Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

Selective under-representation of Pacific peoples in population estimates for health indicator measurements in Aotearoa New Zealand misinforms policy making.

BACKGROUND: The Census of Populations and Dwellings' is the five yearly population count of Aotearoa New Zealand. Best available populations (BAP) are subnational projections based on census data and demographic assumptions developed for healthcare planning and funding allocation but are also used as the denominator for health indicator monitoring. Pacific people are systematically undercounted, but the impact on health statistics is not well studied. For COVID-19 vaccination coverage, health service user (HSU) data were considered a more reliable denominator than BAP but introduced new biases. We aimed to understand how the choice of denominator population impacts estimates of population size and health system performance for Pacific people at a local level. METHODS: We described how declining census response rates affected population data quality. We compared BAP and HSU data at district level. For the indicators 'access to primary care' and 'cervical cancer screening uptake' we replaced currently used BAP denominators with HSU and examined the impact for different ethnic groups in different geographic districts. RESULTS: Overall Census 2018 response declined by 10%, but for Maori and Pacific people by 21% and 23%, respectively. This inequitably affected BAP accuracy. Census undercount was highest in the district with the largest Pacific populations, where HSU exceeded BAP most. Notably, 'access to primary care' for Pacific people in this district consistently exceeds 100%. Using BAP, both health indicators are currently estimated as highest for Pacific people compared to other ethnic groups, but when based on HSU, they dropped to lowest. Similar, but less pronounced trends occurred in other districts. Changes in trends over time for both indicators coincided mostly with adjustments in BAP, rather than changes in the numerators. CONCLUSIONS: The current use of BAP denominators for health statistics does not enable reliable monitoring of key health indicators for Pacific people. HSU denominators are also unsuitable for monitoring health. Exploring the feasibility of a real-time population register is strongly recommended as a new, transparent, way of obtaining more reliable, timely population data to guide policymaking and underpin a more equitable health system under the health reforms. Meanwhile, reporting of ethnic specific outcomes need to include a clear assessment of the potential for bias due to inaccurate population estimates.

Use of Genomics to Track Coronavirus Disease Outbreaks, New Zealand.

Real-time genomic sequencing has played a major role in tracking the global spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), contributing greatly to disease mitigation strategies. In August 2020, after having eliminated the virus, New Zealand experienced a second outbreak. During that outbreak, New Zealand used genomic sequencing in a primary role, leading to a second elimination of the virus. We generated genomes from 78% of the laboratory-confirmed samples of SARS-CoV-2 from the second outbreak and compared them with the available global genomic data. Genomic sequencing rapidly identified that virus causing the second outbreak in New Zealand belonged to a single cluster, thus resulting from a single introduction. However, successful identification of the origin of this outbreak was impeded by substantial biases and gaps in global sequencing data. Access to a broader and more heterogenous sample of global genomic data would strengthen efforts to locate the source of any new outbreaks.

Genomic Evidence of In-Flight Transmission of SARS-CoV-2 Despite Predeparture Testing.

Since the first wave of coronavirus disease in March 2020, citizens and permanent residents returning to New Zealand have been required to undergo managed isolation and quarantine (MIQ) for 14 days and mandatory testing for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). As of October 20, 2020, of 62,698 arrivals, testing of persons in MIQ had identified 215 cases of SARS-CoV-2 infection. Among 86 passengers on a flight from Dubai, United Arab Emirates, that arrived in New Zealand on September 29, test results were positive for 7 persons in MIQ. These passengers originated from 5 different countries before a layover in Dubai; 5 had negative predeparture SARS-CoV-2 test results. To assess possible points of infection, we analyzed information about their journeys, disease progression, and virus genomic data. All 7 SARS-CoV-2 genomes were genetically identical, except for a single mutation in 1 sample. Despite predeparture testing, multiple instances of in-flight SARS-CoV-2 transmission are likely.

Building sustainable health data capability in Aotearoa New Zealand: opportunities and challenges highlighted through COVID-19.

Aotearoa New Zealand should take the opportunity created by national health reforms to learn from experience with COVID-19, creating a world-class health system that utilises data and modelling effectively. For this to happen, we must build upon a foundation of equity, ethics, trust and transparency and ensure we have the right tools and processes in place for our researchers and practitioners to translate insights into better outcomes for all.

The impact of Covid-19 vaccination in Aotearoa New Zealand: A modelling study.

