Community-based participatory-research through co-design: supporting collaboration from all sides of disability.

BACKGROUND: As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the 'why' of using co-design is well understood, there is limited literature on 'how' to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices. METHODS: A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing. RESULTS: The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers' perspective and the researcher's and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings. CONCLUSIONS: The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Accuracy of energy and nutrient intake estimation versus observed intake using four technology-assisted dietary assessment methods: a randomized crossover feeding study.

BACKGROUND: Technology-assisted 24-hour dietary recalls (24HR) have been widely adopted in population nutrition surveillance. Evaluations of 24HR inform improvements but direct comparisons of 24HR methods for accuracy in reference to a measure of true intake are rarely undertaken in a single study population. OBJECTIVE: To compare the accuracy of energy and nutrient intake estimation of four technology-assisted dietary assessment methods relative to true intake across breakfast, lunch, and dinner. METHODS: In a controlled feeding study with a crossover design, 152 participants (55% women; mean age 32y (SD 11); mean BMI 26 kg/m2 (SD 5)) were randomized to one of three separate feeding days to consume breakfast, lunch, and dinner, with unobtrusive weighing of foods and beverages consumed. Participants undertook a 24HR the following day (Automated Self-Administered Dietary Assessment Tool-Australia© (ASA24); Intake24-Australia©; mobile Food Record™ - Trained Analyst (mFR-TA); or Image-Assisted Interviewer-Administered 24-hour recall (IA-24HR)). When assigned to IA-24HR, participants referred to images captured of their meals using the mobile Food Record™ app. True and estimated energy and nutrient intakes were compared, and differences among methods were assessed using linear mixed models. RESULTS: The mean difference between true and estimated energy intake as a percentage of true intake was 5.4% (95% CI 0.6, 10.2) using ASA24, 1.7% (95% CI -2.9, 6.3) using Intake24, 1.3% (95% CI -1.1, 3.8) using mFR-TA, and 15.0% (95% CI 11.6, 18.3) using IA-24HR. The variances of estimated and true energy intakes were statistically significantly different for all methods (P<0.01), apart from Intake 24 (P=0.1). Differential accuracy in nutrient estimation was present among the methods. CONCLUSIONS: Under controlled conditions, Intake24, ASA24, and mFR-TA estimated average energy and nutrient intakes with reasonable validity, but intake distributions were estimated accurately by Intake24 only (energy and protein). This study may inform considerations regarding instruments of choice in future population surveillance. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry Number ACTRN12621000209897; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=381165&isReview=true.

Stratification of Barrett's esophagus surveillance based on p53 immunohistochemistry: a cost effectiveness analysis by an international collaborative group.

Background and Aim Surveillance of non-dysplastic Barrett's esophagus (BE) is recommended to identify progression to dysplasia; however, the most cost-effective strategy remains unclear. Mutation or aberrant expression of p53 has been associated with the development of dysplasia in BE. We sought to determine if surveillance intervals for BE could be stratified based on p53 expression. Methods A Markov model was developed for non-dysplastic BE. Patients with non-dysplastic BE (NDBE) underwent p53 immunohistochemistry (IHC) and those with abnormal p53 expression underwent surveillance endoscopy at 1 year, whilst patients with normal p53 expression underwent surveillance in 3 years. Patients with dysplasia underwent endoscopic therapy and surveillance. Results On base-case analysis, the strategy of stratifying surveillance based on abnormal p53 IHC was cost-effective relative to conventional surveillance and a natural history model, with an ICER of $8,258 for p53 IHC based surveillance. Both conventional and p53 stratified surveillance strategies dominated the natural history model. On probabilistic sensitivity analysis (PSA), the p53 IHC strategy ($28,652, 16.78 QALYs) was more cost-effective than conventional surveillance ($25,679, 16.17 QALYs) with a net monetary benefit (NMB) of $306,873 compared to conventional surveillance ($297,642) with ICER < $50000 in 96% of the iterations. The p53 stratification strategy was associated with a 14.5% reduction in the overall endoscopy burden and a 59% increase in dysplasia. Conclusion: A surveillance strategy for BE based on abnormal p53 IHC is cost-effective relative to a conventional surveillance strategy and is likely to be associated with higher diagnostic rates of dysplasia.

