The Inverse Data Law: Market Imperatives, Data, and Quality in AI Supported Care.

Over the last decade, the explosion of "Big Data" and its fusion with AI has led many to believe that the development and integration of AI systems in healthcare will usher in a transformative revolution that democratises access to high quality healthcare and collectively improve patient outcomes. However, the nature of market forces in the evolving data economy, has started to show evidence that the opposite is more likely to be true. This paper argues that there is a poorly understood "Inverse Data Law" that will exacerbate the widening health divide between affluent and marginalised communities because: (1) data used to train AI systems favour individuals that are already engaged with healthcare, who have the lowest burden of disease, but the highest purchasing power; and (2) data used to drive market decisions around investment in AI health technology favours tools that increase the commodification of healthcare through over-testing, over-diagnosis, and the acute and episodic management of disease, over tools that support the patient to prevent disease. This dangerous combination is more likely to cripple efforts towards preventative medicine, as data collection and utilisation tends to be inversely proportional to the needs of the patients served - the inverse data law. The paper concludes by introducing important methodological considerations in the design and evaluation of AI systems to promote systems improvement for marginalised users.

Hepatocellular carcinoma surveillance based on the Australian Consensus Guidelines: a health economic modelling study.

BACKGROUND: Hepatocellular carcinoma (HCC) is the fastest increasing cause of cancer death in Australia. A recent Australian consensus guidelines recommended HCC surveillance for cirrhotic patients and non-cirrhotic chronic hepatitis B (CHB) patients at gender and age specific cut-offs. A cost-effectiveness model was then developed to assess surveillance strategies in Australia. METHODS: A microsimulation model was used to evaluate three strategies: biannual ultrasound, biannual ultrasound with alpha-fetoprotein (AFP) and no formal surveillance for patients having one of the conditions: non-cirrhotic CHB, compensated cirrhosis or decompensated cirrhosis. One-way and probabilistic sensitivity analyses as well as scenario and threshold analyses were conducted to account for uncertainties: including exclusive surveillance of CHB, compensated cirrhosis or decompensated cirrhosis populations; impact of obesity on ultrasound sensitivity; real-world adherence rate; and different cohort's ranges of ages. RESULTS: Sixty HCC surveillance scenarios were considered for the baseline population. The ultrasound + AFP strategy was the most cost-effective with incremental cost-effectiveness ratios (ICER) compared to no surveillance falling below the willingness-to-pay threshold of A$50,000 per quality-adjusted life year (QALY) at all age ranges. Ultrasound alone was also cost-effective, but the strategy was dominated by ultrasound + AFP. Surveillance was cost-effective in the compensated and decompensated cirrhosis populations alone (ICERs < $30,000), but not cost-effective in the CHB population (ICERs > $100,000). Obesity could decrease the diagnostic performance of ultrasound, which in turn, reduce the cost-effectiveness of ultrasound ± AFP, but the strategies remained cost-effective. CONCLUSIONS: HCC surveillance based on Australian recommendations using biannual ultrasound ± AFP was cost-effective.

Improving colorectal cancer screening - consumer-centred technological interventions to enhance engagement and participation amongst diverse cohorts.

The current "Gold Standard" colorectal cancer (CRC) screening approach of faecal occult blood test (FOBT) with follow-up colonoscopy has been shown to significantly improve morbidity and mortality, by enabling the early detection of disease. However, its efficacy is predicated on high levels of population participation in screening. Several international studies have shown continued low rates of screening participation, especially amongst highly vulnerable lower socio-economic cohorts, with minimal improvement using current recruitment strategies. Research suggests that a complex of dynamic factors (patient, clinician, and the broader health system) contribute to low citizen engagement. This paper argues that the challenges of screening participation can be better addressed by (1) developing dynamic multifaceted technological interventions collaboratively across stakeholders using human-centered design; (2) integrating consumer-centred artificial intelligence (AI) technologies to maximise ease of use for CRC screening; and (3) tailored strategies that maximise population screening engagement, especially amongst the most vulnerable.

Survival of primary liver cancer for people from culturally and linguistically diverse backgrounds in Australia.