Aotearoa New Zealand implemented a Covid-19 elimination strategy in 2020 and 2021, which enabled a large majority of the population to be vaccinated before being exposed to the virus. This strategy delivered one of the lowest pandemic mortality rates in the world. However, quantitative estimates of the population-level health benefits of vaccination are lacking. Here, we use a validated mathematical model of Covid-19 in New Zealand to investigate counterfactual scenarios with differing levels of vaccine coverage in different age and ethnicity groups. The model builds on earlier research by adding age- and time-dependent case ascertainment, the effect of antiviral medications, improved hospitalisation rate estimates, and the impact of relaxing control measures. The model was used for scenario analysis and policy advice for the New Zealand Government in 2022 and 2023. We compare the number of Covid-19 hospitalisations, deaths, and years of life lost in each counterfactual scenario to a baseline scenario that is fitted to epidemiological data between January 2022 and June 2023. Our results estimate that vaccines saved 6650 (95% credible interval [4424, 10180]) lives, and prevented 74500 [51000, 115400] years of life lost and 45100 [34400, 55600] hospitalisations during this 18-month period. Making the same comparison before the benefit of antiviral medications is accounted for, the estimated number of lives saved by vaccines increases to 7604 [5080, 11942]. Due to inequities in the vaccine rollout, vaccination rates among Maori were lower than in people of European ethnicity. Our results show that, if vaccination rates had been equitable, an estimated 11%-26% of the 292 Maori Covid-19 deaths that were recorded in this time period could have been prevented. We conclude that Covid-19 vaccination greatly reduced health burden in New Zealand and that equity needs to be a key focus of future vaccination programmes.

Maori and the Integrated Data Infrastructure: an assessment of the data system and suggestions to realise Maori data aspirations [Te Maori me te Integrated Data Infrastructure: he aromatawai i te punaha raraunga me nga marohitanga e poipoia ai nga wawata raraunga Maori].

The Statistics New Zealand Integrated Data Infrastructure (IDI) is a collection of de-identified whole-population administrative datasets. Researchers are increasingly utilising the IDI to answer pressing social and policy research questions. Our work provides an overview of the IDI, associated issues for Maori (the Indigenous peoples of New Zealand), and steps to realise Maori data aspirations. We first introduce the IDI including what it is and how it was developed. We then move to an overview of Maori Data Sovereignty. We consider the main issues with the IDI for Maori including technical issues and problems with ethnic identifiers, deficit-framed work, community involvement, consent, social licence, further data linkage, offshore access, and barriers to access for Maori. We finish with a set of recommendations around how to improve the IDI for Maori, making sure that Maori can get the most out of administrative data for our communities. These include the need to build data researcher capacity and capability for Maori; work with hapori Maori to increase utilisation; change accountability mechanisms, including greater co-governance of data; adequately fund alternatives; or potentially even abolishing the IDI and starting again.

Effectiveness of COVID-19 vaccines against hospitalisation, death and infection over time in Aotearoa New Zealand: a retrospective cohort study.

AIMS: This study aimed to evaluate the effectiveness of COVID-19 vaccines in preventing COVID-19 outcomes when the Omicron variant was predominant in Aotearoa New Zealand. METHODS: We conducted a retrospective cohort study using routinely available data (8 December 2020-28 February 2023). We evaluated the vaccine effectiveness (VE) of COVID-19 vaccines using the Cox proportional-hazards model, adjusting for covariates. RESULTS: The VE against COVID-19 hospitalisation (VEH) for the second booster dose compared to no vaccination was found to be 81.8% (95% confidence interval [95% CI]: 73.6-87.5) after 1 month post-vaccination. After 4 months, VEH was 72.2% (95% CI: 58.5-81.4), and after 6 months VEH was 49.0% (95% CI: 7.9-71.8). Similarly, VEH decreased after the first booster dose (1-month VEH=81.6% [95% CI: 75.6-86.1]; 2 months VEH=74.7% [95% CI: 68.2-79.9]; and 6 months VEH=57.4% [95% CI: 45.8-66.6]). VE against COVID-19 death (VED) was 92.9% (95% CI: 82.1-97.2) 2 months after the first booster vaccination, with VED being sustained until months 5 and 6 (VED=87.2%; 95% CI: 67.4-94.9). The VE after the second dose of the vaccine against severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection (VEI) (real-time polymerase chain reaction [RT-PCR]) was sustained at 5 months post-vaccination (40.6%; 95% CI: 25.6-52.5). CONCLUSION: We provide a comprehensive quantification of both VE and VE waning. These findings can guide policymakers to help evaluate the COVID-19 vaccination programme and minimise the effect of future COVID-19 in Aotearoa New Zealand.

