Long-term health conditions among household families in Aotearoa New Zealand: cross-sectional analysis of integrated Census and administrative data.

AIM: Little is known about the extent to which families in Aotearoa New Zealand are affected by long-term health conditions (HCs). This study aimed to explore the rates of nine selected HCs among New Zealand family members within the same household. METHOD: Linked population and administrative health data were obtained for families living in the same household according to the 2013 New Zealand Census (N=1,043,172). Health data (2008-2013) were used to ascertain whether people in these families (N=3,137,517) received treatment or services for nine selected HCs: cancer, chronic obstructive pulmonary disease, heart disease, diabetes, dementia, gout, stroke, traumatic brain injury (TBI), or mental health/behaviour conditions (MHBCs). RESULTS: Over 60% of families included at least one person with a HC, and this rate was higher among multi-generation families (73.9%). The most common HCs were MHBCs (39.4% of families), diabetes (16.0%) and TBI (13.9%). At the highest level of socio-economic deprivation, 57.6% of children aged under 18 years lived with a family member who had a HC. CONCLUSION: Three in five New Zealand household families included someone with at least one of nine selected HCs, with differences in the proportion affected according to family composition, socio-economic status and an individual's ethnicity. This suggests that there are a substantial number of people at risk of the poor outcomes associated with the experience of HCs within their family.

Comparison of outcomes of the 50-year follow-up of a randomized trial assessed by study questionnaire and by data linkage: The CONCUR study.

BACKGROUND/AIMS: Self-reported questionnaires on health status after randomized trials can be time-consuming, costly, and potentially unreliable. Administrative data sets may provide cost-effective, less biased information, but it is uncertain how administrative and self-reported data compare to identify chronic conditions in a New Zealand cohort. This study aimed to determine whether record linkage could replace self-reported questionnaires to identify chronic conditions that were the outcomes of interest for trial follow-up. METHODS: Participants in 50-year follow-up of a randomized trial were asked to complete a questionnaire and to consent to accessing administrative data. The proportion of participants with diabetes, pre-diabetes, hyperlipidaemia, hypertension, mental health disorders, and asthma was calculated using each data source and agreement between data sources assessed. RESULTS: Participants were aged 49 years (SD = 1, n = 424, 50% male). Agreement between questionnaire and administrative data was slight for pre-diabetes (kappa = 0.10), fair for hyperlipidaemia (kappa = 0.27), substantial for diabetes (kappa = 0.65), and moderate for other conditions (all kappa >0.42). Administrative data alone identified two to three times more cases than the questionnaire for all outcomes except hypertension and mental health disorders, where the questionnaire alone identified one to two times more cases than administrative data. Combining all sources increased case detection for all outcomes. CONCLUSIONS: A combination of questionnaire, pharmaceutical, and laboratory data with expert panel review were required to identify participants with chronic conditions of interest in this follow-up of a clinical trial.

Associations of hospital-treated infections with subsequent dementia: nationwide 30-year analysis.

Infections, which can prompt neuroinflammation, may be a risk factor for dementia1-5. More information is needed concerning associations across different infections and different dementias, and from longitudinal studies with long follow-ups. This New Zealand-based population register study tested whether infections antedate dementia across three decades. We identified individuals born between 1929 and 1968 and followed them from 1989 to 2019 (n = 1,742,406, baseline age = 21-60 years). Infection diagnoses were ascertained from public hospital records. Dementia diagnoses were ascertained from public hospital, mortality and pharmaceutical records. Relative to individuals without an infection, those with an infection were at increased risk of dementia (hazard ratio 2.93, 95% confidence interval 2.68-3.20). Associations were evident for dementia diagnoses made up to 25-30 years after infection diagnoses. Associations held after accounting for preexisting physical diseases, mental disorders and socioeconomic deprivation. Associations were evident for viral, bacterial, parasitic and other infections, and for Alzheimer's disease and other dementias, including vascular dementia. Preventing infections might reduce the burden of neurodegenerative conditions.

Cardiovascular outcomes 50 years after antenatal exposure to betamethasone: Follow-up of a randomised double-blind, placebo-controlled trial.