BACKGROUND: Survival for Primary Liver Cancer (PLC) has been investigated in Australia, but limited work has been conducted on the burden for people with different socioeconomic status, region of residence, causes of PLC, and culturally and linguistically diverse (CALD) backgrounds. This study aimed to cover this gap in the literature by investigating PLC survival with the aforementioned factors. METHODS: This study linked four administrative datasets: Victorian Cancer Registry, Admitted Episodes Dataset, Emergency Minimum Dataset, and Death Index. The cohort was all cases with a PLC notification within the Victorian Cancer Registry between 01/01/2008 and 01/01/2016. The Kaplan-Meier method was used to estimate survival probabilities and the log-rank test was used to compare the difference in survival between subgroups. The Cox proportional hazard model was used to explore factors associated with PLC survival. RESULTS: The 1-, 3- and 5-year survival rates were 50.0%, 28.1% and 20.6%, respectively, with a median survival of 12.0 months (95% confidence interval (CI): 11.0 - 12.9 months). Higher survival was associated with younger age, hepatocellular carcinoma, and higher socio-economic status. People born in Asian, African, and American regions had higher survival than those born in Australia and New Zealand. Cases with viral hepatitis as an identified aetiology had higher survival than those whose PLC was related to alcohol consumption (hazard ratio=1.52, 95% CI: 1.19 - 1.96), diabetes and fatty liver disease (hazard ratio=1.35, 95% CI: 1.08 - 1.68). CONCLUSION: Survival outcomes for people diagnosed with PLC were still poor and affected by many factors. Asian and African cases had better survival than Australian and New Zealand patients as PLC in Asian and African cases was mostly caused by viral hepatitis. Metropolitan areas were associated with a higher survival than rural areas, not only due to accessibility to surveillance and healthcare services but also because the majority of overseas-born patients reside in metropolitan areas.

Blockchain Enabled Patient-Centred Care for Inflammatory Bowel Disease: 4 Principles for Socio-Techical and Clinical Alignment.

Inflammatory bowel disease (IBD) is a chronic relapsing and remitting illness. The presentation, diagnosis and management IBD are complex, and involve multi-disciplinary care with complex information requirements. The lack of an accurate and comprehensive patient record is often a stumbling block for optimal patient care. Blockchain technology therefore appears to be the perfect solution to improve IBD patient care. Blockchain technology can provide comprehensive and secure data transmission. Many current projects using blockchain for IBD care focus on information delivery. Recently, clinical research has shown that patients have different perceptions of what constitutes high-quality care, compared to healthcare professionals. Patient-centred care in IBD has increasingly taken central stage. Concurrently, blockchain in healthcare has shifted focus to argue for allowing the patient to be in the driver's seat for information access, facilitated by blockchain-enabled patient-driven interoperability and patient-driven care. This paper dissects the risks and benefits of these two approaches in using blockchain in IBD patient care. This paper then explores the socio-technical and clinical considerations in using blockchain in IBD patient care. Finally, this paper presents four key principles in using blockchain to improve IBD paper care, using collaborative participatory design involving patients, healthcare professionals, and health systems.

AI Diagnostic Technologies and the Gap in Colorectal Cancer Screening Participation.

AI augmented clinical diagnostic tools are the latest research focus in colorectal cancer (CRC) detection. While the opportunity presented by AI-enhanced CRC diagnosis is sound, this paper highlights how its effectiveness with respect to reducing CRC-related mortality and enhancing patient outcomes may be limited by the fact that patient participation remains extremely low globally. This paper builds a foundation to consider how human factors tend to contribute to low participation rates and suggests that a more nuanced socio-technical approach to the development, implementation and evaluation of AI systems that is sensitive to the psycho-social and cultural dimension of CRC may lead to tools that increase screening uptake.

Hospitalisation costs of primary liver cancer in Australia: evidence from a data-linkage study.

