Expert Reference Group Research Articles

Effectiveness of First Dose of COVID-19 Vaccines Against Hospital Admissions in Scotland: National Prospective Cohort Study of 5.4 Million People

Background: The BNT162b2 mRNA (Pfizer-BioNTech) and ChAdOx1 (Oxford-AstraZeneca) COVID-19 vaccines have demonstrated high efficacy against infection in phase 3 clinical trials and are now being used in national vaccination programmes in the UK and several other countries. There is an urgent need to study the ‘real-world’ effects of these vaccines. The aim of our study was to estimate the effectiveness of the first dose of these COVID-19 vaccines in preventing hospital admissions.Methods: We conducted a prospective cohort study using the Early Pandemic Evaluation and Enhanced Surveillance of COVID-19 (EAVE II) database comprising of linked vaccination, primary care, Real-Time Polymerase Chain Reaction (RT-PCR) testing, hospitalisation and mortality records for 5.4 million people in Scotland (covering ~99% of population). A time-dependent Cox model and Poisson regression models were fitted to estimate effectiveness against COVID-19 related hospitalisation (defined as 1- Adjusted Hazard Ratio) following the first dose of vaccine.Findings: The first dose of the BNT162b2 vaccine was associated with a vaccine effect of 85% (95% confidence interval [CI] 76 to 91) for COVID-19 related hospitalisation at 28-34 days post-vaccination. Vaccine effect at the same time interval for the ChAdOx1 vaccine was 94% (95% CI 73 to 99). Results of combined vaccine effect for prevention of COVID-19 related hospitalisation were comparable when restricting the analysis to those aged ≥80 years (81%; 95% CI 65 to 90 at 28-34 days post-vaccination).Interpretation: A single dose of the BNT162b2 mRNA and ChAdOx1 vaccines resulted in substantial reductions in the risk of COVID-19 related hospitalisation in Scotland.Funding: UK Research and Innovation (Medical Research Council); Research and Innovation Industrial Strategy Challenge Fund; Health Data Research UK.Conflict of Interest: AS is a member of the Scottish Government Chief Medical Officer’s COVID-19Advisory Group and the New and Emerging Respiratory Virus Threats (NERVTAG) Risk Stratification Subgroup. CRS declares funding from the MRC, NIHR, CSO and New Zealand Ministry for Business, Innovation and Employment and Health Research Council during the conduct of this study. SVK is co-chair of the Scottish Government’s Expert Reference Group on COVID-19 and ethnicity, is a member of the Scientific Advisory Group on Emergencies (SAGE) subgroup on ethnicity and acknowledges funding from a NRS Senior Clinical Fellowship, MRC and CSO. All other authors report no conflicts of interest.Ethical Approval: Approvals were obtained from the National Research Ethics Service Committee, Southeast Scotland 02 (reference number: 12/SS/0201) and Public Benefit and Privacy Panel for Health and Social Care (reference number: 1920-0279).

Getting it right for under-fives: An eight-point plan for an early years strategy

Our briefing paper calling for a co-ordinated strategy for early years from conception to five has been published in order to take advantage of the launch of a Government review into the Early Years. We have begun engaging with Andrea Leadsom’s office, who is leading this work on the Early Years for the government, and have received positive feedback.The publication of this document marks the final output from the 2019 Senate Expert Reference Group.

Development of a self-report scale to assess children’s perceived physical literacy