Cancer-Specific Health Utilities: Evaluation of Core Measurement Properties of the EORTC QLU-C10D in Lung Cancer Patients-Data from Four Multicentre LUX-Lung Trials, Applying Six Country Tariffs.

BACKGROUND: Cost-utility analysis generally requires valid preference-based measures (PBMs) to assess the utility of patient health. While generic PBMs are widely used, disease-specific PBMs may capture additional aspects of health relevant for certain patient populations. This study investigates the construct and concurrent criterion validity of the cancer-specific European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 dimensions (QLU-C10D) in non-small-cell lung cancer patients. METHODS: We retrospectively analysed data from four multicentre LUX-Lung trials, all of which had administered the EORTC Quality of Life Questionnaire (QLQ-C30) and the EQ-5D-3L. We applied six country-specific value sets (Australia, Canada, Italy, the Netherlands, Poland, and the United Kingdom) to both instruments. Criterion validity was assessed via correlations between the instruments' utility scores. Correlations of divergent and convergent domains and Bland-Altman plots investigated construct validity. Floor and ceiling effects were assessed. RESULTS: The comparison of the EORTC QLU-C10D and EQ-5D-3L produced homogenous results for five of the six country tariffs. High correlations of utilities (r > 0.7) were found for all country tariffs except for the Netherlands. Moderate to high correlations of converging domain pairs (r from 0.472 to 0.718) were found with few exceptions, such as the Social Functioning-Usual Activities domain pair (max. r = 0.376). For all but the Dutch tariff, the EORTC QLU-C10D produced consistently lower utility values compared to the EQ-5D-3L (x̄ difference from - 0.082 to 0.033). Floor and ceiling effects were consistently lower for the EORTC QLU-C10D (max. 4.67% for utilities). CONCLUSIONS: The six country tariffs showed good psychometric properties for the EORTC QLU-C10D in lung cancer patients. Criterion and construct validity was established. The QLU-C10D showed superior measurement precision towards the upper and lower end of the scale compared to the EQ-5D-3L, which is important when cost-utility analysis seeks to measure health change across the severity spectrum.

An Overview of Data Collection in Health Preference Research.

This paper focuses on survey administration and data collection methods employed for stated-preference studies in health applications. First, it describes different types of survey administration methods, encompassing web-based surveys, face-to-face (in-person) surveys, and mail surveys. Second, the concept of sampling frames is introduced, clarifying distinctions between the target population and survey frame population. The discussion then extends to different types of sampling methods, such as probability and non-probability sampling, along with an evaluation of potential issues associated with different sampling methods within the context of health preference research. Third, the paper provides information about different recruitment methods, including web-surveys, leveraging patient groups, and in-clinic recruitment. Fourth, a crucial aspect addressed is the calculation of response rate, with insights into determining an adequate response rate and strategies to improve response rates in stated-preference surveys. Lastly, the paper concludes by discussing data management plans and suggesting insights for future research in this field. In summary, this paper examines the nuanced aspects of survey administration and data collection methods in stated-preference studies, offering valuable guidance for researchers and practitioners in the health domain.

Valuing the SF-6Dv2 in the capital of Iran using a discrete choice experiment with duration.

BACKGROUND: The second version of the Short-Form 6-Dimension (SF-6Dv2) classification system has recently been developed. The objective of this study was to develop a value set for SF-6Dv2 based on the societal preferences of a general population in the capital of Iran. METHODS: A representative sample of the capital of Iran (n = 3061) was recruited using a stratified multistage quota sampling technique. Face-to-face interviews were conducted using binary choice sets from the international valuation protocol of the discrete choice experiment with duration. The conditional logit was used to estimate the final value set, and a latent class model was employed to assess heterogeneity of preferences. RESULTS: Coefficients generated from the models were logically consistent and significant. The best model was the one that included an additional interaction term for cases where one or more dimensions reached their most severe levels. It provides a value set with logical consistent coefficients and the lowest percentage of worse than death health states. Predicted values for the SF-6Dv2 were within the range of - 0.796-1. Pain dimension had the largest impact on utility decrement, whereas vitality had the least impact. The presence of preference heterogeneity was evident, and the Bayesian Information Criterion indicated the optimal fit for a latent class model with two classes. CONCLUSION: This study provided the SF-6Dv2 value set for application in the context of Iran. This value set will facilitate the use of the SF-6Dv2 instrument in health economic evaluations and clinical settings.

Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability.

OBJECTIVES: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). METHODS: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness. Twenty-one participants repeated the EQ-5D-Y-5L a few weeks later. Test-retest reliability was computed using weighted kappa and intraclass correlation coefficients, and convergent validity using Spearman's and Pearson's correlation coefficients. RESULTS: Caregivers of 234 children completed the survey, with <1% missing values. Only 1.7% reported "no problems" on all dimensions (11111). The dimensions with the lowest percentage of "no problems" were SC and UA (both 8%). Test-retest reliability coefficients were fair to substantial for 4 dimensions (weighted kappa .30 to .79) but low for PD and overall health, as measured by the visual analog scale (EQ-VAS). Convergent validity was strong (Spearman's correlation .65 to .87) for mobility, SC, and PD; moderate to strong for worry/sadness/unhappiness (.47 to .60) and the EQ-VAS (Pearson's correlation .49); and weak to moderate for UA (.21 to .52). CONCLUSIONS: Convergent validity was generally good; test-retest reliability varied. Children with ID had lower scores on SC and UA than other populations, and their EQ-VAS could fluctuate greatly, indicating poorer and less stable health-related quality of life.

The EORTC QLU-C10D is a valid cancer-specific preference-based measure for cost-utility and health technology assessment in the Netherlands.

BACKGROUND: Cost-utility analysis typically relies on preference-based measures (PBMs). While generic PBMs are widely used, disease-specific PBMs can capture aspects relevant for certain patient populations. Here the EORTC QLU-C10D, a cancer-specific PBM based on the QLQ-C30, is validated using Dutch trial data with the EQ-5D-3L as a generic comparator measure. METHODS: We retrospectively analysed data from four Dutch randomised controlled trials (RCTs) comprising the EORTC QLQ-C30 and the EQ-5D-3L. Respective Dutch value sets were applied. Correlations between the instruments were calculated for domains and index scores. Bland-Altman plots and intra-class correlations (ICC) displayed agreement between the measures. Independent and paired t-tests, effect sizes and relative validity indices were used to determine the instruments' performance in detecting clinically known-group differences and health changes over time. RESULTS: We analysed data from 602 cancer patients from four different trials. In overall, the EORTC QLU-C10D showed good relative validity with the EQ-5D-3L as a comparator (correlations of index scores r = 0.53-0.75, ICCs 0.686-0.808, conceptually similar domains showed higher correlations than dissimilar domains). Most importantly, it detected 63% of expected clinical group differences and 50% of changes over time in patients undergoing treatment. Both instruments showed poor performance in survivors. Detection rate and measurement efficiency were clearly higher for the QLU-C10D than for the EQ-5D-3L. CONCLUSIONS: The Dutch EORTC QLU-C10D showed good comparative validity in patients undergoing treatment. Our results underline the benefit that can be achieved by using a cancer-specific PBM for generating health utilities for cancer patients from a measurement perspective.

A qualitative study assessing allied health provider perceptions of telepractice functionality in therapy delivery for people with disability.

INTRODUCTION: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. METHODS: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. RESULTS: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. CONCLUSIONS: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in-person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in-person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in-person care. PATIENT OR PUBLIC CONTRIBUTION: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production.

Danish value sets for the EORTC QLU-C10D utility instrument.

