Indigenous data governance approaches applied in research using routinely collected health data: a scoping review.

Globally, there is a growing acknowledgment of Indigenous Peoples' rights to control data related to their communities. This is seen in the development of Indigenous Data Governance standards. As health data collection increases, it's crucial to apply these standards in research involving Indigenous communities. Our study, therefore, aims to systematically review research using routinely collected health data of Indigenous Peoples, understanding the Indigenous Data Governance approaches and the associated advantages and challenges. We searched electronic databases for studies from 2013 to 2022, resulting in 85 selected articles. Of these, 65 (77%) involved Indigenous Peoples in the research, and 60 (71%) were authored by Indigenous individuals or organisations. While most studies (93%) provided ethical approval details, only 18 (21%) described Indigenous guiding principles, 35 (41%) reported on data sovereignty, and 28 (33%) addressed consent. This highlights the increasing focus on Indigenous Data Governance in utilising health data. Leveraging existing data sources in line with Indigenous data governance principles is vital for better understanding Indigenous health outcomes.

Physical function patient-reported outcomes among adolescent and young adult cancer survivors: A systematic review.

BACKGROUND: The physical challenges faced by adolescents and young adults (AYA) after a cancer diagnosis may be different from those experienced by paediatric and older adult cancer patients. Patient-reported outcome measures (PROMs) are valuable tools that can be useful in exploring the experiences of AYAs and identifying important issues, recurrent themes and areas to potentially improve quality of life. OBJECTIVE: We compared patient-reported physical function outcomes between AYAs diagnosed with cancer and non-cancer controls. METHOD: This paper builds on a scoping review published in early 2023 and focuses on PROMs related to physical function. RESULTS: This systematic review includes 16 studies that measured and reported on physical function PROMs in AYA cancer survivors compared with their cancer-free peers. Of these studies, 14 found that physical function in AYA survivors was significantly worse. This paper also includes a meta-analysis conducted on 5 studies using the EORTC-QLQ-C30 to measure physical function, which found that physical function score was an average of 7.03 (95% CI: -10.21, -3.86) points lower in the AYA cancer group, compared to their cancer free-peers, a difference that is clinically meaningful. CONCLUSIONS: The results overwhelmingly demonstrate that AYAs post a cancer diagnosis have worse health-related quality of life from a physical function perspective than their cancer-free peers, providing a compelling argument for the need to address this issue. All but one of the studies were cross-sectional, which highlights the need for further assessment of this group longitudinally throughout their cancer journey.

Patient Reported Fatigue Among Adolescent and Young Adult Cancer Patients Compared to Non-Cancer Patients: A Systematic Review and Meta-Analysis.

Adolescent and young adult (AYA) cancer patients and survivors are a growing population due to more frequent diagnoses and improved survival. Fatigue is a common symptom experienced by cancer patients and it is often missed by health care professionals. Patient reported outcome measures (PROMs) can assist in evaluating patient reported fatigue. This systematic review aims to determine if AYA cancer patients report more fatigue than AYAs who have not been diagnosed with cancer. We used a subset of articles from a larger review that searched PubMed, EMBASE, CINAHL, and PsycINFO to determine which PROMs and domains are currently being used to evaluate AYA cancer. This study identified 175 articles related to PROMs in the AYA cancer population. Articles with PROMs reporting on fatigue/vitality were used in this review. From the original 175 articles, we identified 8 fatigue/vitality articles for this review. All eight articles found an increase in fatigue/decrease in vitality in the AYA cancer population compared to healthy controls. A meta-analysis was performed on four articles that used the same PROM tool (EORTC QLQ-C30). This found a statistically significant and clinically meaningful increase in mean fatigue of 12.5 95% confidence interval: 3.3-21.8 points (scale 0-100, higher number indicates more fatigue) in the AYA cancer group compared to healthy noncancer controls. Fatigue in the AYA cancer population is a significant issue, it is often undetected and underreported, and early interventions are needed to prevent the negative subsequent sequelae.

Mental health patient-reported outcomes among adolescents and young adult cancer survivors: A systematic review.