BACKGROUND: Antenatal corticosteroids for women at risk of preterm birth reduce neonatal morbidity and mortality, but there is limited evidence regarding their effects on long-term health. This study assessed cardiovascular outcomes at 50 years after antenatal exposure to corticosteroids. METHODS AND FINDINGS: We assessed the adult offspring of women who participated in the first randomised, double-blind, placebo-controlled trial of antenatal betamethasone for the prevention of neonatal respiratory distress syndrome (RDS) (1969 to 1974). The first 717 mothers received 2 intramuscular injections of 12 mg betamethasone or placebo 24 h apart and the subsequent 398 received 2 injections of 24 mg betamethasone or equivalent volume of placebo. Follow-up included a health questionnaire and consent to access administrative data sources. The co-primary outcomes were the prevalence of cardiovascular risk factors (any of hypertension, hyperlipidaemia, diabetes mellitus, gestational diabetes mellitus, or prediabetes) and age at first major adverse cardiovascular event (MACE) (cardiovascular death, myocardial infarction, coronary revascularisation, stroke, admission for peripheral vascular disease, and admission for heart failure). Analyses were adjusted for gestational age at entry, sex, and clustering. Of 1,218 infants born to 1,115 mothers, we followed up 424 (46% of survivors; 212 [50%] female) at mean (standard deviation) age 49.3 (1.0) years. There were no differences between those exposed to betamethasone or placebo for cardiovascular risk factors (159/229 [69.4%] versus 131/195 [67.2%]; adjusted relative risk 1.02, 95% confidence interval [CI] [0.89, 1.18;]; p = 0.735) or age at first MACE (adjusted hazard ratio 0.58, 95% CI [0.23, 1.49]; p = 0.261). There were also no differences in the components of these composite outcomes or in any of the other secondary outcomes. Key limitations were follow-up rate and lack of in-person assessments. CONCLUSIONS: There is no evidence that antenatal corticosteroids increase the prevalence of cardiovascular risk factors or incidence of cardiovascular events up to 50 years of age. Established benefits of antenatal corticosteroids are not outweighed by an increase in adult cardiovascular disease.

Dementia, dementia's risk factors and premorbid brain structure are concentrated in disadvantaged areas: National register and birth-cohort geographic analyses.

INTRODUCTION: Dementia risk may be elevated in socioeconomically disadvantaged neighborhoods. Reasons for this remain unclear, and this elevation has yet to be shown at a national population level. METHODS: We tested whether dementia was more prevalent in disadvantaged neighborhoods across the New Zealand population (N = 1.41 million analytic sample) over a 20-year observation. We then tested whether premorbid dementia risk factors and MRI-measured brain-structure antecedents were more prevalent among midlife residents of disadvantaged neighborhoods in a population-representative NZ-birth-cohort (N = 938 analytic sample). RESULTS: People residing in disadvantaged neighborhoods were at greater risk of dementia (HR per-quintile-disadvantage-increase = 1.09, 95% confidence interval [CI]:1.08-1.10) and, decades before clinical endpoints typically emerge, evidenced elevated dementia-risk scores (CAIDE, LIBRA, Lancet, ANU-ADRI, DunedinARB; ß's 0.31-0.39) and displayed dementia-associated brain structural deficits and cognitive difficulties/decline. DISCUSSION: Disadvantaged neighborhoods have more residents with dementia, and decades before dementia is diagnosed, residents have more dementia-risk factors and brain-structure antecedents. Whether or not neighborhoods causally influence risk, they may offer scalable opportunities for primary dementia prevention.

Case identification of non-traumatic brain injury in youth using linked population data.

BACKGROUND: Population-level administrative data provides a cost-effective means of monitoring health outcomes and service needs of clinical populations. This study aimed to present a method for case identification of non-traumatic brain injury in population-level data and to examine the association with sociodemographic factors. METHODS: An estimated resident population of youth aged 0-24 years was constructed using population-level datasets within the New Zealand Integrated Data Infrastructure. A clinical consensus committee reviewed the International Classification of Diseases Ninth and Tenth Editions codes and Read codes for inclusion in a case definition. Cases were those with at least one non-traumatic brain injury code present in the five years up until 30 June 2018 in one of four databases in the Integrated Data Infrastructure. Rates of non-traumatic brain injury were examined, both including and excluding birth injury codes and across age, sex, ethnicity, and socioeconomic deprivation groups. RESULTS: Of the 1 579 089 youth aged 0-24 years on 30 June 2018, 8154 (0.52%) were identified as having one of the brain injury codes in the five-years to 30 June 2018. Rates of non-traumatic brain injury were higher in males, children aged 0-4 years, Maori and Pacific young people, and youth living with high levels of social deprivation. CONCLUSION: This study presents a comprehensive method for case identification of non-traumatic brain injury using national population-level administrative data.