ABSTRACT Background: The construct of physical literacy is gaining traction internationally and yet measurement of physical literacy is in its infancy. This paper describes the development of a pictorial child report scale of perceived physical literacy based on the comprehensive Australian Physical Literacy Framework, which includes 30 elements within four domains (physical, psychological, cognitive and social). Methods: An expert reference committee with academic and industry representatives from physical education, sport and education was formed to provide input to each stage of the process. Qualitative research methods were used to (a) determine a character that was gender neutral, not representative of a particular race or ethnicity and appealing to children, and (b) the content (i.e. relationship between item images, wording and format with the intended construct) and response processes (i.e. interpretation of items) of the Physical Literacy in Children Questionnaire (PL-C Quest). A total of 17 children aged 4–12 years were interviewed as part of the study. Results: A ‘bunny’ character was preferred by children. Overall, children interpreted most images as intended by the researchers, and, in many cases, without having to hear the words that went with the images. Some of the image scenarios were amended and redrawn according to the suggestions received from children and the expert reference group. Discussion: This study has provided qualitative evidence based on the content of the PL-C Quest elements and domains, on the ways respondents understand, and interpret the items. This is the first step towards the development and testing of a pictorial instrument to comprehensively measure children’s self-perceived physical literacy.

Developing a Theory-Informed Smartphone App for Early Psychosis: Learning Points From a Multidisciplinary Collaboration.

Background: Actissist is a smartphone app designed to deliver an intervention grounded in cognitive behavior therapy for early psychosis. Actissist was developed by a multidisciplinary team of academics, clinicians, experts by experience and software engineers. Actissist has been tested in two trials, the first a proof-of-concept trial where Actissist was safe, acceptable and feasible, the second, a powered randomized controlled trial.Objective: This article describes how our multidisciplinary team designed and developed Actissist. This article describes: (i) how Actissist was informed by initial qualitative interviews and focus groups and an expert reference group; (ii) refinements made to the app based on ongoing user feedback; (iii) successes and challenges encountered; and (iv) learning points and recommendations for involving stakeholders in digital health interventions.Methods: Expert reference group meetings informed the development of Actissist and design of subsequent trials, which included individuals with lived experience of psychosis, clinicians, academics, computer scientists and software engineers. Person-centered stakeholder involvement was promoted using focus groups and qualitative interviews prior to the development of the app, which informed version one of Actissist. Interviews were carried out with participants who had used Actissist. Two further versions of Actissist were developed following additional rounds of testing.Results: Multidisciplinary working throughout the Actissist project led to the development, inclusion and improvement of the app design and content. These changes and features included non-directive and compassionate content, co-designed recovery videos, relaxation exercises, psychoeducation material, ability to “favorite” areas of the app that users found helpful, and goal-setting. Challenges to collaborative working included discrepancies between what stakeholders want and what is technically possible to deliver, resource pressures, trying to deliver desired features within the boundaries of fundamental trial design considerations, and power imbalances associated with multidisciplinary working.Conclusions: The involvement of stakeholders in the design and development and delivery of Actissist has been fundamental to our development approach. Through this collaborative process, we have identified different perspectives and ideas that would have not been generated by the research team alone.Clinical Trial Registrations: Proof-of-concept trial: http://www.isrctn.com/ISRCTN34966555Fully-powered randomized controlled trial: https://www.isrctn.com/ISRCTN76986679

A Checklist for Implementing Rural Pathways to Train, Develop and Support Health Workers in Low and Middle-Income Countries.

Background: There is an urgent need to scale up global action on rural workforce development. This World Health Organization-sponsored research aimed to develop a Rural Pathways Checklist. Its purpose was to guide the practical implementation of rural workforce training, development, and support strategies in low and middle-income countries (LMICs). It was intended for any LMICs, stakeholder, health worker, context, or health problem.Method: Multi-methods involved: (1) focus group concept testing; (2) a policy analysis; (3) a scoping review of LMIC literature; (4) consultation with a global Expert Reference Group and; (5) field-testing over an 18-month period.Results: The Checklist included eight actions for implementing rural pathways in LMICs: establishing community needs; policies and partners; exploring existing workers and scope; selecting health workers; education and training; working conditions for recruitment and retention; accreditation and recognition of workers; professional support/up-skilling and; monitoring and evaluation. For each action, a summary of LMICs-specific evidence and prompts was developed to stimulate reflection and learning. To support implementation, rural pathways exemplars from different WHO regions were also compiled. Field-testing showed the Checklist is fit for purpose to guide holistic planning and benchmarking of rural pathways, irrespective of LMICs, stakeholder, or health worker type.Conclusion: The Rural Pathways Checklist provides an agreed global conceptual framework for the practical implementation of “grow your own” strategies in LMICs. It can be applied to scale-up activity for rural workforce training and development in LMICs, where health workers are most limited and health needs are greatest.

