Measuring Healthcare Experiences Among People With Intellectual Disability: A Rapid Evidence Synthesis of Tools And Methods.

OBJECTIVES: Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. METHODS: Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. RESULTS: A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. CONCLUSIONS: Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality.

Approaches for enhancing patient-reported experience measurement with ethnically diverse communities: a rapid evidence synthesis.

BACKGROUND: Patient-reported experience measures (PREMs) are used to drive and evaluate unit and organisational-level healthcare improvement, but also at a population level, these measures can be key indicators of healthcare quality. Current evidence indicates that ethnically diverse communities frequently experience poorer care quality and outcomes, with PREMs data required from this population to direct service improvement efforts. This review synthesises evidence of the methods and approaches used to promote participation in PREMs among ethnically diverse populations. METHODS: A rapid evidence appraisal (REA) methodology was utilised to identify the disparate literature on this topic. A search strategy was developed and applied to three major electronic databases in July 2022 (Medline; PsycINFO and CINAHL), in addition to websites of health agencies in Organisation for Economic Co-operation and Development countries via grey literature searches. A narrative evidence synthesis was undertaken to address the review question. RESULTS: The review resulted in 97 included studies, comprised 86 articles from electronic database searches and 11 articles from the grey literature. Data extraction and synthesis identified five strategies used in PREM instruments and processes to enhance participation among ethnically diverse communities. Strategies applied sought to better inform communities about PREMs, to create accessible PREMs instruments, to support PREMs completion and to include culturally relevant topics. Several methods were used, predominantly drawing upon bicultural workers, translation, and community outreach to access and support communities at one or more stages of design or administration of PREMs. Limited evidence was available of the effectiveness of the identified methods and strategies. PREMs topics of trust, cultural responsiveness, care navigation and coordination were identified as pertinent to and frequently explored with this population. CONCLUSIONS: The findings provide a basis for a maturity model that may guide change to increase participation of ethnically diverse communities in PREMs. In the short-medium term, health systems and services must be able to recognise and respond to cultural and linguistic diversity in the population when applying existing PREMs. In the longer-term, by working in collaboration with ethnically diverse communities, systems and services may co-create adapted or novel PREMs that tackle the factors that currently inhibit uptake and completion among ethnically diverse communities.

Engaging With Health Consumers in Scientific Conferences-As Partners not Bystanders.

INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.

The silent threat: investigating sleep disturbances in hospitalized patients.

Sleep disruptions in the hospital setting can have adverse effects on patient safety and well-being, leading to complications like delirium and prolonged recovery. This study aimed to comprehensively assess the factors influencing sleep disturbances in hospital wards, with a comparison of the sleep quality of patients staying in single rooms to those in shared rooms. A mixed-methods approach was used to examine patient-reported sleep quality and sleep disruption factors, in conjunction with objective noise measurements, across seven inpatient wards at an acute tertiary public hospital in Sydney, Australia. The most disruptive factor to sleep in the hospital was noise, ranked as 'very disruptive' by 20% of patients, followed by acute health conditions (11%) and nursing interventions (10%). Patients in shared rooms experienced the most disturbed sleep, with 51% reporting 'poor' or 'very poor' sleep quality. In contrast, only 17% of the patients in single rooms reported the same. Notably, sound levels in shared rooms surpassed 100 dB, highlighting the potential for significant sleep disturbances in shared patient accommodation settings. The results of this study provide a comprehensive overview of the sleep-related challenges faced by patients in hospital, particularly those staying in shared rooms. The insights from this study offer guidance for targeted healthcare improvements to minimize disruptions and enhance the quality of sleep for hospitalized patients.

Potentially burdensome care at the end-of-life for cancer decedents: a retrospective population-wide study.