Public opinion on global COVID-19 vaccine procurement and distribution policies: A nationally representative survey in Aotearoa New Zealand 2022.

The World Health Organisation and many health experts have regarded vaccine nationalism, a "my country first" approach to vaccines procurement, as a critical pandemic response failure. However, few studies have considered public opinion in this regard. This study gauged public support for vaccine nationalism and vaccine internationalism in a representative survey in New Zealand (N = 1,135). Support for vaccine internationalism (M (mean rating) = 3.64 on 5-point scales) was significantly stronger than for vaccine nationalism (M = 3.24). Additionally, support for openly sharing COVID-19 vaccine manufacturing knowledge and technology (M = 4.17 on 5-point scales) was significantly stronger than support for safeguarding vaccine manufacturers' intellectual property (M = 2.66). The public also supported a utilitarian approach that would see distributions based on need (M = 3.76 on 5-point scales) over an equal proportional international distribution (M = 3.16). Akin to the few preceding studies, the present observations suggest that the public is likely to be more supportive of pandemic responses that are globally equitable and long-term orientated. Our findings have substantial implications for pandemic preparedness as the congruence or lack thereof of public vaccine-related values with government policies can affect public trust, which, in turn, can affect public cooperation. It may pay for governments to invest in proactive public engagement efforts before and during a pandemic to discuss critical ethical issues and inequities in global vaccine procurement and distributions.

Kumanu Tangata: the aftermatch study - protocol to examine the health outcomes of high-level male rugby union players using linked administrative data.

There is increasing interest in the potential long-term outcomes of participation in contact and collision sports, driven by evidence of higher rates of neurodegenerative diseases among former athletes. Recent research has capitalised on large-scale administrative health data to examine health outcomes in contact sport athletes. However, there is limited research on outcomes associated with participation in rugby union, a contact sport with a relatively high incidence of head trauma and musculoskeletal injuries. Additionally, there is scope to investigate a greater range of health outcomes using large, population-based administrative data. The Kumanu Tangata project is a retrospective cohort study that will use linked information from the New Zealand Rugby Register and health records within a comprehensive deidentified whole-population administrative research database known as the Integrated Data Infrastructure. First-class male rugby union players (N=13 227) will be compared with a general population comparison group (N=2 438 484; weighting will be applied due to demographic differences) on a range of mortality and morbidity outcomes (neurodegenerative diseases, musculoskeletal conditions, chronic physical conditions, mental health outcomes). A range of player-specific variables will also be investigated as risk factors. Analyses will consist primarily of Cox proportional hazards models. Ethics approval for the study has been granted by the Auckland Health Research Ethics Committee (Ref. AH23203). Primary research dissemination will be via peer-reviewed journal articles.

Proximity of alcohol outlets and presentation to hospital by young people after self-harm: A retrospective geospatial study using the integrated data infrastructure.