Objective This study aimed to estimate the public hospital costs associated with primary liver cancer (PLC) in the first and second years following the cancer diagnosis. Methods This study linked administrative datasets of patients diagnosed with PLC in Victoria, Australia, from January 2008 to December 2015. The health system perspective was adopted to estimate the direct healthcare costs associated with PLC, based on inpatient and emergency costs. Costs were estimated for the first 12 months and 12-24 months after the PLC diagnosis and expressed in 2017 Australian dollars (A$). The cost estimated was then extrapolated nationally. The linear mixed model with a Box-Cox transformation of the costs was used to explore the relationship between costs and patients' sociodemographic and clinical characteristics. Results For the first 12 months, the total and annual per-patient cost was A$211.4 million and A$63 664, respectively. Costs for the subsequent year were A$49.7 million and A$46 751, respectively. Regarding the cost extrapolation to Australia, the total cost was A$137 million for the first 12 months after notification and A$42.6 million for the period from 12 to 24 months. Higher costs per episode of care were mostly associated with older age, hepatocellular carcinoma type of PLC, metropolitan hospitals, and Asian birth region. Conclusion This study showed the public hospital admission and emergency costs associated with PLC and the substantial economic burden this cancer has placed on the Australian health system.

A Systematic Review and Narrative Synthesis of Health Economic Evaluations of Hepatocellular Carcinoma Screening Strategies.

OBJECTIVES: Many economic evaluations of hepatocellular carcinoma (HCC) screenings have been conducted; however, these vary substantially with regards to screening strategies, patient group, and setting. This review aims to report the current knowledge of the cost-effectiveness of screening and describe the published data. METHODS: We conducted a search of biomedical and health economic databases up to July 2020. We included full and partial health economic studies if they evaluated the costs or outcomes of HCC screening strategies. RESULTS: The review included 43 studies. Due to significant heterogeneity in key aspects across the studies, a narrative synthesis was conducted. Most studies reported using ultrasound or alpha fetoprotein as screening strategies. Screening intervals were mostly annual or biannual. Incidence, diagnostic performance, and health state utility values were the most critical parameters affecting the cost-effectiveness of screening. The majority of studies reported HCC screening to be cost-effective, with the biannual ultrasound + alpha fetoprotein standing out as the most cost-effective strategy. However, few studies considered the utilization rate, and none considered the diagnostic performance of ultrasound in the context of central adiposity. Computed tomography and magnetic resonance imaging were also evaluated, but its cost-effectiveness was still controversial. CONCLUSIONS: Although many studies suggested HCC screening was cost-effective, substantial limitations of the quality of these studies means the results should be interpreted with caution. Future modeling studies should consider the impact of central adiposity on the precision of ultrasound, real-world utilization rates and projections of increased HCC incidence.

Uptake of and Expenditure on Direct-Acting Antiviral Agents for Hepatitis C Treatment in Australia.

BACKGROUND: Direct-acting antiviral agents (DAAs) have revolutionised treatment for the hepatitis C virus (HCV). Currently, treatment costs between 20,000 and 80,000 Australian dollars ($A) per patient. The Australian Federal Government provided $A1 billion over 5 years to subsidise these drugs. OBJECTIVE: The aim of this paper was to evaluate the uptake and financial impact of DAA prescribing in Australia. METHODS: We undertook a retrospective analysis of Medicare prescription and expenditure data for March 2016 to August 2017. Prescription numbers and expenditure data were extracted from the Medicare Statistical Reports website. Numbers of prescriptions were converted to per capita rates. HCV prevalence measures were used to provide context to prescription rates. All costs were reported in $A, year 2017 values. RESULTS: Nationally, 211,184 DAA prescriptions were reimbursed. Whilst $A3.6 billion was expended through the Pharmaceutical Benefits Scheme, confidential pricing agreements precluded calculation of the precise cost. In 18 months, estimated expenditure greatly exceeded the $A1 billion in funding for 5 years. Nationally, the rate of prescriptions was 872/100,000 individuals. Prescription rates were highest in the Australian Capital Territory (1087/100,000) and lowest in Western Australia (625/100,000) despite HCV prevalence being comparable to the national rate in both regions. CONCLUSIONS: Uptake of DAAs has been enthusiastic in the first 18 months of this funding agreement. However, the lack of transparency due to the confidential special pricing agreements means actual government expenditure is unknown. Post-marketing review by the Pharmaceutical Benefits Advisory Committee may enable renegotiation of DAA prices with the sponsors.

How Can Information and Communication Technology Improve Healthcare Inequalities and Healthcare Inequity? The Concept of Context Driven Care.