PURPOSE: In this study, we developed Danish utility weights for the European Organisation for Research and Treatment of Cancer (EORTC) QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30. METHODS: Following a standardized methodology, 1001 adult participants from the Danish general population were quota-sampled and completed a cross-sectional web-based survey and discrete choice experiment (DCE). In the DCE, participants considered 16 choice sets constructed from the key 10 dimensions of the QLU-C10D and chose their preferred health state for each one. Utility weights were calculated using conditional logistic regression with correction for non-monotonicity. RESULTS: The sample (n = 1001) was representative of the Danish general population with regard to age and gender. The domains with the largest utility decrements, i.e., the domains with the biggest impact on health utility, were physical functioning (- 0.224), pain (- 0.160), and role functioning (- 0.136). The smallest utility decrements were observed for the domains lack of appetite (- 0.024), sleep disorders (- 0.057), and fatigue (- 0.064). Non-monotonicity of severity levels was observed for the domains sleep disturbances, lack of appetite, and bowel problems. Deviations from monotonicity were not statistically significant. CONCLUSION: The EORTC QLU-C10D is a relatively new multi-attribute utility instrument and is a promising cancer-specific health technology assessment candidate measure. The country-specific Danish utility weights from this study can be used for cost-utility analyses in Danish patients and for comparison with other country-specific utility data.

Economic burden of adverse perinatal outcomes from births to age 5 years in high-income settings: a protocol for a systematic review.

BACKGROUND: Adverse perinatal outcomes such as preterm, small for gestational age, low birth weight, congenital anomalies, stillbirth and neonatal death have devastating impacts on individuals, families and societies, with significant lifelong health implications. Despite extensive knowledge of the significant and lifelong health implications of adverse perinatal outcomes, information on the economic burden is limited. Estimating this burden will be crucial for designing cost-effective interventions to reduce perinatal morbidity and mortality. Thus, we will quantify the economic burden of adverse perinatal outcomes from births to age 5 years in high-income countries. METHODS AND ANALYSIS: A systematic review of all primary studies published in English in peer-reviewed journals on the economic burden for at least one of the adverse perinatal outcomes in high-income countries from 2010 will be searched in databases-MEDLINE (Ovid), EconLit, CINAHL (EBSCO), Embase (Ovid) and Global Health (Ovid). We will also search using Google Scholar and snowballing of the references list of included articles. The search terms will include three main concepts-costs, adverse perinatal outcome(s) and settings. We will use the Consolidated Health Economics Evaluation Reporting Standards 2022 and 17 criteria from the critical appraisal of cost-of-illness studies to assess the quality of each study. We will report the findings based on the Preferred Reporting Items for Systematic Reviews and Meta-analyses 2020 statement. Costs will be converted into a common currency (US dollar), and we will estimate the pooled cost and subgroup analysis will be done. The reference lists of included papers will be reviewed. ETHICS AND DISSEMINATION: This systematic review will not involve human participants and requires no ethical approval. The results of this review will be published in a peer-reviewed journal. PROSPERO REGISTRATION NUMBER: CRD42023400215.

Visualising Findings in the Co-Design of Telepractice for the Disability Community.

The methods and strategies utilised to facilitate focus group discussion within a co-design context have a fundamental impact on the opportunity for participants to actively engage with the content. This is a description of the strategies our project utilized including visual prompts and preparation guide to assist both service users and staff participants facilitate access to concepts discussed within our focus group sessions.

Systematic Review of the Relative Social Value of Child and Adult Health.

OBJECTIVES: We aimed to synthesise knowledge on the relative social value of child and adult health. METHODS: Quantitative and qualitative studies that evaluated the willingness of the public to prioritise treatments for children over adults were included. A search to September 2023 was undertaken. Completeness of reporting was assessed using a checklist derived from Johnston et al. Findings were tabulated by study type (matching/person trade-off, discrete choice experiment, willingness to pay, opinion survey or qualitative). Evidence in favour of children was considered in total, by length or quality of life, methodology and respondent characteristics. RESULTS: Eighty-eight studies were included; willingness to pay (n = 9), matching/person trade-off (n = 12), discrete choice experiments (n = 29), opinion surveys (n = 22) and qualitative (n = 16), with one study simultaneously included as an opinion survey. From 88 studies, 81 results could be ascertained. Across all studies irrespective of method or other characteristics, 42 findings supported prioritising children, while 12 provided evidence favouring adults in preference to children. The remainder supported equal prioritisation or found diverse or unclear views. Of those studies considering prioritisation within the under 18 years of age group, nine findings favoured older children over younger children (including for life saving interventions), six favoured younger children and five found diverse views. CONCLUSIONS: The balance of evidence suggests the general public favours prioritising children over adults, but this view was not found across all studies. There are research gaps in understanding the public's views on the value of health gains to very young children and the motivation behind the public's views on the value of child relative to adult health gains. CLINICAL TRIAL REGISTRATION: The review is registered at PROSPERO number: CRD42021244593. There were two amendments to the protocol: (1) some additional search terms were added to the search strategy prior to screening to ensure coverage and (2) a more formal quality assessment was added to the process at the data extraction stage. This assessment had not been identified at the protocol writing stage.