BACKGROUND: Variation persists in the quality of end-of-life-care (EOLC) for people with cancer. This study aims to describe the characteristics of, and examine factors associated with, indicators of potentially burdensome care provided in hospital, and use of hospital services in the last 12 months of life for people who had a death from cancer. METHOD: A population-based retrospective cohort study of people aged ≥ 20 years who died with a cancer-related cause of death during 2014-2019 in New South Wales, Australia using linked hospital, cancer registry and mortality records. Ten indicators of potentially burdensome care were examined. Multinominal logistic regression examined predictors of a composite measure of potentially burdensome care, consisting of > 1 ED presentation or > 1 hospital admission or ≥ 1 ICU admission within 30 days of death, or died in acute care. RESULTS: Of the 80,005 cancer-related deaths, 86.9% were hospitalised in the 12 months prior to death. Fifteen percent had > 1 ED presentation, 9.9% had > 1 hospital admission, 8.6% spent ≥ 14 days in hospital, 3.6% had ≥ 1 intensive care unit admission, and 1.2% received mechanical ventilation on ≥ 1 occasion in the last 30 days of life. Seventeen percent died in acute care. The potentially burdensome care composite measure identified 20.0% had 1 indicator, and 10.9% had ≥ 2 indicators of potentially burdensome care. Compared to having no indicators of potentially burdensome care, people who smoked, lived in rural areas, were most socially economically disadvantaged, and had their last admission in a private hospital were more likely to experience potentially burdensome care. Older people (≥ 55 years), females, people with 1 or ≥ 2 Charlson comorbidities, people with neurological cancers, and people who died in 2018-2019 were less likely to experience potentially burdensome care. Compared to people with head and neck cancer, people with all cancer types (except breast and neurological) were more likely to experience ≥ 2 indicators of potentially burdensome care versus none. CONCLUSION: This study shows the challenge of delivering health services at end-of-life. Opportunities to address potentially burdensome EOLC could involve taking a person-centric approach to integrate oncology and palliative care around individual needs and preferences.

Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol.

BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.

From Detractors to Promoters: A comparative analysis of patient experience drivers across Net Promoter Score subcategories.

BACKGROUND: The utilization of patient experience surveying by health care institutions has become increasingly prevalent, yet its effectiveness in promoting quality improvement remains uncertain. To enhance the utility of patient feedback, the examination of free-text comments may provide valuable insights to guide patient experience strategy. AIMS: This study aims to explore the utility of free-text comments and identify key differences for patient experience drivers between Net Promoter Score (NPS) subcategories of Detractors, Passives, and Promoters. METHODS: Evaluation and classification of comments was conducted using the eight Picker Principles of Person Centred Care, with descriptive analysis of patient comments performed on the NPS data. RESULTS: Analysis of patient NPS comments can be classified into three key drivers: "feeling well-treated" (for Detractors), "feeling comfortable" (for Passives), and "feeling valued" (for Promoters). Specifically, Detractor comments provided the most comprehensive and detailed feedback to guide patient experience improvement activities. CONCLUSION: This study highlights differences between NPS subcategories, particularly regarding aspects of safety, comfort, and feeling valued. Comments from Detractor respondents may be especially useful for guiding quality improvements due to increased specificity and insights. These results also emphasize the essential nature of empathy and compassionate interactions between patients and clinicians to achieve the highest level of patient satisfaction and experience.

Reboot coaching programme: a mixed-methods evaluation assessing resilience, confidence, burnout and depression in medical students.