Advances in medicine have improved health and healthcare for many around the world. The challenge is achieving the best outcomes of health via healthcare delivery to every individual. Healthcare inequalities exist within a country and between countries. Health information technology (HIT) has provided a mean to deliver equal access to healthcare services regardless of social context and physical location. In order to achieve better health outcomes for every individual, socio-cultural factors, such as literacy and social context need to consider. This paper argues that HIT while improves healthcare inequalities by providing access, might worsen healthcare inequity. In order to improve healthcare inequity using HIT, this paper argues that we need to consider patients and context, and hence the concept of context driven care. To improve healthcare inequity, we need to conceptually consider the patient's view and methodologically consider design methods that achieve participatory outcomes.

Socio-Technical Considerations for the Use of Blockchain Technology in Healthcare.

Blockchain technology is often considered as the fourth industrial revolution that will change the world. The enthusiasm of the transformative nature of blockchain technology has infiltrated healthcare. Blockchain is often seen as the much needed and perfect technology for healthcare, addressing the difficult and complex issues of security and inter-operability. More importantly, the "value" and trust-based system can deliver automated action and response via its smart contract mechanism. Healthcare, however, is a complex system. Health information technology (HIT) so far, has not delivered its promise of transforming healthcare due to its complex socio-technical and context sensitive interaction. The introduction of blockchain technology will need to consider a whole range of socio-technical issues in order to improve the quality and safety of patient care. This paper presents a discussion on these socio-technical issues. More importantly, this paper argues that in order to achieve the best outcome from blockchain technology, there is a need to consider a clinical transformation from "information" to "value " and trust. This paper argues that urgent research is needed to address these socio-technical issues in order to facilitate best outcomes for blockchain in healthcare. These socio-technical issues must then be further evaluated by means of working prototypes in the medical domain in coming years.

Qualitative Research for Patient Safety Using ICTs: Methodological Considerations in the Technological Age.

Considerable effort and resources have been dedicated to improving the quality and safety of patient care through health information systems, but there is still significant scope for improvement. One contributing factor to the lack of progress in patient safety improvement especially where technology has been deployed relates to an over-reliance on purely objective, quantitative, positivist research paradigms as the basis for generating and validating evidence of improvement. This paper argues the need for greater recognition and accommodation of evidence of improvement generated through more subjective, qualitative and pragmatic research paradigms to aid patient safety especially where technology is deployed. This paper discusses how acknowledging the role and value of more subjective ontologies and pragmatist epistemologies can support improvement science research. This paper illustrates some challenges and benefits from adopting qualitative research methods in patient safety improvement projects, particularly focusing challenges in the technological era. While adopting methods that can more readily capture, analyse and interpret direct user experiences, attitudes, insights and behaviours in their contextual settings, patient safety can be enhanced 'on the ground' and errors reduced and/or mitigated, challenges of using these methods with the younger "technologically-centred" healthcare professionals and patients needs to recognised.

Exploring Socio-Technical Insights for Safe Nursing Handover.

Current efforts to improve nursing handover frequently use prescriptive approaches based on research evidence of handover issues within a single nursing ward or nursing specialty. Despite reported handover improvement, few studies adequately consider the transferability of results to other nursing handover environments or acknowledge the unique attributes that supported sustained improvement. With the increasing diffusion of electronic tools it has become even more critical to ensure that socio-technical issues that may impact on the quality and safety of nursing handovers are identified. This paper describes a qualitative research project that examined nursing handover in three different wards - General Medicine, General Surgery and Department of Emergency Medicine in a tertiary teaching hospital. Through conduct of a detailed analysis of nursing handover processes, this paper highlights the similarities and differences in the handover among the three different wards and presents five key socio-technical insights to support safe nursing handover.

Clinical Supervision of Interns: Understanding the View of Interns and the Potential of ICT to Deliver Supervision for Safer Patient Care.