How Well Does the EQ-5D-Y-5L Describe Children With Intellectual Disability?: "There's a Lot More to My Child Than That She Can't Wash or Dress Herself."

OBJECTIVES: The EQ-5D-5L is a generic health utility instrument for measuring health-related quality of life (HRQoL), with self-report and proxy report versions for children (EQ-5D-Y-5L). Children with intellectual disability (ID) are a heterogeneous population whose impairments and comorbidities place them at risk of poor HRQoL. This study aimed to describe the content validity and suitability for children with ID of a proxy report version of the EQ-5D-Y-5L as seen by their caregivers. METHODS: A proxy report EQ-5D-Y-5L was administered to caregivers of children with ID. Using cognitive think-aloud interviewing, participants were encouraged to provide the reasoning for their choices, assess the questions' relevance, comprehensibility, and comprehensiveness, and comment on the tool's strengths and weaknesses. Qualitative content analysis used both directed (deductive) and conventional (inductive) methods. RESULTS: There were 28 interviews with 30 caregivers of children with ID (aged 8-22 years, 17 boys, with autism spectrum disorder, cerebral palsy, Down syndrome, and rare genetic disorders). The EQ-5D-Y-5L was considered clear, concise, and largely relevant, but insufficiently comprehensive for this population. Interviewees sought clarification of the definition of HRQoL, whether it included unchanging impairments (vs fluctuating health states), and what basis of comparison to use (child or peer). Many interviewees suggested inclusion of questions for other domains, including communication and social engagement, equipment and human supports required, and a wider range of mental health questions. CONCLUSIONS: The study suggests that further work is required to ensure accurate responses to the EQ-5D-Y-5L from caregivers of children with ID and to describe these children adequately.

Unravelling the Self-Report Versus Proxy-Report Conundrum for Older Aged Care Residents: Findings from a Mixed-Methods Study.

OBJECTIVES: No guidance currently exists as to the cognition threshold beyond which self-reported quality of life for older people with cognitive impairment and dementia is unreliable. METHODS: Older aged care residents (≥ 65 years) were randomly assigned to complete the EQ-5D-5L in computer-based (eye movements were tracked) or hard copy (participants were encouraged to 'think aloud') format. Cognition was assessed using the Mini-Mental State Examination (MMSE). Think aloud and eye tracking data were analysed by two raters, blinded to MMSE scores. At the participant level, predefined criteria were used to assign traffic light grades (green, amber, red). These grades indicate the extent to which extracted data elements provided evidence of self-report reliability. The MMSE-defined cognition threshold was determined following review of the distributions of assigned traffic light grades. RESULTS: Eighty-one residents participated and provided complete data (38 eye tracking, 43 think aloud). In the think aloud cohort, all participants with an MMSE score ≤ 23 (n = 10) received an amber or red grade, while 64% of participants with an MMSE score ≥ 24 (21 of 33) received green grades. In the eye tracking cohort, 68% of participants with an MMSE score ≥ 24 (15 of 22) received green grades. Of the 16 eye tracking participants with an MMSE score ≤ 23, 14 (88%) received an amber or red grade. CONCLUSIONS: Most older residents with an MMSE score ≥ 24 have sufficient cognitive capacity to self-complete the EQ-5D-5L. More research is needed to better understand self-completion reliability for other quality-of-life instruments in cognitively impaired populations.

Co-designing a telepractice journey map with disability customers and clinicians: Partnering with users to understand challenges from their perspective.