Mortality risk among Autistic children and young people: A nationwide birth cohort study.

LAY ABSTRACT: Existing literature indicates that Autistic people have shorter life expectancy, but little is known about the mortality risk among Autistic children and young people (0-24 years). We used a 15-year nationwide birth cohort study to estimate the mortality risk among Autistic children and young people in Aotearoa/New Zealand. The study included 895,707 children and 11,919 (1.4%) were Autistic. We found that autism was associated with a significantly higher mortality risk compared to the non-Autistic population. In addition, we found that this risk was significantly higher among females compared to males and for those with a co-occurring intellectual disability. Increased efforts are required to better meet the health needs of this population.

The August 2020 COVID-19 outbreak in Aotearoa, New Zealand: Delayed contact tracing for Pacific people contributes to widening health disparities.

Background: After COVID-19 arrived in New Zealand, a national system was developed to improve the efficiency of contact tracing. The first outbreak was followed by a period of 'COVID-19 elimination', until a community outbreak occurred in August 2020. We describe the characteristics of cases and their contacts during this outbreak, focused on the results of contact tracing. Methods: COVID-19 case data from the national surveillance database were linked to contacts from the national contact tracing database. Demographic and clinical characteristics of cases, number of contacts, and timeliness of contact tracing were analysed by ethnicity. Findings: Most of the 179 cases were Pacific people (59%) or Maori (25%), living in areas of high socioeconomic deprivation, who had higher rates of comorbidity and accounted for almost all (21/22) hospitalisations, all 8 ICU admissions and all 3 deaths. Only 6% belonged to the European majority ethnic group. Of 2,528 registered contacts, 46% were Pacific, 14% Maori and 19% European. Only contacts that were reached were registered. Overall, 41% of contacts were reached within 4 days of onset of disease of the case, which was significantly lower for Pacific (31%) than for other ethnic groups. Interpretation: Our findings confirm the greater health burden that ethnic minorities face from COVID-19. The significant delay in the timeliness of care for Pacific people shows that the public health response was inequitable for those at highest risk. Tailored public health responses and better registration of marginalised groups are necessary to provide better access to services and to improve insights for optimal future outbreak management.

Herpes zoster vaccine effectiveness against herpes zoster and postherpetic neuralgia in New Zealand: a retrospective cohort study.

Background: Herpes zoster (HZ) and associated complications cause significant burden to older people. A HZ vaccination programme was introduced in Aotearoa New Zealand in April 2018 with a single dose vaccine for those aged 65 years and a four-year catch up for 66-80 year-olds. This study aimed to assess the 'real-world' effectiveness of the zoster vaccine live (ZVL) against HZ and postherpetic neuralgia (PHN). Methods: We conducted a nationwide retrospective matched cohort study from 1 April 2018 to 1 April 2021 using a linked de-identified patient level Ministry of Health data platform. A Cox proportional hazards model was used to estimate ZVL vaccine effectiveness (VE) against HZ and PHN adjusting for covariates. Multiple outcomes were assessed in the primary (hospitalised HZ and PHN - primary diagnosis) and secondary (hospitalised HZ and PHN: primary and secondary diagnosis, community HZ) analyses. A sub-group analysis was carried out in, adults ≥ 65 years old, immunocompromised adults, Maori, and Pacific populations. Findings: A total of 824,142 (274,272 vaccinated with ZVL matched with 549,870 unvaccinated) New Zealand residents were included in the study. The matched population was 93.4% immunocompetent, 52.2% female, 80.2% European (level 1 ethnic codes), and 64.5% were 65-74 years old (mean age = 71.1±5.0). Vaccinated versus unvaccinated incidence of hospitalised HZ was 0.16 vs. 0.31/1,000 person-years and 0.03 vs. 0.08/1000 person-years for PHN. In the primary analysis, the adjusted overall VE against hospitalised HZ and hospitalised PHN was 57.8% (95% CI: 41.1-69.8) and 73.7% (95% CI:14.0-92.0) respectively. In adults ≥ 65 years old, the VE against hospitalised HZ was 54.4% (95% CI: 36.0-67.5) and VE against hospitalised PHN was 75·5% (95% CI: 19.9-92.5). In the secondary analysis, the VE against community HZ was 30.0% (95% CI: 25.6-34.5). The ZVL VE against hospitalised HZ for immunocompromised adults was 51.1% (95% CI: 23.1-69.5), and PHN hospitalisation was 67.6% (95% CI: 9.3-88.4). The VE against HZ hospitalisation for Maori was 45.2% (95% CI: -23.2-75.6) and for Pacific Peoples was 52.2% (95% CI: -40.6 -83·7). Interpretation: ZVL was associated with a reduction in risk of hospitalisation from HZ and PHN in the New Zealand population. Funding: Wellington Doctoral Scholarship awarded to JFM.

