Privacy, Ethics and Information Sharing of New Zealand’s Integrated Data Infrastructure (IDI): A discussion of the issues, challenges and opportunities

Introduction New Zealand’s (NZ) Integrated Data Infrastructure (IDI) has rapidly expanded since our 2016 IPDLN conference update. Researchers have available a wide range of administrative and survey data. Even major earthquake damage to a Statistics NZ building in late 2016 has not halted progress with expanding the IDI and its usage. Objectives and Approach To provide an update on the current state of the IDI and its use by the NZ research community. To highlight some key areas that need further discussion because of the IDI’s rapid growth, especially concerning : • Privacy, regulation and governance: how to make progress within appropriate regulatory constraints, especially around maintaining confidentiality, data sovereignty, data ethics and data security. • Capacity building: what are the best ways to build multidisciplinary skills for new IDI users, share code and knowledge and what types of networking options work best? • Cross-sectoral data linkage: to maximise the value of the IDI. Results In the last two years there has been a rapid expansion of external datalabs with access to the IDI (now around 33) and with the number of researchers using these datalabs (around 650). This has resulted in many useful research outputs; but it has also highlighted some areas that need more consideration including: • Data sovereignty: NZ needs to ensure a strong role of Māori (Indigenous NZers) in data governance to ensure that IDI data are used to maximise reduction in health and social inequalities. • Options for assisting new IDI users and exploring the best ways of sharing code, knowledge and networking. • To maximise value there needs more focus on use of cross-sectoral data linkage (to better understand the impact of social determinants on long-term health). Conclusion/Implications There has been rapid expansion of the scope and use of the IDI in New Zealand. But to ensure the continuation of the success to date, even more attention needs to be paid to such issues as data governance and data protection

Anti-transpirant activity in xylem sap from flooded tomato (Lycopersicon esculentum Mill.) plants is not due to pH-mediated redistributions of root- or shoot-sourced ABA

In flooded soils, the rapid effects of decreasing oxygen availability on root metabolic activity are likely to generate many potential chemical signals that may impact on stomatal apertures. Detached leaf transpiration tests showed that filtered xylem sap, collected at realistic flow rates from plants flooded for 2 h and 4 h, contained one or more factors that reduced stomatal apertures. The closure could not be attributed to increased root output of the glucose ester of abscisic acid (ABA-GE), since concentrations and deliveries of ABA conjugates were unaffected by soil flooding. Although xylem sap collected from the shoot base of detopped flooded plants became more alkaline within 2 h of flooding, this rapid pH change of 0.5 units did not alter partitioning of root-sourced ABA sufficiently to prompt a transient increase in xylem ABA delivery. More shoot-sourced ABA was detected in the xylem when excised petiole sections were perfused with pH 7 buffer, compared with pH 6 buffer. Sap collected from the fifth oldest leaf of 'intact' well-drained plants and plants flooded for 3 h was more alkaline, by ~0.4 pH units, than sap collected from the shoot base. Accordingly, xylem [ABA] was increased 2-fold in sap collected from the fifth oldest petiole compared with the shoot base of flooded plants. However, water loss from transpiring, detached leaves was not reduced when the pH of the feeding solution containing 3-h-flooded [ABA] was increased from 6.7 to 7.1 Thus, the extent of the pH-mediated, shoot-sourced ABA redistribution was not sufficient to raise xylem [ABA] to physiologically active levels. Using a detached epidermis bioassay, significant non-ABA anti-transpirant activity was also detected in xylem sap collected at intervals during the first 24 h of soil flooding

Changing social inequalities in smoking, obesity and cause-specific mortality: Cross-national comparisons using compass typology