INTRODUCTION: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability-specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia-based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co-design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. METHOD: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co-design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. RESULTS: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in-person delivery. CONCLUSION: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co-design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. PATIENT OR PUBLIC CONTRIBUTION: The paper forms part of a larger co-design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co-designers in the workshops, journey map and this article production.

Public preference on sharing health data to inform research, health policy and clinical practice in Australia: A stated preference experiment.

OBJECTIVE: To investigate public willingness to share sensitive health information for research, health policy and clinical practice. METHODS: A total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression. RESULTS: When asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement. CONCLUSIONS: The findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.

Telepractice implementation experiences during the COVID-19 pandemic, a qualitative exploration of Australian disability allied health providers: A diamond in the rough.

Telepractice has existed for decades, but as a result of the COVID-19 pandemic, it gained value and increased desirability across the disability service and health sectors, as a mitigation strategy for the viral transmission risk. The increased desirability of telepractice encouraged organisations to invest and correspondingly enhance access to services delivered remotely via digital technology including allied health therapy interventions. The investment and uptake of telepractice provided greater learning opportunities and ability to investigate telepractice implementation in specific contexts such as disability services, enabling service providers the ability to tailor to specific population needs. Methods: This study investigated the experience of telepractice implementation during the COVID-19 pandemic from 13 allied health clinicians and managers of disability organisations across Australia between November 2021 and February 2022. A contextualist and critical realist theory was applied through the study, with reflective thematic analysis used as the data analysis method and findings described using a metaphor method centring on diamond formation. The method selection aimed to produce findings grounded in qualitative methodology and methods while remaining accessible to the disability community. Results: An exploration and analysis of the data by the authors identified six themes addressing the experiences of participants and used the metaphor of diamond formation to describe changes in allied health clinicians and disability organisations during the COVID-19 influenced telepractice implementation. Conclusion: The allied health clinicians and managers who participated in this study demonstrated an overall sense of hope that telepractice would be a viable and sustainable delivery pathway for services in the future. This article endorses the integration of a planned telepractice delivery pathway that capitalises on the momentum created by the COVID-19 pandemic in a purposeful and accessible way that looks to enhance rather than replace current practices.

Insights into parents' perceived worry before and during the COVID-19 pandemic in Australia: inequality and heterogeneity of influences.

BACKGROUND: Excessive worry is an invisible disruptive force that has adverse health outcomes and may advance to other forms of disorder, such as anxiety or depression. Addressing worry and its influences is challenging yet crucial for informing public health policy. METHODS: We examined parents' worries, influences, and variability before and during COVID-19 pandemic and across geography. Parents (n = 340) and their primary school-aged children from five Australian states completed an anonymous online survey in mid-2020. After literature review, we conceptualised the influences and performed a series of regression analyses. RESULTS: Worry levels and the variables contributing to parents' worry varied before to during the pandemic. The proportion of parents who were "very worried all the time" increased by 14.6% in the early days of the pandemic. During the pandemic, ethnic background modified parents' worry and parents' history of daily distress symptoms was a significant contributor (p < 0.05). Excessive exposure to news remained significant both before and during the pandemic. The primary predictor of parents' worry before COVID-19 was perceived neighbourhood safety, while the main predictor during COVID-19 was financial risk due to income change. Some variable such as neighbourhood safety and financial risk varied in their contribution to worry across geographical regions. The proportion of worried children was higher among distraught parents. CONCLUSION: Parents' worry during the health pandemic was not triggered by the health risks factors but by the financial risk due to income change. The study depicts inequality in the impact of COVID-19 by ethnic background. Different policies and reported virus case numbers across states may have modified the behaviour of variables contributing to the geography of parents' worry. Exposure to stressors before the COVID-19 pandemic may have helped parents develop coping strategies during stressful events. Parents are encouraged to limit their exposure to stressful news. We advocate for parents-specific tailored policies and emphasise the need for access to appropriate mental health resources for those in need. Advancing research in geographical modelling for mental health may aid in devising much-needed location-targeted interventions and prioritising resources in future events.