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"Health and social welfare data"
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Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review
by
Scheibner, James
,
Wakefield, Luke
,
McPhail, Steven M
in
Borders
,
Data search
,
Empirical analysis
2023
In Australia, regulations governing data, including formal legislation and policies promulgated by private and public agencies, are often seen as a barrier to data sharing. This sharing can include between institutions, as well as across jurisdictional borders in a federated jurisdiction such as Australia. In some cases, these regulations place a barrier to sharing data across borders or between institutions without a prerequisite requirement. In other cases, these regulations may be perceived as a justification not to share data. The objective of this review was to analyse published literature from Australia to see what regulations were used to justify not sharing data, along with any other factors that might discourage data sharing. We searched PubMed, Scopus and Web of Science for empirical and policy articles discussing data sharing in Australia. We then filtered these results via abstract and conducted a full text assessment to include 33 articles for analysis. Although there are a few areas of notable regulatory divergence with respect to legislation governing health data, most regulations in Australia are relatively consistent. Further, the absence of uniform ethics approval between sites in different states was frequently cited as a barrier to data sharing.
Journal Article
Public data sharing legislation, privacy and sharing of health and social welfare data in Australia: a legal and policy document analysis
2025
Australian public sector agencies want to improve access to public sector data to help conduct better informed policy analysis and research and have passed legislation to improve access to this data. Much of this public sector data also contains personal information or health information and is therefore governed by state and federal privacy law which places conditions on the use of personal and health information. This paper therefore analyses how these data sharing laws compare with one another, as well as whether they substantially change the grounds on which public sector data can be shared. It finds that data sharing legislation, by itself, does not substantially change the norms embedded in privacy and health information management law governing the sharing of personal and health information. However, this paper notes that there can still be breaches of social licence even where data sharing occurs lawfully. Further, this paper notes that there are several inconsistencies between data sharing legislation across Australia. This paper therefore proposes reform, policy, and technical strategies to resolve the impact of these inconsistencies.
Journal Article
The long-run impact of cash transfers to poor families
2016
We estimate the long-run impact of cash transfers to poor families on children's longevity, educational attainment, nutritional status, and income in adulthood. To do so, we collected individual-level administrative records of applicants to the Mothers' Pension program—the first government-sponsored welfare program in the United States (1911-1935)—and matched them to census, WWII, and death records. Male children of accepted applicants lived one year longer than those of rejected mothers. They also obtained onethird more years of schooling, were less likely to be underweight, and had higher income in adulthood than children of rejected mothers.
Journal Article
The effects of integrated care: a systematic review of UK and international evidence
2018
Background
Healthcare systems around the world have been responding to the demand for better integrated models of service delivery. However, there is a need for further clarity regarding the effects of these new models of integration, and exploration regarding whether models introduced in other care systems may achieve similar outcomes in a UK national health service context.
Methods
The study aimed to carry out a systematic review of the effects of integration or co-ordination between healthcare services, or between health and social care on service delivery outcomes including effectiveness, efficiency and quality of care. Electronic databases including MEDLINE; Embase; PsycINFO; CINAHL; Science and Social Science Citation Indices; and the Cochrane Library were searched for relevant literature published between 2006 to March 2017. Online sources were searched for UK grey literature, and citation searching, and manual reference list screening were also carried out. Quantitative primary studies and systematic reviews, reporting actual or perceived effects on service delivery following the introduction of models of integration or co-ordination, in healthcare or health and social care settings in developed countries were eligible for inclusion. Strength of evidence for each outcome reported was analysed and synthesised using a four point comparative rating system of stronger, weaker, inconsistent or limited evidence.
Results
One hundred sixty seven studies were eligible for inclusion. Analysis indicated evidence of perceived improved quality of care, evidence of increased patient satisfaction, and evidence of improved access to care. Evidence was rated as either inconsistent or limited regarding all other outcomes reported, including system-wide impacts on primary care, secondary care, and health care costs. There were limited differences between outcomes reported by UK and international studies, and overall the literature had a limited consideration of effects on service users.
Conclusions
Models of integrated care may enhance patient satisfaction, increase perceived quality of care, and enable access to services, although the evidence for other outcomes including service costs remains unclear. Indications of improved access may have important implications for services struggling to cope with increasing demand.