Background In many countries smoking rates have declined and obesity rates have increased, and social inequalities in each have varied over time. At the same time, mortality has declined in most high-income countries, but gaps by educational qualification persist—at least partially due to differential smoking and obesity distributions. This study uses a compass typology to simultaneously examine the magnitude and trends in educational inequalities across multiple countries in: a) smoking and obesity; b) smoking-related mortality and c) cause-specific mortality. Methods Smoking prevalence, obesity prevalence and cause-specific mortality rates (35–79 year olds by sex) in nine European countries and New Zealand were sourced from between 1980 and 2010. We calculated relative and absolute inequalities in prevalence and mortality (relative and slope indices of inequality, respectively RII, SII) by highest educational qualification. Countries were then plotted on a compass typology which simultaneously examines trends in the population average rates or odds on the x-axis, RII on the Y-axis, and contour lines depicting SII. Findings Smoking and obesity. Smoking prevalence in men decreased over time but relative inequalities increased. For women there were fewer declines in smoking prevalence and relative inequalities tended to increase. Obesity prevalence in men and women increased over time with a mixed picture of increasing absolute and sometimes relative inequalities. Absolute inequalities in obesity increased for men and women in Czech Republic, France, New Zealand, Norway, for women in Austria and Lithuania, and for men in Finland. Cause-specific mortality. Average rates of smoking-related mortality were generally stable or increasing for women, accompanied by increasing relative inequalities. For men, average rates were stable or decreasing, but relative inequalities increased over time. Cardiovascular disease, cancer, and external injury rates generally decreased over time, and relative inequalities increased. In Eastern European countries mortality started declining later compared to other countries, however it remained at higher levels; and absolute inequalities in mortality increased whereas they were more stable elsewhere. Conclusions Tobacco control remains vital for addressing social inequalities in health by education, and focus on the least educated is required to address increasing relative inequalities. Increasing obesity in all countries and increasing absolute obesity inequalities in several countries is concerning for future potential health impacts. Obesity prevention may be increasingly important for addressing health inequalities in some settings. The compass typology was useful to compare trends in inequalities because it simultaneously tracks changes in rates/odds, and absolute and relative inequality measures.Peer reviewe

The effect of the graft union on hormonal and ionic signalling between rootstocks and scions of grafted apple (Malus pumila L. Mill.)

The transport of chemical signals between rootstocks and grafted scions is implicated in the dwarfing capacity of apple (Malus pumila) rootstocks. This study investigated whether the intensity of putative ionic and hormonal signals between a dwarfing rootstock (M.9) and a semi-invigorating rootstock (MM.106) grafted with ‘Queen Cox’ scions was altered by the graft union. The capacity of rootstocks with different dwarfing potential for polar auxin transport (PAT) was also compared. Split-top pressure chambers were used to collect xylem sap samples at a range of flow rates from above and below the graft union in composite M.9 and MM.106 trees. Concentrations of hormones, anions and cations were quantified in expressed xylem sap. The effects of the graft union, flow rate and rootstock on xylem sap solute concentrations and deliveries were compared. Rootstocks of different dwarfing capacities maintained in micro-propagation were used to estimate and compare acropetal auxin transport; the velocity and intensity of PAT were determined using radiolabelled auxin. Sap osmolality and Ca++ concentrations were reduced by passage through the M.9 graft union at very low flow rates. At transpirational flow rates, Ca++ and Mg++ concentrations were increased, and those of Na+ and NO3- decreased, by passage through the graft union. Deliveries of anions and cations from roots into shoots of M.9 composite trees were always similar or greater to those of MM.106 composite trees. Sap zeatin and zeatin riboside concentrations were reduced above the graft in both rootstocks. No evidence was found that a sub-optimal supply of essential mineral ions was involved in the dwarfing effect of M.9. Root- and shoot-specific deliveries of ABA in M.9 composite trees were significantly higher compared to MM.106 trees, and the greater import of ABA correlated temporarily with earlier shoot growth termination in M.9 composite trees. Intensity of PAT through micro-propagated stem tissue was lower in the dwarfing rootstock compared to more invigorating rootstocks

Age disparities in lung cancer survival in New Zealand: The role of patient and clinical factors.