BACKGROUND: Adolescent and young adult (AYA) cancer patients and survivors face significant mental health challenges throughout their cancer journey that are different to those faced by children and older adults. Patient-reported outcome measures (PROMs) can be used to explore the experiences of AYAs, and to identify important issues and areas for potential improvement in quality of life. OBJECTIVE: We aimed to compare patient reported mental health outcomes between AYAs diagnosed with cancer and non-cancer controls. METHOD: We built on a larger systematic review of AYA cancer PROMs which searched PubMed, EMBASE, CINAHL and PsychINFO. This review identified 175 articles, which were filtered to those reporting on mental health and including a non-cancer control group. RESULTS: We identified 12 eligible studies. Seven studies (58%) found those diagnosed with cancer reported poorer mental health than the non-cancer controls. The remaining five (42%) studies found no significant difference in severity or prevalence of mental health between the AYA cancer cohort and the healthy control group. Most (83%) were cross-sectional studies, highlighting the need for further longitudinal assessment of this group throughout their journey. CONCLUSIONS: The mental health outcomes feature conflicting results and illustrate the need for larger studies to characterise discrepancies.

The impact of transition to a digital hospital on medication errors (TIME study).

Digital transformation in healthcare improves the safety of health systems. Within our health service, a new digital hospital has been established and two wards from a neighbouring paper-based hospital transitioned into the new digital hospital. This created an opportunity to evaluate the impact of complete digital transformation on medication safety. Here we discuss the impact of transition from a paper-based to digital hospital on voluntarily reported medication incidents and prescribing errors. This study utilises an interrupted time-series design and takes place across two wards as they transition from a paper to a digital hospital. Two data sources are used to assess impacts on medication incidents and prescribing errors: (1) voluntarily reported medication incidents and 2) a chart audit of medications prescribed on the study wards. The chart audit collects data on procedural, dosing and therapeutic prescribing errors. There are 588 errors extracted from incident reporting software during the study period. The average monthly number of errors reduces from 12.5 pre- to 7.5 post-transition (p < 0.001). In the chart audit, 5072 medication orders are reviewed pre-transition and 3699 reviewed post-transition. The rates of orders with one or more error reduces significantly after transition (52.8% pre- vs. 15.7% post-, p < 0.001). There are significant reductions in procedural (32.1% pre- vs. 1.3% post-, p < 0.001), and dosing errors (32.3% pre- vs. 14% post-, p < 0.001), but not therapeutic errors (0.6% pre- vs. 0.7% post-, p = 0.478). Transition to a digital hospital is associated with reductions in voluntarily reported medication incidents and prescribing errors.

STI and HIV testing: examining factors that influence uptake among domestic Australian-born, domestic overseas-born and international tertiary students studying in Australia.

OBJECTIVES: Sexual health knowledge among international students in Australia is lower than domestic students, however, little is known about what factors affect the uptake of STI testing, nor if there are differences for overseas-born domestic students. METHODS: We included sexually active respondents from a survey of university students in Australia (N = 3,075). Multivariate regression and mediation analyses investigated associations of STI and HIV testing with STI and HIV knowledge respectively, sexual risk behaviour and demographics, including comparisons among: domestic Australian-born, domestic overseas-born, and international students. RESULTS: STI and HIV knowledge was positively associated with STI and HIV testing respectively (STI OR = 1.13, 95% CI: 1.09, 1.16; HIV OR = 1.37, 95% CI: 1.27, 1.48). STI knowledge was significantly lower for international than domestic Australian-born students (10.8 vs. 12.2 out of 16), as was STI testing (32% vs. 38%); the difference in knowledge accounted for half the difference in STI testing rates between these two groups. International students from Southern Asia, and Eastern Asia reported the lowest STI testing rates. HIV testing was highest amongst international students from Africa and North America. Higher sexual risk behaviour, younger age, and identifying as gay or bisexual were positively associated with higher STI and HIV testing rates. CONCLUSIONS: Our study supports greater investment and commitment by universities for the provision of sexual health education that can promote access to testing to improve the health of their students.

Immediate and Ongoing Impact of COVID-19 on Chlamydia Treatment in Australia.

