A Win:Win for Data Access: Balancing Public Good with Privacy Concerns

This chapter suggests that the current urgent issues facing modern societies demand the best information and knowledge from which decisions can be made. This is vital for governments at all levels, nongovernment organisations and researchers whose work is used by those making decisions and policy. Such information is commonly available but rarely used, linked, re-used and analysed intelligently to inform such decision-making. As many problems are global, finding, sharing and analysing such data in robust national and international collaborations are essential activities. Such problems include environmental degradation, climate change, global pandemics, increases in obesity and mental ill health, overpopulation and city planning, water, security, crime and youth unrest. A recent report entitled From Data to Wisdom, prepared for the Prime Minister’s Science, Engineering and Innovation Council (PMSEIC) made several recommendations to put Australia in a strong position to both monitor and analyse these pressing problems internally and to be at the international table, when appropriate, to participate in planning and evaluating global threats.2 One major issue in population data linkage is the balance between using individual health records on the total population for important public good activities, while at the same time ensuring that such private information is kept confidential. The rationale for using such data includes obtaining accurate and unbiased assessments of risks of disease and the effects of medical care. A win:win process to allow access and to protect privacy that has been developed and used in Western Australia for over 30 years is described below

Population data, ethics and paediatric care: how we can use population data to guide ethical decision making

1. Population data and record linkage in WA A) Development/ methods/ advantages B) Examples for child health services 2. The special case of pharmacovigilance 3. Ethical issues 4. Modernity’s paradox and the imperative for good dataIndiana University Center for Bioethics; Riley Hospital for Childre

Data for a civil society: how we can harmonise privacy and use population data for public good

1. Modernity’s paradox - an uncivil society 2. Population data and record linkage 3. Understanding bias 4. Harmonising individual privacy and public goodIndiana University Center for Bioethic

\u27There are a lot of new people in town: but they are here for soccer, not for business\u27 a qualitative inquiry into the impact of the 2010 soccer world cup on sex work in South Africa

Background: Sports mega-events have expanded in size, popularity and cost. Fuelled by media speculation and moral panics, myths proliferate about the increase in trafficking into forced prostitution as well as sex work in the run-up to such events. This qualitative enquiry explores the perceptions of male, female and transgender sex workers of the 2010 Soccer World Cup held in South Africa, and the impact it had on their work and private lives. Methods: A multi-method study design was employed. Data consisted of 14 Focus Group Discussions, 53 sex worker diaries, and responses to two questions in surveys with 1059 male, female and transgender sex workers in three cities. Results: Overall, a minority of participants noted changes to the sex sector due to the World Cup and nothing emerged on the feared increases in trafficking into forced prostitution. Participants who observed changes in their work mainly described differences, both positive and negative, in working conditions, income and client relations, as well as police harassment. The accounts of changes were heterogeneous - often conflicting in the same research site and across sites. Conclusions: No major shifts occurred in sex work during the World Cup, and only a few inconsequential changes were noted. Sports mega-events provide strategic opportunities to expand health and human rights programmes to sex workers. The 2010 World Cup missed that opportunity

Are women with major depression in pregnancy identifiable in population health data?