BACKGROUND: Poor mental health in medical students is a global concern. Effective interventions are required, which are tailored towards the training-related stressors medical students experience. The Reboot coaching programme is an online, tailored intervention based on cognitive-behavioural principles. AIMS: To evaluate whether the Reboot coaching programme tailored for medical students was feasible and associated with improvements in mental health outcome indicators. METHODS: Medical students participated in two group online workshops and a one-to-one coaching call with a Reboot-trained licensed psychological therapist. Participants provided data at: baseline (T1), post-workshops (T2), post-coaching call (T3) and 4-month follow-up (T4). Outcome measures included resilience, confidence, burnout and depression. Feedback was provided regarding the workshops at T2. RESULTS: 115 participants (93/80.9% women; mage = 23.9; SD = 2.8) were recruited, 83 (72.2%) completed all intervention elements and 82 (71.3%) provided T4 data, surpassing recruitment and retention targets. There were significant improvements following baseline in resilience (ps < .001), confidence (ps < .001), burnout (ps < .001) and depression (ps ≤ .001). Most participants agreed the workshops imparted useful skills (n = 92; 99%) and would recommend Reboot to others (n = 89; 95.6%). CONCLUSIONS: Existing interventions have produced mixed results regarding their effectiveness in improving medical students' mental health. Reboot is a feasible intervention in this group which is associated with improvements in resilience, confidence, burnout and depression. Further controlled studies of Reboot are now needed.

The HUSH Project: Using codesign to reduce sleep disruptions for patients in hospital.

BACKGROUND: Poor quality sleep in hospitals may be problematic for patients, negatively impacting their recovery and wellbeing. This project aimed to investigate the effectiveness of codesign in addressing key issues affecting sleep disruption in the healthcare setting. METHODS: Codesign with patients, staff and consumer representatives was conducted in an acute metropolitan tertiary public hospital in Sydney, Australia. Through a four-stage process, a multimodal intervention to address and reduce the impact of sleep disruptions among hospital inpatients was created. Pre- and post-intervention evaluation was used to determine changes in patient-reported sleep disruption. RESULTS: 'The HUSH Project' (Help Us Support Healing) intervention resulted from the codesign process, which included the provision of HUSH Sleep Packs (with earplugs, eye masks and herbal tea), patient information resources, and ward-based Sleep Champions. Survey data from 210 patients revealed a statistically significant decrease in patient-reported noise disturbances for patients in shared rooms following the 4-week intervention period of the HUSH program. CONCLUSION: The HUSH Project demonstrated that a novel multimodal intervention may be valuable in reducing sleep disruption in hospitals. These findings also indicate the benefits of using codesign methodology to support improvement projects that seek to enhance patient experiences of care. PATIENT OR PUBLIC CONTRIBUTION: This project utilised codesign methodology, which involved significant contributions from patients and consumer representatives, from research conceptualisation into intervention design, implementation and project evaluation.

Is there an association between out-of-pocket hospital costs, quality and care outcomes? A systematic review of contemporary evidence.

BACKGROUND: Out of pocket (OOP) costs vary substantially by health condition, procedure, provider, and service location. Evidence of whether this variation is associated with indicators of healthcare quality and/or health outcomes is lacking. METHODS: The current review aimed to explore whether higher OOP costs translate into better healthcare quality and outcomes for patients in inpatient settings. The review also aimed to identify the population and contextual-level determinants of inpatient out-of-pocket costs. A systematic electronic search of five databases: Scopus, Medline, Psych Info, CINAHL and Embase was conducted between January 2000 to October 2022. Study procedures and reporting complied with PRISMA guidelines. The protocol is available at PROSPERO (CRD42022320763). FINDINGS: A total of nine studies were included in the final review. A variety of quality and health outcomes were examined in the included studies across a range of patient groups and specialities. The scant evidence available and substantial heterogeneity created challenges in establishing the nature of association between OOP costs and healthcare quality and outcomes. Nonetheless, the most consistent finding was no significant association between OOP cost and inpatient quality of care and outcomes. INTERPRETATION: The review findings overall suggest no beneficial effect of higher OOP costs on inpatient quality of care and health outcomes. Further work is needed to elucidate the determinants of OOP hospital costs. FUNDING: This study was funded by Medibank Better Health Foundation.

Critical care nursing workforce in crisis: A discussion paper examining contributing factors, the impact of the COVID-19 pandemic and potential solutions.