Trial in Progress: Quantifying the Humanistic and Socioeconomic Burden of Paroxysmal Nocturnal Hemoglobinuria in the COMMODORE Burden of Illness Study

Background Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disease associated with major complications such as thrombotic events and impaired renal function. Prior to the introduction of C5 inhibitors in 2007, PNH had been fatal in about 35% of patients within 5 years of diagnosis; yet, this fatality rate continues in countries without access to these medications. Worldwide access to the C5 inhibitor eculizumab is hindered by the unavailability of treatment, and in places where treatment is approved, cost of treatment, reimbursement issues, infrastructure, or patient restrictions may further impede access (Risitano et al, Am J Hematol. 2018; Risitano et al, Front Immunol. 2019). PNH treatment places a significant economic burden on healthcare systems. In a number of countries, this has resulted in negative health technology appraisals (HTAs), indicative that optimal care and resource utilization are not being achieved (Coyle et al, Med Decis Making. 2014). New therapies with more convenient modes of administration may have the potential to improve how PNH is clinically treated and may have a positive effect on the economic burden and access to C5 inhibitors globally. Robust data on the real-life burden and cost of PNH are therefore needed to assess the impact of current therapies and establish a baseline for new therapeutic approaches. The data derived from this study will be used to support HTA processes and inform the value of new therapies for PNH. Objectives The COMMODORE Burden of Illness (BOI) study will quantify the direct medical costs (eg, treatment and hospitalization), direct nonmedical costs (eg, travel), and indirect costs (eg, impact on work productivity and family burden) associated with PNH for patients and care providers and determine the impact of PNH on health-related quality of life (HRQoL). Study Design and Methods This is an international, prevalence-based, bottom-up, burden of illness study containing both retrospective and prospective data collection. The study will be overseen by an expert reference group consisting of multidisciplinary stakeholders. The study protocol and materials will be submitted for ethical approval to the University of Chester in the United Kingdom. Physicians will provide information on sociodemographic, clinical, and medical resource utilization using an electronic case record form (eCRF). Through patient and public involvement and engagement, patients, after giving informed consent, will provide further information on the economic and HRQoL impact of PNH by completing patient-reported outcome surveys. Patients from France, Germany, United Kingdom, and China will be included. The study aims to recruit 94 physicians reporting 350 patient eCRFs with an expected return of 140 patient surveys and longitudinal data collection after 6 to 12 months for each patient. Mean per-patient costs, including direct medical and nonmedical costs, and indirect resource utilization will be calculated by multiplying the individual resource utilization with country-specific unit costs. National economic burden will be extrapolated by applying national prevalence estimates of PNH. Additionally, the impact of PNH on HRQoL in patients will be assessed within this study. Summary The COMMODORE BOI study aims to characterize current PNH treatment via quantification of the humanistic and socioeconomic burden at the patient, healthcare system, and societal level to enhance the evidence base for treatment and decision-making in this community. Final results are expected be available by the second quarter of 2022. Disclosures Hampton: F. Hoffmann-La Roche Ltd: Current Employment, Current equity holder in publicly-traded company, Other: All authors received support for third party writing assistance, furnished by Scott Battle, PhD, provided by F. Hoffmann-La Roche, Basel, Switzerland.. Katz:F. Hoffmann-La Roche Ltd: Current Employment, Other: All authors received support for third party writing assistance, furnished by Scott Battle, PhD, provided by F. Hoffmann-La Roche, Basel, Switzerland.. Shang:F. Hoffmann-La Roche Ltd: Current Employment, Current equity holder in publicly-traded company, Other: All authors received support for third party writing assistance, furnished by Scott Battle, PhD, provided by F. Hoffmann-La Roche, Basel, Switzerland.. Dhillon:F. Hoffmann-La Roche Ltd: Other: All authors received editorial support for this abstract, furnished by Scott Battle, funded by F. Hoffmann-La Roche Ltd, Basel, Switzerland. ; HCD Economics: Current Employment. Hubberstey:HCD Economics: Current Employment; Huntingdon's Disease Youth Organization: Membership on an entity's Board of Directors or advisory committees; F. Hoffmann-La Roche Ltd: Other: All authors received editorial support for this abstract, furnished by Scott Battle, funded by F. Hoffmann-La Roche Ltd, Basel, Switzerland. .