OBJECTIVES: There is a well-established association between alcohol use, misuse, intoxication and self-harm, the latter of which is associated with suicide. This study aimed to better understand the association between proximity to alcohol outlets and the likelihood of young people presenting to hospital following self-harm. METHODS: This was a nationwide retrospective geospatial study using data from the New Zealand Integrated Data Infrastructure using population-level data for 10-29-year-olds for the 2018 and 2017 calendar years. Presentations to hospital following self-harm were identified using the national minimum data set. Proximity to alcohol outlets was defined in road network distance (in kilometres) and ascertained using Integrated Data Infrastructure geospatial data. Alternative measures of proximity were employed in sensitivity analyses. Complete-case two-level random intercept logistic regression models were used to estimate the relationship between alcohol outlet proximity and hospital presentation for self-harm. Adjusted models included sex, age, ethnicity, area-level deprivation, urbanicity and distance to nearest medical facility. Analyses were also stratified by urbanicity. RESULTS: Of the 1,285,368 individuals (mean [standard deviation] age 20.0 [5.9] years), 7944 (0.6%) were admitted to hospital for self-harm. Overall, the odds of presenting to hospital for self-harm significantly decreased as the distance from the nearest alcohol outlet increased, including in adjusted models (adjusted odds ratio 0.980; 95% confidence interval = [0.969-0.992]); the association was robust to changes in the measure of alcohol proximity. The effect direction was consistent across all categorisations of urbanicity, but only statistically significant in large urban areas and rural areas. CONCLUSIONS: The findings of this study show a clear association between young people's access to alcohol outlets and presentation to hospital for self-harm and may provide a mandate for government policies and universal interventions to reduce young people's access to alcohol outlets. Further research regarding causative mechanisms is needed.

Suicides, drug poisonings, and alcohol-related deaths cluster with health and social disadvantage in 4.1 million citizens from two nations.

BACKGROUND: Deaths from suicides, drug poisonings, and alcohol-related diseases ('deaths of despair') are well-documented among working-age Americans, and have been hypothesized to be largely specific to the U.S. However, support for this assertion-and associated policies to reduce premature mortality-requires tests concerning these deaths in other industrialized countries, with different institutional contexts. We tested whether the concentration and accumulation of health and social disadvantage forecasts deaths of despair, in New Zealand and Denmark. METHODS: We used nationwide administrative data. Our observation period was 10 years (NZ = July 2006-June 2016, Denmark = January 2007-December 2016). We identified all NZ-born and Danish-born individuals aged 25-64 in the last observation year (NZ = 1 555 902, Denmark = 2 541 758). We ascertained measures of disadvantage (public-hospital stays for physical- and mental-health difficulties, social-welfare benefit-use, and criminal convictions) across the first nine years. We ascertained deaths from suicide, drugs, alcohol, and all other causes in the last year. RESULTS: Deaths of despair clustered within a population segment that disproportionately experienced multiple disadvantages. In both countries, individuals in the top 5% of the population in multiple health- and social-service sectors were at elevated risk for deaths from suicide, drugs, and alcohol, and deaths from other causes. Associations were evident across sex and age. CONCLUSIONS: Deaths of despair are a marker of inequalities in countries beyond the U.S. with robust social-safety nets, nationwide healthcare, and strong pharmaceutical regulations. These deaths cluster within a highly disadvantaged population segment identifiable within health- and social-service systems.

Measuring Maori Health, Wellbeing, and Disability in Aotearoa Using a Web-Based Survey Methodology.

High-quality evidence on the prevalence and impact of health, wellbeing, and disability among Maori, and other Indigenous peoples, is crucial for mitigating health inequities. Current surveys are predominantly centred within a biomedical paradigm, with the constructs mismatched with Indigenous worldviews. We aimed to develop and deploy an accessible and culturally grounded survey exploring Maori health, wellbeing, and disability using a Kaupapa Maori Research methodology. An extensive codesign process with Maori community partners interrogated all aspects of the design to ensure the process and outcomes met the needs of Maori. A large-scale, nationally representative survey of people of Maori descent was conducted. We used a multi-modal deployment approach that included online and alternate methods of completion. Our analysis included a novel dual-weighting system to ensure generalisability of results to the national Maori population. This achieved a survey of 7230 participants, a sample size comparable with government-administered surveys. The response rate was 11.1%, with 7.3% opting for alternate methods. A high completion rate of 93.4% was observed. This approach demonstrated a high level of engagement, resulting in an unprecedented collection of Maori health, wellbeing, and disability data. This highlights the importance of Indigenous codesign for ensuring accessible and culturally appropriate survey methods.

Social isolation from childhood to mid-adulthood: is there an association with older brain age?