Trial registration
Prospero registration number:
42016037725
.
Journal Article
When Did the Health Gradient Emerge? Social Class and Adult Mortality in Southern Sweden, 1813–2015
2020
Across today’s developed world, there is a clear mortality gradient by socioeconomic status for all ages. It is often taken for granted that this gradient was as strong—or even stronger—in the past when social transfers were rudimentary and health care systems were less developed. Some studies based on cross-sectional data have supported this view, but others based on longitudinal data found that this was not the case. If there was no gradient in the past, when did it emerge? To answer this question, we examine social class differences in adult mortality for men and women in southern Sweden over a 200-year period, using unique individual-level register data. We find a systematic class gradient in adult mortality emerging at ages 30–59 only after 1950 for women and after 1970 for men, and in subsequent periods also observable for ages 60–89. Given that the mortality gradient emerged when Sweden transitioned into a modern welfare state with substantial social transfers and a universal health care system, this finding points to lifestyle and psychosocial factors as likely determinants.
Journal Article
Healthcare Access and Quality Index based on mortality from causes amenable to personal health care in 195 countries and territories, 1990–2015: a novel analysis from the Global Burden of Disease Study 2015
2017
National levels of personal health-care access and quality can be approximated by measuring mortality rates from causes that should not be fatal in the presence of effective medical care (ie, amenable mortality). Previous analyses of mortality amenable to health care only focused on high-income countries and faced several methodological challenges. In the present analysis, we use the highly standardised cause of death and risk factor estimates generated through the Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) to improve and expand the quantification of personal health-care access and quality for 195 countries and territories from 1990 to 2015.
We mapped the most widely used list of causes amenable to personal health care developed by Nolte and McKee to 32 GBD causes. We accounted for variations in cause of death certification and misclassifications through the extensive data standardisation processes and redistribution algorithms developed for GBD. To isolate the effects of personal health-care access and quality, we risk-standardised cause-specific mortality rates for each geography-year by removing the joint effects of local environmental and behavioural risks, and adding back the global levels of risk exposure as estimated for GBD 2015. We employed principal component analysis to create a single, interpretable summary measure–the Healthcare Quality and Access (HAQ) Index–on a scale of 0 to 100. The HAQ Index showed strong convergence validity as compared with other health-system indicators, including health expenditure per capita (r=0·88), an index of 11 universal health coverage interventions (r=0·83), and human resources for health per 1000 (r=0·77). We used free disposal hull analysis with bootstrapping to produce a frontier based on the relationship between the HAQ Index and the Socio-demographic Index (SDI), a measure of overall development consisting of income per capita, average years of education, and total fertility rates. This frontier allowed us to better quantify the maximum levels of personal health-care access and quality achieved across the development spectrum, and pinpoint geographies where gaps between observed and potential levels have narrowed or widened over time.
Between 1990 and 2015, nearly all countries and territories saw their HAQ Index values improve; nonetheless, the difference between the highest and lowest observed HAQ Index was larger in 2015 than in 1990, ranging from 28·6 to 94·6. Of 195 geographies, 167 had statistically significant increases in HAQ Index levels since 1990, with South Korea, Turkey, Peru, China, and the Maldives recording among the largest gains by 2015. Performance on the HAQ Index and individual causes showed distinct patterns by region and level of development, yet substantial heterogeneities emerged for several causes, including cancers in highest-SDI countries; chronic kidney disease, diabetes, diarrhoeal diseases, and lower respiratory infections among middle-SDI countries; and measles and tetanus among lowest-SDI countries. While the global HAQ Index average rose from 40·7 (95% uncertainty interval, 39·0–42·8) in 1990 to 53·7 (52·2–55·4) in 2015, far less progress occurred in narrowing the gap between observed HAQ Index values and maximum levels achieved; at the global level, the difference between the observed and frontier HAQ Index only decreased from 21·2 in 1990 to 20·1 in 2015. If every country and territory had achieved the highest observed HAQ Index by their corresponding level of SDI, the global average would have been 73·8 in 2015. Several countries, particularly in eastern and western sub-Saharan Africa, reached HAQ Index values similar to or beyond their development levels, whereas others, namely in southern sub-Saharan Africa, the Middle East, and south Asia, lagged behind what geographies of similar development attained between 1990 and 2015.