Adaptation of the CarFreeMe driver retirement intervention to provide driving cessation support to older people living with dementia

AbstractObjective:Driving and stopping driving present challenging issues for older people living with memory problems and the family members supporting them. Changes to driving status impact the individual stopping driving and their family members. CarFreeMe is an existing, effective driving cessation program for older people that may be applicable to older people living with dementia. The purpose of this study was to adapt the program and explore feasibility and key stakeholder perspectives.Methods:The Medical Research Council guidelines for conducting research into complex interventions guided the development, acceptability and feasibility piloting. A multidisciplinary approach was taken, and key stakeholders were involved throughout the process. This included an adaptation process, followed by expert reference group feedback and case series pilot study.Results:The background research indicated that some key changes were required to meet the needs of people living with dementia. Aspects of the content, language, format and activities were adapted and an additional module was created for family members – whose involvement was identified as important. A more personalized, flexible approach was recommended. The expert reference group [psychologists (n= 2), occupational therapists (n= 3) and dementia behavior consultants (n= 2)] indicated the program was appropriate and needed, and made recommendations for feasibility. Pilot testing with three families indicated acceptability.Conclusion:A driving cessation program adapted for use with people living with dementia and their families required some changes to meet the needs and situations based on feedback from key stakeholders. Future studies will evaluate implementation outcomes across a range of settings.

Developing a competence framework for cognitive analytic therapy.

This paper describes the development and summarizes the content of a competence framework for delivery of cognitive analytic therapy (CAT). The framework was developed using the evidence-based method developed by Roth and Pilling (2008, Behavioural and Cognitive Psychotherapy, 36, 129). A review of the CAT outcome literature identified where CAT interventions had evidence of efficacy. Standard texts on CAT were primary sources for details of theory and practice. This process was supported by an expert reference group (ERG). The role of the ERG was to provide professional advice on areas where the evidence base was lacking, but where CAT interventions were commonly used by therapists trained in the model. A framework was produced and structured in terms of core knowledge, core skills, and meta-competences (which require therapeutic judgement rather than simple adherence to a treatment protocol). The framework enables trainees, service users, service managers, and commissioners to better understand a) the core features of CAT and b) what competences need to be in place for CAT to be skilfully delivered in practice. It is possible to define the core competences of CAT. Whilst generic competences are important, there are five CAT-specific domains of competence. The CAT-specific competences reflect the three-phase structure of the therapy: reformulation, recognition, and revision.

Lasting lessons learnt in the radiology department from the battle with COVID-19

Lasting lessons learnt in the radiology department from the battle with COVID-19

Diversity training evaluation for community aged care: Tool development

Diversity characteristics such as culture, sexual orientation, and social situation potentially impact the participation of older individuals in healthcare. An awareness of diversity characteristics and their potential to impact on older people's access to health and aged care by professionals through training is important. This paper outlines the development and initial validation of a survey using adapted Delphi methodology and distribution to 195 health and aged care professionals pre- and post-diversity training. An initial pool of 31 items were developed with an expert reference group and reduced to 21 through exploratory factor analysis. A two-factor solution was extracted, measuring skills and attitudes of professionals relative to providing services to older people with diverse characteristics. Internal consistency of the items yielded a Cronbach alpha of 0.78. T-tests conducted on the pre- and post-survey data showed significantly higher scores on the domains of skills and attitudes following the training. Knowledge was not effectively captured using this method, with true-false or free-recall questions being a more appropriate approach. This tool fills a gap in the evaluation literature, providing an important first step to assess outcomes of diversity training in community aged care. Further validation is necessary for the tool to be used more widely in the sector.