BACKGROUND: The COVID-19 pandemic has impacted the sexual health and well-being of individuals, directly through risk of contracting COVID-19, and indirectly through government lockdowns. Government restrictions were especially strict and long-lasting in Australia, they also varied by state, offering an interesting opportunity to study the impacts of varying restrictions. This study compares the impact of the COVID-19 pandemic and resulting restrictions on chlamydia treatment prescriptions during 2020, through to July 2021 between different states and demographic groups in Australia. METHODS: The rate of prescriptions per 100,000 population filled each month from January 2017 to July 2021 from Australia's Pharmaceutical Benefits Scheme for Azithromycin with a restricted indication to treat Chlamydia trachomatis was used to measure chlamydia treatment. The impact of COVID-19 lockdowns was modeled using an interrupted time-series Poisson regression model. RESULTS: The data included 520,025 prescriptions to treat chlamydia, averaging 37.5 prescriptions per month per 100,000 population. Prescriptions declined 26% in April to May 2020 when initial COVID-19 lockdowns began in Australia; prescriptions increased in the following months but remained on average 21% below prepandemic (2017-2019) levels through to July 2021. Prescriptions declined the most in 1 Australian state, Victoria, both in the initial lockdown and the following period; generally, states with more COVID-19 cases saw bigger reductions in prescriptions. CONCLUSIONS: This is the first study to examine how treatment for chlamydia in Australia was impacted by the COVID-19 pandemic and restrictions not only in the immediate-term, but also ongoing up to July 2021, providing important information for planning for sexual health services in future pandemics.

Patient reported outcome measure domains and tools used among adolescents and young adults with cancer: A scoping review.

Adolescent and young adult (AYA) cancer patients and survivors are growing and face with distinct issues from paediatric and older cancer survivors. Hence it is important the issues they encounter are measured using appropriate Patient Reported Outcome Measures (PROMs). We searched PubMed, EMBASE, CINAHL, and PsycINFO for articles including: (1) AYAs (ages 15-39), (2) Malignant neoplasms, and (3) PROMs. This resulted in 3566 unique articles, 523 were included for full text review, of which 175 were included. These studies included 203 distinct tools to measure PROMs across 31 domains. Physical function was most frequently measured domain, followed by social, emotional and mental health. The most commonly used tools were the EORTC QLQ-C30, HADS and SF-36. PROMs used in AYA cancer patients is a complex topic, this comprehensive review serves as a useful reference for researchers, clinicians and health services who want to better understand, and improve, outcomes among their patients.

Understanding the Digital Disruption of Health Care: An Ethnographic Study of Real-Time Multidisciplinary Clinical Behavior in a New Digital Hospital.

BACKGROUND: Understanding electronic medical record (EMR) implementation in digital hospitals has focused on retrospective "work as imagined" experiences of multidisciplinary clinicians, rather than "work as done" behaviors. Our research question was "what is the behavior of multidisciplinary clinicians during the transition to a new digital hospital?" OBJECTIVES: The aim of the study is to: (1) Observe clinical behavior of multidisciplinary clinicians in a new digital hospital using ethnography. (2) Develop a thematic framework of clinical behavior in a new digital hospital. METHODS: The setting was the go-live of a greenfield 182-bed digital specialist public hospital in Queensland, Australia. Participants were multidisciplinary clinicians (allied health, nursing, medical, and pharmacy). Clinical ethnographic observations were conducted between March and April 2021 (approximately 1 month post-EMR implementation). Observers shadowed clinicians in real-time performing a diverse range of routine clinical activities and recorded any clinical behavior related to interaction with the digital hospital. Data were analyzed in two phases: (1) content analysis using machine learning (Leximancer v4.5); (2) researcher-led interpretation of the text analytics to generate contextual meaning and finalize themes. RESULTS: A total of 55 multidisciplinary clinicians (41.8% allied health, 23.6% nursing, 20% medical, 14.6% pharmacy) were observed across 58 hours and 99 individual patient encounters. Five themes were derived: (1) Workflows for clinical documentation; (2) Navigating a digital hospital; (3) Digital efficiencies; (4) Digital challenges; (5) Patient experience. There was no observed harm attributable to the digital transition. Clinicians primarily used blended digital and paper workflows to achieve clinical goals. The EMR was generally used seamlessly. New digital workflows affected clinical productivity and caused frustration. Digitization enabled multitasking, clinical opportunism, and benefits to patient safety; however, clinicians were hesitant to trust digital information. CONCLUSION: This study improves our real-time understanding of the digital disruption of health care and can guide clinicians, managers, and health services toward digital transformation strategies based upon "work as done."