This novel extension of the GBD Study shows the untapped potential for personal health-care access and quality improvement across the development spectrum. Amid substantive advances in personal health care at the national level, heterogeneous patterns for individual causes in given countries or territories suggest that few places have consistently achieved optimal health-care access and quality across health-system functions and therapeutic areas. This is especially evident in middle-SDI countries, many of which have recently undergone or are currently experiencing epidemiological transitions. The HAQ Index, if paired with other measures of health-system characteristics such as intervention coverage, could provide a robust avenue for tracking progress on universal health coverage and identifying local priorities for strengthening personal health-care quality and access throughout the world.
Bill & Melinda Gates Foundation.
Journal Article
The Impact of Medicaid on Labor Market Activity and Program Participation: Evidence from the Oregon Health Insurance Experiment
2014
In 2008, a group of uninsured low-income adults in Oregon was selected by lottery for the chance to apply for Medicaid. Using this randomized design and 2009 administrative data, we find no significant effect of Medicaid on employment or earnings. Our 95 percent confidence intervals allow us to reject that Medicaid causes a decline in employment of more than 4.4 percentage points, or an increase of more than 1.2 percentage points. Medicaid increases food stamps receipt, but has little, if any, impact on receipt of other measured government benefits, including SSDI.
Journal Article
Quantitative methods for health research
2018,2017
A practical introduction to epidemiology, biostatistics, and research methodology for the whole health care community
This comprehensive text, which has been extensively revised with new material and additional topics, utilizes a practical slant to introduce health professionals and students to epidemiology, biostatistics, and research methodology. It draws examples from a wide range of topics, covering all of the main contemporary health research methods, including survival analysis, Cox regression, and systematic reviews and meta-analysis—the explanation of which go beyond introductory concepts. This second edition of Quantitative Methods for Health Research: A Practical Interactive Guide to Epidemiology and Statistics also helps develop critical skills that will prepare students to move on to more advanced and specialized methods.
A clear distinction is made between knowledge and concepts that all students should ensure they understand, and those that can be pursued further by those who wish to do so. Self-assessment exercises throughout the text help students explore and reflect on their understanding. A program of practical exercises in SPSS (using a prepared data set) helps to consolidate the theory and develop skills and confidence in data handling, analysis, and interpretation. Highlights of the book include:
* Combining epidemiology and bio-statistics to demonstrate the relevance and strength of statistical methods
* Emphasis on the interpretation of statistics using examples from a variety of public health and health care situations to stress relevance and application
* Use of concepts related to examples of published research to show the application of methods and balance between ideals and the realities of research in practice
* Integration of practical data analysis exercises to develop skills and confidence
* Supplementation by a student companion website which provides guidance on data handling in SPSS and study data sets as referred to in the text
Quantitative Methods for Health Research, Second Edition is a practical learning resource for students, practitioners and researchers in public health, health care and related disciplines, providing both a course book and a useful introductory reference.
Global burden of 87 risk factors in 204 countries and territories, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019
by
Iso, Hiroyasu
,
Hall, Brian J
,
Herteliu, Claudiu
in
Air pollution
,
Bayesian analysis
,
Blood pressure
2020
Rigorous analysis of levels and trends in exposure to leading risk factors and quantification of their effect on human health are important to identify where public health is making progress and in which cases current efforts are inadequate. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2019 provides a standardised and comprehensive assessment of the magnitude of risk factor exposure, relative risk, and attributable burden of disease.