The Diabetes and Emotional Health Handbook and Toolkit for Health Professionals Supporting Adults With Type 1 and Type 2 Diabetes: Formative Evaluation.

BackgroundHealth professionals have expressed unmet needs, including lacking the skills, confidence, training, and resources needed to properly attend to the psychological needs of people with diabetes.ObjectiveInformed by needs assessments, this study aimed to develop practical, evidence-based resources to support health professionals to address the emotional needs of adults with type 1 or type 2 diabetes.MethodsWe developed a new handbook and toolkit informed by formative evaluation, including literature reviews, stakeholder consultation and review, and a qualitative study. In the qualitative study, health professionals participated in interviews after reading sections of the handbook and toolkit.ResultsThe literature review uncovered that psychological problems are common among adults with diabetes, but health professionals lack resources to provide related support. We planned and drafted resources to fill this unmet need, guided by stakeholder consultation and an Expert Reference Group (ERG). Before finalizing the resources, we implemented feedback received from stakeholders (ERG, health professionals, academics, and people with diabetes). The resulting resources were the practical, evidence-based Diabetes and Emotional Health handbook and toolkit. A total of 19 health professionals took part in the qualitative study about the handbook and toolkit. They viewed the resources favorably, felt empowered to support people with diabetes experiencing psychological problems, and felt motivated to share the resources with others. Some gave examples of how they had used the handbook in clinical practice. A perceived highlight was the inclusion of a process model outlining 7 steps for identifying and supporting people with emotional problems: the 7 A’s model. With funding from the National Diabetes Services Scheme (NDSS), more than 2400 copies of Diabetes and Emotional Health have been distributed. It is freely available on the Web. The NDSS is an initiative of the Australian Government administered with the assistance of Diabetes Australia.ConclusionsThe new evidence-based resources are perceived by stakeholders as effective aids to assist health professionals in providing emotional support to adults with diabetes. The 7 A’s model may have clinical utility for routine monitoring of other psychological and health-related problems, as part of person-centered clinical care.

The DINARC© Toolkit - Clinical Academic Research Capacity-Building and Post-Doctoral Development for Nurses, Midwives and Allied Health Professionals (NMAHP)

The challenges of developing nurses, midwives and AHPs (NMAHPs) as clinical academics (CA) have received international attention. Balancing clinical practice and academic pursuit, often where managers are unfamiliar with academic career requirements, is one such challenge; however, the current literature provides limited developmental guidance. The aim of this article is to describe the DINARC© (Dissemination, Implementation, Networking, Active Research and Clinical practice) Toolkit, a continuous practice development aide for NMAHPs who are in the early post-doctoral phase of a clinical academic career (CAC). We identified five DINARC© elements, through evidence review and synthesis, as requisites for supporting the progression of a CAC. An ‘expert reference group’ (CAs, academic supervisors and nurse leaders) advised and assisted in development of the DINARC© concept. A Practitioner Research Plan and Mentor–Mentee Discussion Guide was developed and applied within a large metropolitan UK university teaching hospital; this was designed to identify the essential elements required to successfully navigate a CAC pathway. Early feedback from practitioners and managers suggests that DINARC© aids CAs in navigating an early CAC and offers guidance for managers. Further application and evaluation of DINARC© is now required by those developing a CAC. Implications for practice: DINARC© is a resource to guide practitioners’ CAC development with the goal of integrating and strengthening clinically-based NMAHP research activities, with related improvements in patient care. We believe that DINARC© has wider relevance as a useful tool, worthy of testing internationally.