AIMS AND OBJECTIVES: The critical care nursing workforce is in crisis, with one-third of critical care nurses worldwide intending to leave their roles. This paper aimed to examine the problem from a wellbeing perspective, offering implications for research, and potential solutions for organisations. DESIGN: Discursive/Position paper. METHOD: The discussion is based on the nursing and wellbeing literature. It is guided by the authors' collaborative expertise as both clinicians and researchers. Data were drawn from nursing and wellbeing peer-reviewed literature, such as reviews and empirical studies, national surveys and government and thinktank publications/reports. RESULTS: Critical care nurses have been disproportionately affected by the COVID-19 pandemic with studies consistently showing critical care nurses to have the worst psychological outcomes on wellbeing measures, including depression, burnout and post-traumatic stress disorder (PTSD). These findings are not only concerning for the mental wellbeing of critical care nurses, they also raise significant issues for healthcare systems/organisations: poor wellbeing, increased burnout and PTSD are directly linked with critical care nurses intending to leave the profession. Thus, the wellbeing of critical care nurses must urgently be supported. Resilience has been identified as a protective mechanism against the development of PTSD and burnout, thus offering evidence-based interventions that address resilience and turnover have much to offer in tackling the workforce crisis. However, turnover data must be collected by studies evaluating resilience interventions, to further support their evidence base. Organisations cannot solely rely on the efficacy of these interventions to address their workforce crisis but must concomitantly engage in organisational change. CONCLUSIONS: We conclude that critical care nurses are in urgent need of preventative, evidence-based wellbeing interventions, and make suggestions for research and practice.

Value-based public health: Moving beyond value-based health care to support a wellbeing economy.

While value-based health care (VBHC) is transforming Australia's health system, with its focus on patient-centred care and outcomes, it cannot transform Australia's health without policy action to address the social determinants of health. Australia is moving towards a wellbeing economy, but governments have not been explicit in the methods by which the health system will contribute to the development of a wellbeing economy at a macro level. It is also unclear how governments will ensure that approaches to valuing wellbeing will complement current health care innovations in defining and evaluating value in relation to health outcomes. To address this gap, we present a value-based public health (VBPH) framework to conceptualise a health-informed model to expand current thinking about defining, delivering and evaluating the value of population health and wellbeing. The framework provides a critical and innovative approach beyond VBHC for improving population health and wellbeing outcomes, in alignment with principles and measures being put forth in early examples of governments using wellbeing economy policies. In VBPH, the focus is on ensuring value in interventions to improve population outcomes. VBPH offers an approach for joined-up policy across government, using Health in All Policies for multi-sector public health interventions in response to population needs, across full cycles of policy development, implementation and evaluation. It promotes social return on investment methods to measure outcomes that matter to diverse stakeholders within and across communities. VBPH also requires cost estimation from a whole of government perspective, across complete cycles and stages of policy.

Inequities in quality and safety outcomes for hospitalized children with intellectual disability.

AIM: To investigate if there are inequities in quality and safety outcomes for children with intellectual disability admitted to two tertiary paediatric hospitals. METHOD: A cross-sectional study of 1367 admissions for 1018 randomly selected patients admitted for more than 23 hours to one of two tertiary children's hospitals in Sydney, Australia (1st January-31st December 2017). Electronic medical records were manually interrogated to identify children with intellectual disability (including developmental delay). Data extracted included patient demographics, length of stay, number of admissions, and reported clinical incidents. RESULTS: In total, 12.3% (n=125) of children admitted during the study period had intellectual disability, which represented 13.9% (n=190) of admissions. Sex and age at admission in children with and without intellectual disability were similar: 83 (43.7%) vs 507 (43.1%) females and 107 (56.3%) vs 670 (56.9%) males, p=0.875; median age 3 years (0-18y) vs 4 years (0-18y), p=0.122. Children with intellectual disability had significantly greater median length of stay (100.5h vs 79h, p<0.001) and cost of admission (A$11 596.38 vs A$8497.96) than their peers (p=0.001). Children with intellectual disability had more admissions with at least one incident compared to children without intellectual disability (14.7% vs 9.7%); this was not statistically significant (p=0.06). INTERPRETATION: Children with intellectual disability experience inequitable quality and safety outcomes in hospital. Engaging children and families in clinical incident reporting may enhance understanding of safety risks for children with intellectual disability in hospital.