BACKGROUND: Older brain age - as estimated from structural MRI data - is known to be associated with detrimental mental and physical health outcomes in older adults. Social isolation, which has similar detrimental effects on health, may be associated with accelerated brain aging though little is known about how different trajectories of social isolation across the life course moderate this association. We examined the associations between social isolation trajectories from age 5 to age 38 and brain age assessed at age 45. METHODS: We previously created a typology of social isolation based on onset during the life course and persistence into adulthood, using group-based trajectory analysis of longitudinal data from a New Zealand birth cohort. The typology comprises four groups: 'never-isolated', 'adult-only', 'child-only', and persistent 'child-adult' isolation. A brain age gap estimate (brainAGE) - the difference between predicted age from structural MRI date and chronological age - was derived at age 45. We undertook analyses of brainAGE with trajectory group as the predictor, adjusting for sex, family socio-economic status, and a range of familial and child-behavioral factors. RESULTS: Older brain age in mid-adulthood was associated with trajectories of social isolation after adjustment for family and child confounders, particularly for the 'adult-only' group compared to the 'never-isolated' group. CONCLUSIONS: Although our findings are associational, they indicate that preventing social isolation, particularly in mid-adulthood, may help to avert accelerated brain aging associated with negative health outcomes later in life.

Anthropause appreciation, biophilia, and ecophilosophical contemplations amidst a global pandemic.

In 2020, COVID-19 mitigation measures, including lockdowns and travel bans to curtail disease transmission, inadvertently led to an "Anthropause" - a unique global pause to anthropogenic activities. While there was a spike in ecological studies measuring Anthropause effects on environmental indicators, people's experiences of the Anthropause or its potential to inspire change were hardly considered. Hence, we aimed to measure people's appreciation of the environmental outcomes of the Anthropause, ecophilosophical contemplations about the pandemic, and experiences of lockdown-triggered biophilia (human's innate love for and draw towards nature) and test the hypothesis that these experiences would be consistently more prominent among the already environmentally inclined. To that end, we developed and tested three measures on a representative sample of 993 New Zealanders. Anthropause Appreciation received the highest overall mean ratings, followed by Lockdown-Biophilia and Eco-Contemplation. Pre-existing pro-environmental dispositions and behaviours did not consistently influence our three measures as expected. Demographic variables had little influence, while experiences of financial and mental health impacts due to COVID-19 had no influence. We interpreted the limited influence of explanatory variables as indicative of a degree of uniformity in people's experiences. High appreciation of Anthropause benefits suggests that the public may be supportive of policies and ways of living that can lead to similar outcomes post-pandemic - offering environmental policymakers and communicators a basis for action. Ecophilosophical contemplations and biophilic draw among the public suggest an awareness of the significance of the human-nature relationship - offering a symbolic global keystone for communicating and advocating conservation and the many values of pauses in life to connect with nature. Building women's environmental leadership capabilities and the ongoing greening of Christianity may be essential steps for global post-pandemic environmental behaviour transformations.

Regional variation in sudden unexpected death in infancy in New Zealand.

AIM: To estimate the relative risk of sudden unexpected death in infancy (SUDI) by district health board (DHB) in New Zealand after adjustment for socio-economic deprivation, ethnicity and other demographic factors. METHODS: We conducted a population-based cohort study using data from the Integrated Data Infrastructure, a large research database containing linked data from a range of government agencies. The study population was all live births and their mothers in New Zealand from 2012 to 2018. The exposure of interest was DHB. The outcome was SUDI. RESULTS: There were 418 068 live births in New Zealand from 2012 to 2018, and of these 415 401 (99.4%) had valid DHB data. There was considerable variation in the proportion of infants in each DHB living in the most deprived decile varying from 4.5% in Nelson, West Coast and Canterbury to 29.7% in Counties Manukau. There were 267 SUDI cases, giving an overall rate of 0.64/1000 live births during the study period (2012-2018). The SUDI rate varied from 1.11/1000 in Northland to 0.30/1000 in Waitemata and Auckland. Counties Manukau had the largest number of deaths (n = 54; rate = 1.08/1000). Five DHB regions had increased risk of SUDI compared to the reference group but, after adjustment, no DHB was significantly increased. CONCLUSIONS: This study found that there is marked variation in SUDI risk by DHB, but this is explained by socio-economic and demographic variation within DHBs. This study emphasises the importance of the contribution of social determinants of health to SUDI.