The delivery of Primary Health Care in remote communities: A Grounded Theory study of the perspective of nurses

BackgroundAustralia has vast areas of desert, wilderness and offshore islands where nurses provide the majority of health care services. The residents of Australia's remote communities generally have poorer health status than their metropolitan counterparts. Despite recognition of Primary Health Care as a comprehensive model of acute and preventative care well suited to areas of high health and social need, there is little known about how nurses employ the Primary Health Care model in practice. ObjectivesThis study described and explained from the perspective of nurses, the actions and interactions involved in the delivery of Primary Health Care in remote communities. DesignThis study was conducted from a Constructivist Grounded Theory perspective. SettingsThe setting was community health centres or Aboriginal Medical Services located in ‘remote’ or ‘very remote’ areas. Communities with inpatient health services were excluded. ParticipantsTwenty four Nurse Practitioners, Registered Nurses and nursing academics participated. Participants had worked or were working, in a variety of remote communities across Australia. Length of service ranged from three months to over 15 years nursing in remote areas. MethodsData were collected through 23 telephone interviews and an expert reference group. Theoretical sampling and constant comparative analysis were used to reach theoretical saturation. ResultsThe core issue participants faced was the inability to provide Primary Health Care. Four conditions impacted on the core issue: understanding the social world of the remote community, availability of resources, clinical knowledge and skill and, shared understanding and support. The process of doing the best you can with what you have, emerged as the way participants dealt with the inability to provide Primary Health Care. The process involved four primary activities: facilitating access to health care, continually learning, seeking understanding, and home-making in a work environment. The outcome of this process was considered to be making compromises to provide Primary Health Care. ConclusionsThis study describes the substantive theory: making compromises to provide Primary Health care services in the remote Australian setting. Understanding the process of making compromises could direct employers and educators in their efforts to improve the provision of Primary Health Care in a variety of settings. Increased attention to the education, resources and support of nurses is likely to increase access to safe, quality care for remote communities.

MEASURING CLIENT EXPERIENCE IN RESIDENTIAL AGED CARE TO INFORM AND SUPPORT CONSUMER CHOICE

The Australian Government Aged Care Quality and Safety Commission (prior to January 2019 known as the Australian Aged Care Quality Agency) is responsible for accreditation of Australian aged care services which are audited against the Australian Accreditation Standards. Accreditation reports are publicly available. Prior to 2017, some clients were interviewed about their experiences, but the resulting information could not represent the client experience within a service due to low numbers, biased sampling, and an unsystematic approach to asking questions. La Trobe University was engaged to develop and pilot an interview tool to measure client experience for use in accreditation. Potential questions were identified through a literature review, mapped against the Accreditation Standards, and workshopped with an expert reference group. Twenty-four questions and a visual analogue were then piloted. Consumer groups and groups of Indigenous and culturally diverse clients in residential aged care homes were consulted. The perspective of Quality Agency surveyors was sought on the questions’ usability. Statistical analyses sought to identify questions that minimised missing data, were responded to similarly by residents and their representatives, and elicited stable responses on retest. Twelve questions were identified as optimal. The 10 quantitative questions proved to reflect a single underlying dimension (consumer experience) and, when summed and explored through regression analyses, differentiated services significantly. The consumer experience interview tool is now used in all accreditation audits in Australia. Results are then used to generate consumer experience reports, which are published online and can support consumer choice of a residential aged care home.

Very useful, but do carefully: Mental health researcher views on establishing a Mental Health Expert Consumer Researcher Group.