Collective leadership to improve professional practice, healthcare outcomes and staff well-being.

BACKGROUND: Collective leadership is strongly advocated by international stakeholders as a key approach for health service delivery, as a response to increasingly complex forms of organisation defined by rapid changes in health technology, professionalisation and growing specialisation. Inadequate leadership weakens health systems and can contribute to adverse events, including refusal to prioritise and implement safety recommendations consistently, and resistance to addressing staff burnout. Globally, increases in life expectancy and the number of people living with multiple long-term conditions contribute to greater complexity of healthcare systems. Such a complex environment requires the contribution and leadership of multiple professionals sharing viewpoints and knowledge.  OBJECTIVES: To assess the effects of collective leadership for healthcare providers on professional practice, healthcare outcomes and staff well-being, when compared with usual centralised leadership approaches. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, five other databases and two trials registers on 5 January 2021. We also searched grey literature, checked references for additional citations and contacted study authors to identify additional studies. We did not apply any limits on language. SELECTION CRITERIA: Two groups of two authors independently reviewed, screened and selected studies for inclusion; the principal author was part of both groups to ensure consistency. We included randomised controlled trials (RCTs) that compared collective leadership interventions with usual centralised leadership or no intervention. DATA COLLECTION AND ANALYSIS: Three groups of two authors independently extracted data from the included studies and evaluated study quality; the principal author took part in all groups. We followed standard methodological procedures expected by Cochrane and the Effective Practice and Organisation of Care (EPOC) Group. We used the GRADE approach to assess the certainty of the evidence. MAIN RESULTS: We identified three randomised trials for inclusion in our synthesis. All studies were conducted in acute care inpatient settings; the country settings were Canada, Iran and the USA. A total of 955 participants were included across all the studies. There was considerable variation in participants, interventions and measures for quantifying outcomes. We were only able to complete a meta-analysis for one outcome (leadership) and completed a narrative synthesis for other outcomes. We judged all studies as having an unclear risk of bias overall. Collective leadership interventions probably improve leadership (3 RCTs, 955 participants). Collective leadership may improve team performance (1 RCT, 164 participants). We are uncertain about the effect of collective leadership on clinical performance (1 RCT, 60 participants). We are uncertain about the intervention effect on healthcare outcomes, including health status (inpatient mortality) (1 RCT, 60 participants). Collective leadership may slightly improve staff well-being by reducing work-related stress (1 RCT, 164 participants). We identified no direct evidence concerning burnout and psychological symptoms. We are uncertain of the intervention effects on unintended consequences, specifically on staff absence (1 RCT, 60 participants).  AUTHORS' CONCLUSIONS: Collective leadership involves multiple professionals sharing viewpoints and knowledge with the potential to influence positively the quality of care and staff well-being. Our confidence in the effects of collective leadership interventions on professional practice, healthcare outcomes and staff well-being is moderate in leadership outcomes, low in team performance and work-related stress, and very low for clinical performance, inpatient mortality and staff absence outcomes. The evidence was of moderate, low and very low certainty due to risk of bias and imprecision, meaning future evidence may change our interpretation of the results. There is a need for more high-quality studies in this area, with consistent reporting of leadership, team performance, clinical performance, health status and staff well-being outcomes.

The ultimate question? Evaluating the use of Net Promoter Score in healthcare: A systematic review.