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.

Herpes zoster vaccine safety in the Aotearoa New Zealand population: a self-controlled case series study.

In Aotearoa New Zealand, zoster vaccine live is used for the prevention of zoster and associated complications in adults. This study assessed the risk of pre-specified serious adverse events following zoster vaccine live immunisation among adults in routine clinical practice. We conducted a self-controlled case series study using routinely collected national data. We compared the incidence of serious adverse events during the at-risk period with the control period. Rate ratios were estimated using Conditional Poisson regression models. Falsification outcomes analyses were used to evaluate biases in our study population. From April 2018 to July 2021, 278,375 received the vaccine. The rate ratio of serious adverse events following immunisation was 0·43 (95% confidence interval [CI]: 0·37-0·50). There was no significant increase in the risk of cerebrovascular accidents, acute myocardial infarction, acute pericarditis, acute myocarditis, and Ramsay-Hunt Syndrome. The herpes zoster vaccine is safe in adults in Aotearoa New Zealand.

Intergenerational, integrative and intellectual Pacific properties and pathways for life (IPforLife): a study protocol.

Introduction Chronic disease such as cancer, cardiovascular, diabetes, mental health and obesity have debilitating effects on sufferers with impacts seen increasingly at a younger age. A whole-of-family approach to life-course research is essential to inform health and wellbeing policies and programmes that make a difference for children, youth, adults, and later in life. Aim The aim is to present the research protocol about a study to understand the impact of chronic conditions on families, with an emphasis on outcomes that have life-long benefits, and co-develop a sustainable and culturally centred life-course programme for overall health and wellbeing. Methods The qualitative study will assess the family, household and community strengths that allow people in the Tokelau community to thrive despite the challenges of living in households with chronic disease. A total of 200 participants will be involved in family group and stakeholder focus group interviews, digital storytelling and community-based participatory action workshops, and the implementation and evaluation of action plans. The study will be augmented by Pacific research models, and the New Zealand Health Research Council Pacific guidelines. Results Research findings will have implications for policy and primary health-care delivery, and the potential to upscale and construct life-enhancing pathways across the life-course. Discussion Understanding Tokelauan families' health status, exposure to health hazards, access to health services and medicines, and the strengths of the family unit and community that allows them to thrive despite the challenges of living with chronic conditions, can help to inform policy and practice, and achieve better health outcomes for them.

Genomic discrimination in New Zealand health and life insurance. AGenDA: Against Genomic Discrimination in Aotearoa.

Nil.

Patient perspectives on the use of health information.

AIM: This survey aimed to investigate patient perspectives, including preferences, needs and concerns, on the use of, and access to, individual healthcare information. METHOD: A mixed-methods cross-sectional survey of adult patients (n=1,377) in Waitemata District Health Board inpatient and outpatient services during November-December 2020. The survey was online and on paper and available in 10 languages. RESULTS: Over 80% of participants were comfortable with their health information being used across the scenarios presented (range: 81-89%). Maori were significantly more likely than non-Maori to be comfortable with their health information being combined with the health information of others to better understand population needs (p=0.006). The level of comfort with the use of individual health information was related to assurances that its use was for public good, data were stored securely, individual privacy was maintained, the information was accurate and there was communication on how it was used. DISCUSSION: This study has shown that most healthcare consumers are comfortable with the health service using their de-identified health information beyond their care if it benefits others.

The relationship between income poverty and child hospitalisations in New Zealand: Evidence from longitudinal household panel data and Census data.

BACKGROUND: Very little high quality evidence exists on the causal relationship between income poverty and childhood health. We provide a comprehensive overview of the association between household income poverty and hospitalisations for children. METHODS: We used New Zealand's Integrated Data Infrastructure (IDI) to link income poverty data from the Survey of Family, Income and Employment (SoFIE; n = 21,759 households) and the 2013 New Zealand Census (n = 523,302 households) to publicly funded hospital records of children aged 0-17 (SoFIE: n = 39,459; Census, n = 986,901). Poverty was defined as equivalised household income below 60% of the median income, calculated both before and after housing costs, and using both self-reported and tax-recorded income. RESULTS: Correlations for the association between income poverty and hospitalisation were small (ranging from 0.02 to 0.05) and risk ratios were less than 1.35 for all but the rarest outcome-oral health hospitalisation. Weak or absent associations were apparent across age groups, waves of data collection, cumulative effects, and for estimates generated from fixed effects models and random effect models adjusted for age and ethnicity. Alternative measures of deprivation (area-level deprivation and material deprivation) showed stronger associations with hospitalisations (risk ratios ranged from 1.27-2.55) than income-based poverty measures. CONCLUSION: Income poverty is at best weakly associated with hospitalisation in childhood. Measures of deprivation may have a stronger association. Income measures alone may not be sufficient to capture the diversity of household economic circumstances when assessing the poverty-health relationship.