WHAT IS KNOWN ON THE SUBJECT?: Contemporary mental health policy stipulates consumer participation in all aspects of mental health services including service evaluation and other forms of mental health research. Research is identified as underpinning quality mental health services, and therefore, consumers researchers could enhance the mental health sector by contributing to the quality, credibility and relevance of mental health research. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Non-consumer researchers generally supported the concept of a consumer expert reference group for researchers at the individual and institutional level. A consumer expert reference group should reflect diversity and offer expertise relevant to the topic of research and may represent one way to normalize partnerships with consumer researchers and realize the benefits they can bring to research. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Quality mental health services are underpinned by robust research evidence. It is crucial that consumers are active participants in research activity. The availability of a consumer expert reference group could facilitate collaborations between consumer and non-consumer researchers and contribute to a stronger consumer focus embedded in mental health research. Abstract Introduction Contemporary mental health policy identifies consumers as active participants in all aspects of mental health services from design to evaluation. Consumer researchers should be actively involved in mental health research and contribute to quality service delivery. Aim To gain a snapshot of mental health researcher views on strategies for increasing research by or with consumers in mental health through the establishment of an Expert Consumer Researcher Group (ECRG). Methods Cross-sectional survey of 41 non-consumer mental health researchers from Australia or New Zealand. Results The introduction of an ECRG was considered an effective strategy for linking consumer and non-consumer researchers and providing specialist advice on research design and methodology. The most suitable location for this group was identified as within consumer advocacy agencies (71%), universities (66%) or research funding bodies (66%). Participants rated their likelihood of seeking advice from the ECRG as high. Discussion Research participants supported the value of an ECRG. They emphasized the importance of ensuring the group reflected a diversity of views and offered specialized expertise related to the specific topic. The ECRG could benefit both individual researchers and larger research organizations. Implications for practice An ECRG could facilitate collaborations with consumer researchers and in turn enhance the quality of mental health research.

Inter-Observer Variability in Target Volume Delineations of Benign and Metastatic Brain Tumours for Stereotactic Radiosurgery: Results of a National Quality Assurance Programme

AimsTo quantify inter-observer variation between all the intracranial stereotactic radiosurgery (SRS) providers in England in delineating the target volumes of four brain tumour cases. Materials and methodsTwenty-two, cross-platform SRS providers in England were instructed during a national commissioning assessment to contour the gross tumour volume (GTV) of six brain metastases, one cavernous sinus meningioma, one vestibular schwannoma and one pituitary adenoma. An expert reference group provided feedback if submitted contours were considered to be outliers and those centres were instructed to resubmit their contours. All contours were analysed in Python. The target volume contour (observed volume; VOBS), encompassing volume, 50% agreement volume (AV50), 100% agreement volume (AV100), concordance index (CCI) and discordance index (DCI) were calculated. ResultsTwenty-one centres participated using five different treatment platforms (CyberKnife, Gamma Knife, Varian Linac, Elekta Linac, Tomotherapy) and seven different treatment planning systems (GammaPlan, iPlan, Multiplan, Pinnacle, Eclipse, CMS Focal). The greatest variability was observed in the smallest brain metastases (GTV5 AV50 0.0 cm3, CCI 0.28–0.84, DCI 0.00–0.70) and pituitary case (AV50 1.1 cm3, CCI 0.42–0.82, DCI 0.01–0.40). The greatest agreement was observed with the vestibular schwannoma (AV50 2.8 cm3, CCI 0.77–0.94, DCI 0.00–0.17). There were four resubmissions for the cavernous sinus meningioma and three resubmissions for the pituitary adenoma. ConclusionsInter-observer variability was most evident with the smallest brain metastases and pituitary case. Several additional outliers and one acceptable contour were suggested using the metric-based analysis of AV50, CCI and DCI. Comparing contours using these metrics is an effective way to identify whether individual contours are similar to the ‘true’ target and to flag potentially significant deviations.

New development: Reviews of public sector performance—groundhog day?

ABSTRACTThe purpose of this article is to canvass, and comment on, the main features of the recently completed Review of Governance, Performance and Accountability legislation/framework at the national level of government in Australia. Most of the Report’s 52 recommendations are procedural and will only be discussed when they may be of particular relevance in a broader context. The review reported on 4 September 2018. It continues the long line of reform reports conducted over the last 30 to 40 years. However, before the review was even completed, the Australian government announced (on 4 May 2018) another wide-ranging Independent Review of the Australian Public Service (APS), with a reference group of national and international experts having ‘diverse public and private sector experience’. Some suggested that the latter review should encompass the findings and recommendations of the former and be considered together, particularly as the announced chair was also a member of the earlier two-person review team. While no one would question the need for continuous learning, the main issue is about effective implementation of agreed recommendations that would improve performance and promote greater public confidence and trust in government.