BACKGROUND: Patient experience is a complex phenomenon that presents challenges for appropriate and effective measurement. With the lack of a standardized measurement approach, efforts have been made to simplify the evaluation and reporting of patient experience by using single-item measures, such as the Net Promoter Score (NPS). Although NPS is widely used in many countries, there has been little research to validate its effectiveness and value in the healthcare setting. The aim of this study was to systematically evaluate the evidence that is available about the application of NPS in healthcare settings. METHODS: Studies were identified using words and synonyms that relate to NPS, which was applied to five electronic databases: Medline, CINAHL, Proquest, Business Journal Premium, and Scopus. Titles and abstracts between January 2005 and September 2020 were screened for relevance, with the inclusion of quantitative and qualitative studies in the healthcare setting that evaluated the use of NPS to measure patient experience. RESULTS: Twelve studies met the inclusion criteria. Four studies identified benefits associated with using NPS, such as ease of use, high completion rates and being well-understood by a range of patients. Three studies questioned the usefulness of the NPS recommendation question in healthcare settings, particularly when respondents are unable to select their service provider. The free-text comments section, which provides additional detail and contextual cues, was viewed positively by patients and staff in 4 of 12 studies. According to these studies, NPS can be influenced by a wide range of variables, such as age, condition/disease, intervention and cultural variation; therefore, caution should be taken when using NPS for comparisons. Four studies concluded that NPS adds minimal value to healthcare improvement. CONCLUSION: The literature suggests that many of the proposed benefits of using NPS are not supported by research. NPS may not be sufficient as a stand-alone metric and may be better used in conjunction with a larger survey. NPS may be more suited for use in certain healthcare settings, for example, where patients have a choice of provider. Staff attitudes towards the use of NPS for patient surveying are mixed. More research is needed to validate the use of NPS as a primary metric of patient experience. PATIENT OR PUBLIC CONTRIBUTION: Consumer representatives were provided with the research findings and their feedback was sought about the study. Consumers commented that they found the results to be useful and felt that this study highlighted important considerations when NPS data is used to evaluate patient experience.

Using consumer engagement strategies to improve healthcare safety for young people: An exploration of the relevance and suitability of current approaches.

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.

Improving primary health care quality for refugees and asylum seekers: A systematic review of interventional approaches.

BACKGROUND: It has been widely acknowledged that refugees are at risk of poorer health outcomes, spanning mental health and general well-being. A common point of access to health care for the migrant population is via the primary health care network in the country of resettlement. This review aims to synthesize the evidence of primary health care interventions to improve the quality of health care provided to refugees and asylum seekers. METHODS: A systematic review was undertaken, and 55 articles were included in the final review. The Preferred Reporting Items for Systematic Reviews was used to guide the reporting of the review, and articles were managed using a reference-management software (Covidence). The findings were analysed using a narrative empirical synthesis. A quality assessment was conducted for all the studies included. RESULTS: The interventions within the broad primary care setting could be organized into four categories, that is, those that focused on developing the skills of individual refugees/asylum seekers and their families; skills of primary health care workers; system and/or service integration models and structures; and lastly, interventions enhancing communication services. Promoting effective health care delivery for refugees, asylum seekers and their families is a complex challenge faced by primary care professionals, the patients themselves and the communication between them. CONCLUSION: This review highlights the innovative interventions in primary care promoting refugee health. Primary care interventions mostly focused on upskilling doctors, with a paucity of research exploring the involvement of other health care members. Further research can explore the involvement of interprofessional team members in providing effective refugee/migrant health. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was explored in terms of interventions designed to improve health care delivery for the humanitarian migrant population, that is, specifically refugees and asylum seekers.

Assessing the environment for engagement in health services: The Audit for Consumer Engagement (ACE) tool.