Maori and Pacific people in New Zealand have a higher risk of hospitalisation for COVID-19.

AIMS: We aim to quantify differences in clinical outcomes from COVID-19 infection in Aotearoa New Zealand by ethnicity and with a focus on risk of hospitalisation. METHODS: We used data on age, ethnicity, deprivation index, pre-existing health conditions and clinical outcomes on 1,829 COVID-19 cases reported in New Zealand. We used a logistic regression model to calculate odds ratios for the risk of hospitalisation by ethnicity. We also considered length of hospital stay and risk of fatality. RESULTS: After controlling for age and pre-existing conditions, we found that Maori have 2.50 times greater odds of hospitalisation (95% CI 1.39-4.51) than non-Maori non-Pacific people. Pacific people have three times greater odds (95% CI 1.75-5.33). CONCLUSIONS: Structural inequities and systemic racism in the healthcare system mean that Maori and Pacific communities face a much greater health burden from COVID-19. Older people and those with pre-existing health conditions are also at greater risk. This should inform future policy decisions including prioritising groups for vaccination.

COVID-19 vaccine strategies for Aotearoa New Zealand: a mathematical modelling study.

Background: COVID-19 elimination measures, including border closures have been applied in New Zealand. We have modelled the potential effect of vaccination programmes for opening borders. Methods: We used a deterministic age-stratified Susceptible, Exposed, Infectious, Recovered (SEIR) model. We minimised spread by varying the age-stratified vaccine allocation to find the minimum herd immunity requirements (the effective reproduction number Reff<1 with closed borders) under various vaccine effectiveness (VE) scenarios and R0 values. We ran two-year open-border simulations for two vaccine strategies: minimising Reff and targeting high-risk groups. Findings: Targeting of high-risk groups will result in lower hospitalisations and deaths in most scenarios. Reaching the herd immunity threshold (HIT) with a vaccine of 90% VE against disease and 80% VE against infection requires at least 86•5% total population uptake for R0=4•5 (with high vaccination coverage for 30-49-year-olds) and 98•1% uptake for R0=6. In a two-year open-border scenario with 10 overseas cases daily and 90% total population vaccine uptake (including 0-15 year olds) with the same vaccine, the strategy of targeting high-risk groups is close to achieving HIT, with an estimated 11,400 total hospitalisations (peak 324 active and 36 new daily cases in hospitals), and 1,030 total deaths. Interpretation: Targeting high-risk groups for vaccination will result in fewer hospitalisations and deaths with open borders compared to targeting reduced transmission. With a highly effective vaccine and a high total uptake, opening borders will result in increasing cases, hospitalisations, and deaths. Other public health and social measures will still be required as part of an effective pandemic response. Funding: This project was funded by the Health Research Council [20/1018]. Research in context.

Estimated inequities in COVID-19 infection fatality rates by ethnicity for Aotearoa New Zealand.

AIMS: There is limited evidence as to how clinical outcomes of COVID-19 including fatality rates may vary by ethnicity. We aim to estimate inequities in infection fatality rates (IFR) in New Zealand by ethnicity. METHODS: We combine existing demographic and health data for ethnic groups in New Zealand with international data on COVID-19 IFR for different age groups. We adjust age-specific IFRs for differences in unmet healthcare need, and comorbidities by ethnicity. We also adjust for life expectancy reflecting evidence that COVID-19 amplifies the existing mortality risk of different groups. RESULTS: The IFR for Maori is estimated to be 50% higher than that of non-Maori, and could be even higher depending on the relative contributions of age and underlying health conditions to mortality risk. CONCLUSIONS: There are likely to be significant inequities in the health burden from COVID-19 in New Zealand by ethnicity. These will be exacerbated by racism within the healthcare system and other inequities not reflected in official data. Highest risk communities include those with elderly populations, and Maori and Pacific communities. These factors should be included in future disease incidence and impact modelling.