Are trajectories of social isolation from childhood to mid-adulthood associated with adult depression or suicide outcomes.

PURPOSE: Social isolation has been shown to have negative effects on mental health outcomes though little is known about trajectories across the life course. We examined the relationship between trajectory groups and selected mental health outcomes in mid-adulthood. METHODS: We previously created a typology of social isolation based on onset during the life course and persistence into adulthood, using group-based trajectory analysis of longitudinal data from a New Zealand birth cohort. The typology comprises four groups: 'never-isolated', 'adult-only', 'child-only', and 'persistent (child-adult) isolation'. We undertook logistic regression analyses of three mental health outcomes with trajectory group as the predictor, adjusting for sex and a range of familial and child-behavioural factors. RESULTS: Lifetime suicide attempt, and depression and suicide ideation in mid-adulthood were each associated with adult-only but not child-only social isolation. Depression in mid-adulthood was also associated with persistent child-adult social isolation. CONCLUSION: Although our findings are associational and not causal, they indicate that interrupting persistent social isolation may help to prevent adult depression whereas halting adult social isolation may ameliorate both depression and suicide outcomes.

Mental health inequities for Maori youth: a population-level study of mental health service data.

AIM: To examine specialist mental health service, hospital discharge, and pharmaceutical dispensing data for emotional conditions (anxiety, depression), substance use, and self-harm for Maori compared to non-Maori/non-Pasifika (NMNP) youth. METHODS: A novel population-level case identification method using New Zealand's Integrated Data Infrastructure for 232,845 Maori and 627,891 NMNP aged 10-24 years. Descriptive statistics on mental health conditions were generated and stratified by Maori/NMNP. Unadjusted and adjusted risk ratios (RRs) of mental health conditions were generated using generalised linear regression. RESULTS: Maori were less likely to be identified for anxiety (ARR=0.88; 95% CI 0.85-0.90) or depression (ARR=0.92; 95% CI 0.90-0.95) than NMNP. They were more likely to be identified for substance problems (ARR)=2.66; 95% CI 2.60-2.71) and self-harm (ARR=1.56; 95% CI 1.50-1.63). Maori living in high deprivation areas were significantly more likely to be identified for substance problems, but less likely for emotional conditions, than Maori in least deprived areas. CONCLUSION: Despite known high levels of mental health concerns for rangatahi Maori, administrative data suggests significant under-reporting, assessment, and treatment of emotional conditions relative to NMNP. These differences were exacerbated by deprivation. Maori were more likely to be referred to services for externalised symptoms of distress (substance use and self-harm).

Adaption and implementation of the engage programme within the early childhood curriculum.

Poor self-regulation has been associated with an array of adverse outcomes including difficulties with school transition, educational attainment, and social functioning in childhood, and employment, mental health, physical health, relationships, and criminal activity in adulthood. Enhancing Neurobehavioural Gains with the Aid of Games and Exercises (ENGAGE) is a play-based intervention fostering the development of self-regulation in pre-schoolers and has led to improvements within the home setting. The aim for this study was to ascertain whether ENGAGE can be implemented within an Early Childhood Education (ECE) group setting and whether this leads to improved self-regulation. This trial has been registered with the Australian New Zealand Clinical Trials Registry (ANZCTR); trial number ACTRN12622000364774; trial web address: https://www.anzctr.org.au/ACTRN12622000364774.aspx . 668 children aged 3-5 years and their teachers, across 28 ECEs participated. Children's self-regulation skills were assessed via scores on the Hyperactivity, Aggression, and Attention Problems subscales of BASC-2. Results indicted no significant changes in self-regulation skills across a 10-week waitlist period. Following 10 weeks of the ENGAGE programme, significant improvements in self-regulation were reported, and these were maintained at 2- and 6-month follow-up. These findings indicate that ENGAGE translates well into the ECE setting and has the potential to have population-based impacts which could lead to more positive societal outcomes.

Medication dispensing among Maori and non-Maori screened for preschool ADHD.