Clinical communication and clinical supervision of junior healthcare professionals are identified as the two most common preventable factors to reduce medical errors. While multiple strategies have been implemented to improve clinical communication, clinical supervision has not attracted as much attention. This is in part due to the lack of understanding of clinical supervision. Furthermore, there is a lack of exploration of information communication technology (ICT) in assisting the delivery of clinical supervision from the perspective of users (i.e. junior clinicians). This paper presents a study to understand clinical supervision from the perspective of medical and pharmacy interns. The important elements of good clinical supervisors and good clinical supervision have been presented in this paper based on our study. More importantly, our results suggest a distinction between good supervisors and good supervisions. Both these factors impact on patient safety. Through discussion of user requirements of good supervision by users (interns), this paper then explores and presents a conceptual framework to assist in the discussion and design of ICT by healthcare organisations to improve clinical supervision of interns and therefore improve patient safety.

Pokémon-Go: Why Augmented Reality Games Offer Insights for Enhancing Public Health Interventions on Obesity-Related Diseases.

Stimulating widespread interests of the population to participate in behavioural changes through information and technology has been an aim of much health informatics research. The recent widespread participation of the augmented reality game Pokémon Go which encourages exercises, provides significant insights into the potential of information technology to improve healthcare intervention on obesity-related disease. Does Pokémon Go point to another way of achieving health benefits using mobile devices? This paper analyses the features of Pokémon Go in relation to potential health benefits. This paper suggests from the perspective of a user on changes to the game that potentially could help with obesity, mental health cardiovascular health and vitamin D deficiencies. While the impact of augmented reality games on improving exercises might be substantial, the question of sustainability and likely long-term health outcomes remain debatable. The rapid uptake of Pokémon Go by the population around the world, however, should serve as a useful lesson for information and technological design to improve outcomes obesity-related diseases in the future.

Complex Clinical Communication Practices: How Do Information Receivers Assimilate and Act Upon Information for Patient Care?

Improving clinical communication is imperative to improving the quality and safety of patient care. Significant efforts have been made to improve clinical communication and patient safety, guided by the mantra of "the right information, to the right person, in the right place, at the right time". The design and implementation of information communication technologies (ICTs) has been considered as one of the major developments in improving patient care. Clinical communication in today's clinical practice is complex and involves multi-disciplinary teams using different types of media for information transfer. This paper argues that traditional communication theories fail to adequately capture and describe contemporary clinical communicative practices or to provide insight into how information transferred is actually assimilated and/or utilised for patient care. This paper argues for the need to more fully consider underlying assumptions about the role of information in clinical communication and to recognise how the attributes of information receivers, especially where ICTs are deployed influence outcomes. The paper presents a discussion regarding the need to consider information receivers as the foundation for clinical communication improvement and future design and development of ICTs to improve patient care.

Pokémon Go: Ubiquitous Computing Delivering Better Health or Co-Incidental Health Benefits from Technology Use? A Participatory Observational Study.

Stimulating sustained behavioural change through information and technology has been an aim of much health informatics research. Traditional approaches use technology to mediate communications between health professionals and patients. More recent lifestyle technologies engage the patient directly with information and advice - but what of the phenomena that is Pokémon Go - does it point to another way of achieving health benefits through fun? This paper aims to explore some of the conceptual questions for health informatics stimulated by the phenomenal popularity of Pokémon Go. The paper is grounded analysis of data generated through a preliminary participatory observational study in Australia.

Costs associated with hereditary haemochromatosis in Australia: a cost-of-illness study.

Objective The aim of the present study was to assess health sector, other sector and time-related (productivity) costs associated with hereditary haemochromatosis from societal, government and patient perspectives for the Australian setting. Methods A national web-based survey of people with haemochromatosis was conducted between November 2013 and February 2015. Participants completed a health survey and resource use diaries. Costs were calculated using a bottom-up approach and calculated in 2015 Australian dollars. Results Cost data were available for 157 participants. From a societal perspective, the estimated annual cost of haemochromatosis was A$274million. The mean (95% confidence interval) cost for symptomatic patients was almost threefold greater than that of asymptomatic patients (A$10030 (7705-12670) vs A$3701 (2423-5296) respectively). Health sector and productivity-related time loss were the main cost drivers. When extrapolating costs to the Australian population level, asymptomatic haemochromatosis accounted for higher costs than symptomatic haemochromatosis (A$183million vs A$91million), reflecting the low clinical penetrance estimate used. Total costs increased when higher clinical penetrance estimates were used. Conclusion The present cost-of-illness study, the first to be published for haemochromatosis, found that although costs were substantial, they could be decreased by reducing clinical penetrance. Development of cost-effective strategies to increase early diagnosis is likely to result in better health outcomes for patients and lower total costs. What is known about the topic? To date, no cost-of-illness study has been conducted for haemochromatosis. Previous economic work in this area has relied on cost estimates based on expert opinion. What does the paper add? This paper provides the first cost estimates for haemochromatosis for the Australian population. These estimates, calculated using a bottom-up approach, were extrapolated to the population level based on the most robust epidemiological estimates available for the Australian population. What are the implications for practitioners? Population screening programs have been widely suggested as an approach to reduce clinical penetrance; however, the lack of high-quality economic analyses has been cited as a barrier to implementation. The present study provides the most robust cost estimates to date, which may be used to populate economic models. In addition, the present study illustrates that reducing clinical penetrance of haemochromatosis is likely to result in substantial reductions in cost.