Best practice in active surveillance for men with prostate cancer: a Prostate Cancer UK consensus statement.

ObjectivesTo develop a consensus statement on current best practice of active surveillance (AS) in the UK, informed by patients and clinical experts.Subjects and MethodsA consensus statement was drafted on the basis of three sources of data: systematic literature search of national and international guidelines; data arising from a Freedom of Information Act request to UK urology departments regarding their current practice of AS; and survey and interview responses from men with localized prostate cancer regarding their experiences and views of AS. The Prostate Cancer UK Expert Reference Group (ERG) on AS was then convened to discuss and refine the statement.ResultsGuidelines and protocols for AS varied significantly in terms of risk stratification, criteria for offering AS, and protocols for AS between and within countries. Patients and healthcare professionals identified clinical, emotional and process needs for AS to be effective. Men with prostate cancer wanted more information and psychological support at the time of discussing AS with the treating team and in the first 2 years of AS, and a named healthcare professional to discuss any questions or concerns they had. The ERG agreed 30 consensus statements regarding best practice for AS. Statements were grouped under headings: ‘Inclusion/Exclusion Criteria’; ‘AS follow‐up protocol’ and ‘When to stop AS’.ConclusionSignificant variation currently exists in the practice of AS in the UK and internationally. Men have clear views on the level of involvement in treatment decisions and support from their treating professionals when receiving AS. The Prostate Cancer UK AS ERG has developed a set of consensus statements for best practice in AS. Evidence for best practice in AS, and the use of multiparametric magnetic resonance imaging in AS, is still evolving, and further studies are needed to determine how to optimize AS outcomes.

Developing citizen advocacy for adults with intellectual disability

In 2010, the Report of Disability Policy Review Keogh 2010 was prepared on behalf of the Expert Reference Group on Disability Policy and its findings contributed to the subsequent Value for Money and Policy Review of Disability Service in Ireland Report DoH 2012, which evaluated the efficiency and effectiveness of Health Service Executive HSE funded statutory and non-statutory disability services in Ireland. The Keogh 2010 report emphaisised the importance of advocacy in developing person centred care services. This imptus became more important as various media scandals highlighted some incidents of poor care to people with intellectual disability. In 2016, Sage Advocacy & Support for Older People were given funding to develop a citizen advocacy project for adults with itellectual disability in Ireland. This study presents the findings from engagement with adults with intellectual disability, their families and formal caregivers. This project sought to gain understanding and depth into the perspectives of people with intellectual disability on their life world and to generate other stakeholders’ perspectives regarding caring for this population. Consequently, the study used a qualitative approach, which enables deep and rich insights to people’s lives and experiences and is valuable in examining the interpersonal aspects of care important to patients. Specifically narrative inquiry has the potential to produce themes from the accounts of the study participants. Ethics approval was gained from University College Dublin. Participants were recruited from contacting the facilities who provided care to adults with intellectual disability. Nine focus groups 5 with service users and 4 with service providers were held as well as 4 semi structured interviews 4 with family members of the person and 2 with key stakeholders with intellectual disability and a survey with the Irish Association of Social Workers. Data were analysed using Braun & Clarke's thematic anlysis approach with the assistance fo NVIVO 10. Five themes were developed: Personhood, Service Challenges, Family experiences, Society’s approach to people with intellectual disability, The need for my voice to be heard. These themes enabled multiple perspectives to be considered, particualarly emphasing the need to priortise the will, preference, values and beliefs of people with intellectual disabiity and the need for service users and families to empower rather than be paternalistic. Limitations of the study will also be presented.

Advancing social and emotional well-being in Aboriginal and Torres Strait Islander Australians: Clinicians' reflections.

An expert reference group met on four occasions to consider ways forward in terms of Indigenous mental health. This paper summarises the discussion and recommendations. While the negative effects of colonisation and trans-generational trauma continue, we propose renewed emphasis on improving access, cultural orientation and trauma-informed care, and a focus on the needs of young Indigenous Australians.