OBJECTIVE: Age is an important prognostic factor for lung cancer. However, no studies have investigated the age difference in lung cancer survival per se. We, therefore, described the role of patient-related and clinical factors on the age pattern in lung cancer excess mortality hazard by stage at diagnosis in New Zealand. MATERIALS AND METHODS: We extracted 22 487 new lung cancer cases aged 50-99 (median age = 71, 47.1 % females) diagnosed between 1 January 2006 and 31 July 2017 from the New Zealand population-based cancer registry and followed up to December 2019. We modelled the effect of age at diagnosis, sex, ethnicity, deprivation, comorbidity, and emergency presentation on the excess mortality hazard by stage at diagnosis, and we derived corresponding lung cancer net survival. RESULTS: The age difference in net survival was particularly marked for localised and regional lung cancers, with a sharp decline in survival from the age of 70. No identified factors influenced age disparities in patients with localised cancer. However, for other stages, females had a greater difference in survival between middle-age and older-age than males. Comorbidity and emergency presentation played a minor role. Ethnicity and deprivation did not influence age disparities in lung cancer survival. CONCLUSION: Sex and stage at diagnosis were the most important factors of age disparities in lung cancer survival in New Zealand

The impact of timely cancer diagnosis on age disparities in colon cancer survival

Objective We described the role of patient-related and clinical factors on age disparities in colon cancer survival among patients aged 50-99 using New Zealand population-based cancer registry data linked to hospitalisation data. Method We included 21,270 new colon cancer cases diagnosed between 1 January 2006 and 31 July 2017, followed up to end 2019. We modelled the effect of age at diagnosis, sex, ethnicity, deprivation, comorbidity, and emergency presentation on colon cancer survival by stage at diagnosis using flexible excess hazard regression models. Results The excess mortality in older patients was minimal for localised cancers, maximal during the first six months for regional cancers, the first eighteen months for distant cancers, and over the three years for missing stages. The age pattern of the excess mortality hazard varied according to sex for distant cancers, emergency presentation for regional and distant cancers, and comorbidity for cancer with missing stages. Ethnicity and deprivation did not influence age disparities in colon cancer survival. Conclusion Factors reflecting timeliness of cancer diagnosis most affected age-related disparities in colon cancer survival, probably by impacting treatment strategy. Because of the high risk of poor outcomes related to treatment in older patients, efforts made to improve earlier diagnosis in older patients are likely to help reduce age disparities in colon cancer survival in New Zealand

Linked data and inclusion health: Harmonised international data linkage to identify determinants of health inequalities

A recent article in The Lancet establishing the principles of inclusion health, highlighted substantial gaps in our understanding of the drivers of health inequalities in socially excluded groups such as people with a history of incarceration, people who experience homelessness, sex workers, people with mental illness, and people who inject drugs1. Cross-sectoral data linkage of electronic health records with services working with socially excluded groups was one of the key recommendations of this article. The magnitude of health disparities observed in people that experience social exclusion necessitates an international public health response and addressing the determinants of social exclusion has been identified as a key component of closing the gap of Indigenous disadvantage2. This symposium will establish data linkage as a key component of the inclusion health and will complement the efforts of the Pan American Health Oranization's (PAHO) Commission on Equity and Health Inequalities in the Americas. Traditional survey methodology is costly and often results in studies that are highly parochial in nature. Due to difficulties recruiting and retaining marginalized groups, these studies are commonly forced to adopt methodological concessions, often selecting the most convenient participants (i.e., selection bias) or incurring increased rates of loss-to-follow-up (i.e., attrition bias). Conversely, global studies aimed at modelling the burden of disease are often not sufficiently nuanced to answer specific inferential research questions. Data-linkage has the potential to overcome these common biases and limitations. Thus, harmonised international data-linkage studies are an important component of the inclusion health response to identify the determinants of health inequalities in socially excluded groups and inform the global inclusion health agenda. This symposium will bring together facilitators from three countries with extensive experience conducting data linkage studies that generate evidence on health and social inequality in socially excluded groups. Using a current multinational study as an example, barriers to international data-linkage studies, methodological solutions, and distributed approaches to generating international comparative evidence will be presented. Innovative examples of cross-sectoral approaches to linkage with social service, correctional and national survey data will be discussed. The development of a novel framework for identifying social exclusion exposures and determinants of health inequalities typically not captured in administrative health data will also be discussed. The session will conclude with a discussion aimed at forming the foundation of an international data linkage project to address these current gaps identified in the inclusion health series and best practice for translation to policy and practice to address health disparities in socially excluded groups. References • Aldridge et al. Morbidity and mortality in homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries: a systematic review and meta-analysis. The Lancet. 2017;391(10117):241-250. https://doi.org/10.1016/S0140-6736(17)31869-X • Greenwood M et al. Challenges in health equity for Indigenous peoples in Canada. The Lancet. 2018;Epub ahead of print. https://doi.org/10.1016/S0140-6736(18)30177-