GBD 2019 estimated attributable mortality, years of life lost (YLLs), years of life lived with disability (YLDs), and disability-adjusted life-years (DALYs) for 87 risk factors and combinations of risk factors, at the global level, regionally, and for 204 countries and territories. GBD uses a hierarchical list of risk factors so that specific risk factors (eg, sodium intake), and related aggregates (eg, diet quality), are both evaluated. This method has six analytical steps. (1) We included 560 risk–outcome pairs that met criteria for convincing or probable evidence on the basis of research studies. 12 risk–outcome pairs included in GBD 2017 no longer met inclusion criteria and 47 risk–outcome pairs for risks already included in GBD 2017 were added based on new evidence. (2) Relative risks were estimated as a function of exposure based on published systematic reviews, 81 systematic reviews done for GBD 2019, and meta-regression. (3) Levels of exposure in each age-sex-location-year included in the study were estimated based on all available data sources using spatiotemporal Gaussian process regression, DisMod-MR 2.1, a Bayesian meta-regression method, or alternative methods. (4) We determined, from published trials or cohort studies, the level of exposure associated with minimum risk, called the theoretical minimum risk exposure level. (5) Attributable deaths, YLLs, YLDs, and DALYs were computed by multiplying population attributable fractions (PAFs) by the relevant outcome quantity for each age-sex-location-year. (6) PAFs and attributable burden for combinations of risk factors were estimated taking into account mediation of different risk factors through other risk factors. Across all six analytical steps, 30 652 distinct data sources were used in the analysis. Uncertainty in each step of the analysis was propagated into the final estimates of attributable burden. Exposure levels for dichotomous, polytomous, and continuous risk factors were summarised with use of the summary exposure value to facilitate comparisons over time, across location, and across risks. Because the entire time series from 1990 to 2019 has been re-estimated with use of consistent data and methods, these results supersede previously published GBD estimates of attributable burden.
The largest declines in risk exposure from 2010 to 2019 were among a set of risks that are strongly linked to social and economic development, including household air pollution; unsafe water, sanitation, and handwashing; and child growth failure. Global declines also occurred for tobacco smoking and lead exposure. The largest increases in risk exposure were for ambient particulate matter pollution, drug use, high fasting plasma glucose, and high body-mass index. In 2019, the leading Level 2 risk factor globally for attributable deaths was high systolic blood pressure, which accounted for 10·8 million (95% uncertainty interval [UI] 9·51–12·1) deaths (19·2% [16·9–21·3] of all deaths in 2019), followed by tobacco (smoked, second-hand, and chewing), which accounted for 8·71 million (8·12–9·31) deaths (15·4% [14·6–16·2] of all deaths in 2019). The leading Level 2 risk factor for attributable DALYs globally in 2019 was child and maternal malnutrition, which largely affects health in the youngest age groups and accounted for 295 million (253–350) DALYs (11·6% [10·3–13·1] of all global DALYs that year). The risk factor burden varied considerably in 2019 between age groups and locations. Among children aged 0–9 years, the three leading detailed risk factors for attributable DALYs were all related to malnutrition. Iron deficiency was the leading risk factor for those aged 10–24 years, alcohol use for those aged 25–49 years, and high systolic blood pressure for those aged 50–74 years and 75 years and older.
Overall, the record for reducing exposure to harmful risks over the past three decades is poor. Success with reducing smoking and lead exposure through regulatory policy might point the way for a stronger role for public policy on other risks in addition to continued efforts to provide information on risk factor harm to the general public.
Bill & Melinda Gates Foundation.
Journal Article
Early Impacts of the Affordable Care Act on Health Insurance Coverage in Medicaid Expansion and Non-Expansion States
2017
The Affordable Care Act (ACA) aimed to achieve nearly universal health insurance coverage in the United States through a combination of insurance market reforms, mandates, subsidies, health insurance exchanges, and Medicaid expansions, most of which took effect in 2014. This paper estimates the causal effects of the ACA on health insurance coverage in 2014 using data from the American Community Survey. We utilize difference-in-difference-in-differences models that exploit cross-sectional variation in the intensity of treatment arising from state participation in the Medicaid expansion and local area pre-ACA uninsured rates. This strategy allows us to identify the effects of the ACA in both Medicaid expansion and non-expansion states. Our preferred specification suggests that, at the average pre-treatment uninsured rate, the full ACA increased the proportion of residents with insurance by 5.9 percentage points compared to 2.8 percentage points in states that did not expand Medicaid. Private insurance expansions from the ACA were due to increases in both employer-provided and non-group coverage. The coverage gains from the full ACA were largest for those without a college degree, non-whites, young adults, unmarried individuals, and those without children in the home. We find no evidence that the Medicaid expansion crowded out private coverage.
Journal Article