vulnerable to adverse events in hospital due to limited staff skills and system safeguards. METHOD: A systematic review of the literature explored healthcare staff (HCS) experiences in providing care for children and young persons with intellectual disability in hospital using thematic analysis. RESULTS: Eleven of the 735 publications extracted identified the following themes: distress, communication, partnerships, identification, training and education and optimising care. Consistent findings suggest that HCS feel unskilled in providing care for the child with intellectual disability in hospital settings. HCS recognised the role of parents as experts of their child but also feel unsettled when challenged by them. Skills in communicating with the child, developing partnerships with parents, having identification systems to plan for reasonable adjustments was key to improving care. CONCLUSIONS: Organisational advocacy, practical skills training in identification, reasonable adjustments and improved attitudes are important for HCS to provide safe and quality care.