Cost-Effectiveness of Different Population Screening Strategies for Hereditary Haemochromatosis in Australia.

INTRODUCTION: Amongst populations of northern European ancestry, HFE-associated haemochromatosis is a common genetic disorder characterised by iron overload. In the absence of treatment, excess iron is stored in parenchymal tissues, causing morbidity and mortality. Population screening programmes may increase early diagnosis and reduce associated disease. No contemporary health economic evaluation has been published for Australia. The objective of this study was to identify cost-effective screening strategies for haemochromatosis in the Australian setting. METHODS: A Markov model using probabilistic decision analysis was developed comparing four adult screening strategies: the status quo (cascade and incidental screening), genotyping with blood and buccal samples and transferrin saturation followed by genotyping (TfS). Target populations were males (30 years) and females (45 years) of northern European ancestry. Cost-effectiveness was estimated from the government perspective over a lifetime horizon. RESULTS: All strategies for males were cost-effective compared to the status quo. The incremental costs (standard deviation) associated with genotyping (blood) were AUD7 (56), TfS AUD15 (45) and genotyping (buccal) AUD63 (56), producing ICERs of AUD1673, 4103 and 15,233/quality-adjusted life-year (QALY) gained, respectively. For females, only the TfS strategy was cost-effective, producing an ICER of AUD10,195/QALY gained. Approximately 3% of C282Y homozygotes were estimated to be identified with the status quo approach, compared with 40% with the proposed screening strategies. CONCLUSION: This model estimated that genotyping and TfS strategies are likely to be more cost-effective screening strategies than the status quo.

Population Screening for Hereditary Haemochromatosis in Australia: Construction and Validation of a State-Transition Cost-Effectiveness Model.

INTRODUCTION: HFE-associated haemochromatosis, the most common monogenic disorder amongst populations of northern European ancestry, is characterised by iron overload. Excess iron is stored in parenchymal tissues, leading to morbidity and mortality. Population screening programmes are likely to improve early diagnosis, thereby decreasing associated disease. Our aim was to develop and validate a health economics model of screening using utilities and costs from a haemochromatosis cohort. METHODS: A state-transition model was developed with Markov states based on disease severity. Australian males (aged 30 years) and females (aged 45 years) of northern European ancestry were the target populations. The screening strategy was the status quo approach in Australia; the model was run over a lifetime horizon. Costs were estimated from the government perspective and reported in 2015 Australian dollars ($A); costs and quality-adjusted life-years (QALYs) were discounted at 5% annually. Model validity was assessed using goodness-of-fit analyses. Second-order Monte-Carlo simulation was used to account for uncertainty in multiple parameters. RESULTS: For validity, the model reproduced mortality, life expectancy (LE) and prevalence rates in line with published data. LE for C282Y homozygote males and females were 49.9 and 40.2 years, respectively, slightly lower than population rates. Mean (95% confidence interval) QALYS were 15.7 (7.7-23.7) for males and 14.4 (6.7-22.1) for females. Mean discounted lifetime costs for C282Y homozygotes were $A22,737 (3670-85,793) for males and $A13,840 (1335-67,377) for females. Sensitivity analyses revealed discount rates and prevalence had the greatest impacts on outcomes. CONCLUSION: We have developed a transparent, validated health economics model of C282Y homozygote haemochromatosis. The model will be useful to decision makers to identify cost-effective screening strategies.