Outcomes-based Commissioning For Social Care in Extra Care Housing: Is There a Future?

Purpose: This paper provides an overview of the process of commissioning adult social care services in England. It reflects the literature on commissioning at the strategic level followed by a section on operational or micro-commissioning. The rest of the paper focuses on the emergence of ideas about outcomes based commissioning(OBC)in the field of adult social care and ends with critical consideration of the effectiveness of OBC in adult social care as applied to support and care provided in extra care housing. Design/methodology/approach: The review of strategic and operational commissioning in adult social care in England(and Scotland in brief)is based on both policy documents and a review of the literature,as are the sources addressing outcomes based commissioning in adult social care particularly in extra care housing settings. Findings: The core of this paper focuses on the challenges to the implementation of OBC in adult social care in the context of provision for residents in extra care housing. Of central importance are the impact of the squeeze on funding,increasing costs as a result of demographic change and the introduction of a national living wage plus the focus on the needs of service users through the idea of person-centred care and resistance to change on the part of adult social care staff and workers in pther relevant settings. Originality/value: Addressing the implementation of OBC in adult social care in England in the context of extra care housing

Trends in absolute socioeconomic inequalities in mortality in Sweden and New Zealand. A 20-year gender perspective

BACKGROUND: Both trends in socioeconomic inequalities in mortality, and cross-country comparisons, may give more information about the causes of health inequalities. We analysed trends in socioeconomic differentials by mortality from early 1980s to late 1990s, comparing Sweden with New Zealand. METHODS: The New Zealand Census Mortality Study (NZCMS) consisting of over 2 million individuals and the Swedish Survey of Living Conditions (ULF) comprising over 100, 000 individuals were used for analyses. Education and household income were used as measures of socioeconomic position (SEP). The slope index of inequality (SII) was calculated to estimate absolute inequalities in mortality. Analyses were based on 3–5 year follow-up and limited to individuals aged 25–77 years. Age standardised mortality rates were calculated using the European population standard. RESULTS: Absolute inequalities in mortality on average over the 1980s and 1990s for both men and women by education were similar in Sweden and New Zealand, but by income were greater in Sweden. Comparing trends in absolute inequalities over the 1980s and 1990s, men's absolute inequalities by education decreased by 66% in Sweden and by 17% in New Zealand (p for trend <0.01 in both countries). Women's absolute inequalities by education decreased by 19% in Sweden (p = 0.03) and by 8% in New Zealand (p = 0.53). Men's absolute inequalities by income decreased by 51% in Sweden (p for trend = 0.06), but increased by 16% in New Zealand (p = 0.13). Women's absolute inequalities by income increased in both countries: 12% in Sweden (p = 0.03) and 21% in New Zealand (p = 0.04). CONCLUSION: Trends in socioeconomic inequalities in mortality were clearly most favourable for men in Sweden. Trends also seemed to be more favourable for men than women in New Zealand. Assuming the trends in male inequalities in Sweden were not a statistical chance finding, it is not clear what the substantive reason(s) was for the pronounced decrease. Further gender comparisons are required