INTRODUCTION: Although it is widely accepted that the physical environment can impact health quality and care outcomes, its impact on consumer engagement with health services has not been examined. Currently, no tools exist that assess the opportunities for consumer engagement offered within the physical environment. We aimed to develop and validate an environmental audit tool to assist health services and researchers to assess the extent to which the physical environment in health services creates and supports opportunities for consumer engagement. METHOD: An iterative, team-based approach in partnership with diverse stakeholders was used to develop the Audit for Consumer Engagement (ACE) tool. A four-stage process consisting of desktop review, concept clarification, identification of domains and validation was implemented. The tool was validated in one cancer service via face and content validation and inter-rater reliability was also assessed. RESULTS: The ACE tool was demonstrated to comprise four main domains (access and signage information; resources for consumers; resources to support diversity; and consumer engagement events or activities) measured with 17 items. Face and content validity was achieved, and preliminary reliability analysis indicated substantial agreement between the two researchers for all four domains with an average of 86% agreement. CONCLUSION: The ACE is a novel tool that is practical, relevant and reliable, and developed in partnership with consumers and health service providers. The tool can be used by health service providers, researchers and consumer agency groups to assess opportunities for consumer engagement offered within the physical environment of cancer services. The ACE tool has the potential to be used as a guide for enhancing consumer engagement opportunities and for research purposes. Further evidence about the validity of the tool is required, including criterion-related validity and utility in other health settings. PATIENT/PUBLIC CONTRIBUTION: This project is part of a wider 'CanEngage' project that includes a consumer investigator and is supported by a consumer advisory group. This study was completed in active partnership with members of a consumer advisory group from diverse backgrounds. Feedback was sought from the members throughout the development process of the tool with findings discussed with the CanEngage group members in scheduled meetings.

Variation in ovarian cancer care in Australia: An analysis of patterns of care in diagnosis and initial treatment in New South Wales.

OBJECTIVE: Ovarian cancer has the highest mortality of all gynaecological cancers. This study aimed to identify the extent to which women across New South Wales experienced variation in their care in diagnosis and initial treatment for ovarian cancer against the national optimal care pathway for ovarian cancer. METHOD: Clinical audit methodology was utilised to explore variations for women with primary ovarian cancer; 171 eligible cases were identified through by the NSW Cancer Registry for the period of 1 March 2017 to 28 February 2018. RESULTS: Limited variation was detected with 86% of women being reviewed by a specialist gynaecological oncology multidisciplinary team; 54% of women received their first treatment within 28 days of their first specialist appointment, 66% of women having their first surgery completed by a gynaecological oncologist and 45% of women received their first treatment in a specialist gynaecological oncology hospital. CONCLUSION: Deviation from effective ovarian cancer care is apparent particularly in the location and timeliness of first treatment, with implications for the quality of care received and care outcomes. Understanding factors that contribute to variation is critical to ensure optimal and appropriate ovarian cancer care and to tackle systemic barriers to the provision of effective care.

Supporting efficiency improvement in public health systems: a rapid evidence synthesis.

BACKGROUND: Public health systems internationally are under pressure to meet increasing demand for healthcare in the context of increasing financial resource constraint. There is therefore a need to maximise health outcomes achieved with public healthcare expenditure. This paper aims to establish and synthesize the contemporary evidence base for approaches taken at a system management level to improve efficiency. METHODS: Rapid Evidence Assessment (REA) methodology was employed. A search strategy was developed and applied (PUBMED, MEDLINE) returning 5,377 unique titles. 172 full-text articles were screened to determine relevance with 82 publications included in the final review. Data regarding country, study design, key findings and approaches to efficiency improvement were extracted and a narrative synthesis produced. Publications covering health systems from developed countries were included. RESULTS: Identified study designs included policy reviews, qualitative reviews, mixed methods reviews, systematic reviews, literature reviews, retrospective analyses, scoping reviews, narrative papers, regression analyses and opinion papers. While findings revealed no comprehensive frameworks for system-wide efficiency improvement, a range of specific centrally led improvement approaches were identified. Elements associated with success in current approaches included dedicated central functions to drive system-wide efficiency improvement, managing efficiency in tandem with quality and value, and inclusive stakeholder engagement. CONCLUSIONS: The requirement for public health systems to improve efficiency is likely to continue to increase. Reactive cost-cutting measures and short-term initiatives aimed only at reducing expenditure are unlikely to deliver sustainable efficiency improvement. By providing dedicated central system-wide efficiency improvement support, public health system management entities can deliver improved financial, health service and stakeholder outcomes.