A Comparison of Leximancer Semi-automated Content Analysis to Manual Content Analysis: A Healthcare Exemplar Using Emotive Transcripts of COVID-19 Hospital Staff Interactive Webcasts.

Effective consumer centred healthcare incorporates consumer and clinician perspectives into decision making, in addition to traditional quantitative measures. This information is usually captured in qualitative data that requires manual analysis. Healthcare systems often lack resources to systematically incorporate qualitative feedback into decision making. Semi-automated content analysis tools, such as Leximancer, provide an efficient and objective alternative to time consuming manual content analysis (MCA). Literature on the validity of Leximancer in healthcare is sparse. This study seeks to validate Leximancer against MCA on a broad emotive conversational dataset gathered in a healthcare setting. At the outset of the COVID-19 pandemic, a large Australian hospital and health service conducted interactive webcasts with staff to provide updates and answer questions. A manual thematic analysis and a Leximancer content analysis were conducted independently on 20 webcast transcripts. The findings were compared, along with the time required to the complete each analysis. The Leximancer analysis identified nine concepts, while the manual analysis identified 12 concepts. The Leximancer concepts mapped to five of the concepts identified in the manual analysis, which accounted for 74% of mentions tagged in the text through the manual analysis. Leximancer missed concepts which required an emotional or contextual interpretation. The Leximancer analysis took 21 hours (excluding time to learn the program), compared to 73 hours for the manual analysis. Semi-automated content analysis provides an efficient alternative to manual qualitative data analysis, shifting it from a small-scale research activity to a more routine operational activity, albeit with some limitations. This is critical to be able to utilise at scale the rich narratives from consumers and clinicians in healthcare decision making.

STI and HIV knowledge and testing: a comparison of domestic Australian-born, domestic overseas-born and international university students in Australia.

University students usually consist of young people from culturally and linguistically diverse backgrounds, and a group recognised as being at increased risk of STI. This study found lower levels of STI knowledge and STI testing among international students and to a lesser extent, domestic overseas-born students, compared with domestic Australian-born students. International students exhibited lower risk sexual behaviour but were more likely to have had a HIV test than domestic students. This diversity in sexual health knowledge, sexual health services utilisation and sexual experience indicates the need for a variety of public health approaches to improve sexual health.

Toilet Paper, Minced Meat and Diabetes Medicines: Australian Panic Buying Induced by COVID-19.

The COVID-19 pandemic has impacted the management of non-communicable diseases in health systems around the world. This study aimed to understand the impact of COVID-19 on diabetes medicines dispensed in Australia. Publicly available data from Australia's government subsidised medicines program (Pharmaceutical Benefits Scheme), detailing prescriptions by month dispensed to patients, drug item code and patient category, was obtained from January 2016 to November 2020. This study focused on medicines used in diabetes care (Anatomical Therapeutical Chemical code level 2 = A10). Number of prescriptions dispensed were plotted by month at a total level, by insulins and non-insulins, and by patient category (general, concessional). Total number of prescriptions dispensed between January and November of each year were compared. A peak in prescriptions dispensed in March 2020 was identified, an increase of 35% on March 2019, compared to average growth of 7.2% in previous years. Prescriptions dispensed subsequently fell in April and May 2020 to levels below the corresponding months in 2019. These trends were observed across insulins, non-insulins, general and concessional patient categories. The peak and subsequent dip in demand have resulted in a small unexpected overall increase for the period January to November 2020, compared to declining growth for the same months in prior years. The observed change in consumer behaviour prompted by COVID-19 and the resulting public health measures is important to understand in order to improve management of medicines supply during potential future waves of COVID-19 and other pandemics.