AIMS: To investigate whether tamariki Maori screened for attention-deficit/hyperactivity disorder (ADHD) concerns in the B4 School Check (B4SC) between 2011 to 2018 are as likely to receive ADHD medication as non-Maori children. METHODS: Using population-level data from the Integrated Data Infrastructure, we investigated whether ADHD medication dispensing differed for tamariki Maori screened for ADHD concerns relative to non-Maori children. Analyses were also stratified by area-level deprivation and urban/rural profile of residence. RESULTS: In our cohort of 414,171 children, 2.8% of Maori and 1.6% of non-Maori were screened as showing ADHD concerns. Among those with ADHD concerns, tamariki Maori had a lower likelihood of ADHD medication dispensing following the B4SC (10.8%) relative to non-Maori children (14.9%), but this effect was only significant among those living in the most deprived quintile and outside of major urban areas. CONCLUSION: Our study indicates that inequities to accessing ADHD treatment may exist for tamariki Maori living in highly deprived neighbourhoods or outside of major urban areas. Further research is needed to understand what the specific barriers may be to accessing ADHD medication treatment for Maori in these areas.

'As Long as It's Used for Beneficial Things': An Investigation of non-Maori, Maori and Young People's Perceptions Regarding the Research use of the Aotearoa New Zealand Integrated Data Infrastructure (IDI).

The Aotearoa New Zealand Integrated Data Infrastructure (IDI) is a national database containing a wide range of data about people and households. There is limited information about public views regarding its use for research.A qualitative study was undertaken to examine the views of forty individuals attending a large hospital in Auckland, including those of Maori ethnicity and young people. Semi-structured interview data were analysed using Braun and Clarke's method of thematic analysis.Seven key themes emerged: 1) Limited knowledge about medical data held in national databases; 2) Conditional support for the use of the IDI, including for research; 3) Concerns regarding the misuse of IDI data; 4) The importance of privacy; 5) Different views regarding consent for use of data for research; 6) Desire for access to personal data and the results of research; and 7) Concerns regarding third party and commercial use. Young people and those of Maori ethnicity were more wary of data misuse than others.Although there is reasonable support for the secondary use of public administrative data in the IDI for research, there is more work to be done to ensure ethical and culturally appropriate use of this data via improved consent privacy management processes and researcher training.

Different Approaches to requesting Consent for Routine data linkage in Neonatal follow-up (ACORN): protocol for a 2×2 factorial randomised trial.

INTRODUCTION: Routinely collected data can be linked to research data to create a rich dataset and inform practice. However, consent is normally required to link identifiable data. Reported rates of consent to data linkage for children ranged from 21% to 96%, but no studies have investigated different approaches to seeking consent for data linkage for school-age children. METHODS AND ANALYSIS: The Approaches to Consent for Routine Data Linkage in Neonatal Follow-up (ACORN) trial is a 2×2 factorial randomised trial to assess whether, for children who participated in neonatal randomised trials (pre-hypoglycaemia Prevention with Oral Dextrose Gel (hPOD), hPOD and The Impact of Protein Intravenous Nutrition on Development in Extremely Low Birth Weight Babies (ProVIDe)) and are approached to participate in an in-person assessment at 6-7 years of age, parental consent to data linkage is higher if consent is sought (1) after the in-person assessment (delayed) or concurrently and (2) for health and education data combined or separately. The primary outcomes will be rates of consent to linkage of (1) either health or education data and (2) both health and education data. A pilot study indicates the potentially available cohort size of 2110 (80% follow-up of the neonatal trial cohorts) would be adequate to detect an absolute difference of 6%-5%-4% from a baseline consent rate of 70%-85%-90%, respectively (2-tailed alpha 0.05, 90% power). With at least 1136 participants, the ACORN trial would have 90% power to detect an absolute difference of 5% in the primary outcome for each factor, assuming a consent rate of 90% in the control groups and alpha 0.05. Data are categorical and will be presented as number and per cent. The effects of factors will be tested using generalised linear models and presented as ORs and 95% CIs. ETHICS AND DISSEMINATION: Ethics approval by the New Zealand Health and Disability Ethics Committee (19/STH/202). Dissemination will be via peer-reviewed publications, scientific meetings, educational sessions and public fora. TRIAL REGISTRATION NUMBER: ACTRN12621000571875 (Australian New Zealand Clinical Trials Registry).