BACKGROUND: Although record linkage of routinely collected health datasets is a valuable research resource, most datasets are established for administrative purposes and not for health outcomes research. In order for meaningful results to be extrapolated to specific populations, the limitations of the data and linkage methodology need to be investigated and clarified. It is the objective of this study to investigate the differences in ascertainment which may arise between a hospital admission dataset and a dispensing claims dataset, using major depression in pregnancy as an example. The safe use of antidepressants in pregnancy is an ongoing issue for clinicians with around 10% of pregnant women suffer from depression. As the birth admission will be the first admission to hospital during their pregnancy for most women, their use of antidepressants, or their depressive condition, may not be revealed to the attending hospital clinicians. This may result in adverse outcomes for the mother and infant. METHODS: Population-based de-identified data were provided from the Western Australian Data Linkage System linking the administrative health records of women with a delivery to related records from the Midwives’ Notification System, the Hospital Morbidity Data System and the national Pharmaceutical Benefits Scheme dataset. The women with depression during their pregnancy were ascertained in two ways: women with dispensing records relating to dispensed antidepressant medicines with an WHO ATC code to the 3rd level, pharmacological subgroup, ‘N06A Antidepressants’; and, women with any hospital admission during pregnancy, including the birth admission, if a comorbidity was recorded relating to depression. RESULTS: From 2002 to 2005, there were 96698 births in WA. At least one antidepressant was dispensed to 4485 (4.6%) pregnant women. There were 3010 (3.1%) women with a comorbidity related to depression recorded on their delivery admission, or other admission to hospital during pregnancy. There were a total of 7495 pregnancies identified by either set of records. Using data linkage, we determined that these records represented 6596 individual pregnancies. Only 899 pregnancies were found in both groups (13.6% of all cases). 80% of women dispensed an antidepressant did not have depression recorded as a comorbidity on their hospital records. A simple capture-recapture calculation suggests the prevalence of depression in this population of pregnant women to be around 16%. CONCLUSION: No single data source is likely to provide a complete health profile for an individual. For women with depression in pregnancy and dispensed antidepressants, the hospital admission data do not adequately capture all cases

Assisted Vaginal Deliveries in Mothers Admitted as Public or Private Patients in Western Australia

Background: Mothers delivering as private patients in Australia have a high rate of assisted deliveries, which could lead to adverse infant outcomes in this group of patients. We investigated whether the risk of adverse infant outcomes after assisted deliveries was different for mothers admitted as public or private patients for delivery, when compared with unassisted deliveries. Methods and findings: We included 158,241 vaginal, singleton, term birth admissions in our study where the infant was live born and without birth defects. The study population was identified from statutory birth and hospital data collections held by the Western Australian (WA) Department of Health. We estimated odds ratios and confidence intervals using logistic regression models adjusted for a range of maternal demographic, pregnancy and birth characteristics. Interaction was assessed by including interaction terms in the models. Outcomes included low Apgar scores at five minutes (,7), neonatal resuscitation and special care admission. Mothers delivering as private patients had an increased risk of assisted vaginal delivery compared with public patients (adjusted OR 1.74, 95% CI = 1.68–1.80). Compared with unassisted vaginal deliveries, assisted deliveries were associated with increased risk of Apgar scores at five minutes below 7 (OR 1.25, 1.08–1.45), neonatal resuscitation (OR = 1.69, 1.42–2.00) and admission to special care nursery (OR = 1.64, 1.53–1.76). The increased risk of neonatal resuscitation was higher for mothers admitted as private patients for delivery (OR = 2.13) than public patients (OR = 1.55, pinteraction = 0.03). Conclusions: Our results suggested that the high risk of neonatal resuscitation following assisted vaginal deliveries compared to unassisted is higher in private patients than public patients. Whether this phenomenon is due to the twofold higher rate of assisted vaginal deliveries in this group of patients or a higher rate of fetal indications for assisted vaginal delivery remains to be answered

The Australian Baby Bonus Maternity Payment and Birth Characteristics in Western Australia

Background: The Australian baby bonus maternity payment introduced in 2004 has been reported to have successfully increased fertility rates in Australia. We aimed to investigate the influence of the baby bonus on maternal demographics and birth characteristics in Western Australia (WA). Methods and Findings: This study included 200,659 birth admissions from WA during 2001–2008, identified from administrative birth and hospital data-systems held by the WA Department of Health. We estimated average quarterly birth rates after the baby bonus introduction and compared them with expected rates had the policy not occurred. Rate and percentage differences (including 95% confidence intervals) were estimated separately by maternal demographics and birth characteristics. WA birth rates increased by 12.8% following the baby bonus implementation with the greatest increase being in mothers aged 20–24 years (26.3%, 95%CI = 22.0,30.6), mothers having their third (1.6%, 95%CI = 0.9,2.4) or fourth child (2.2%, 95%CI = 2.1,2.4), mothers living in outer regional and remote areas (32.4%, 95%CI = 30.2,34.6), mothers giving birth as public patients (1.5%, 95%CI = 1.3,1.8), and mothers giving birth in public hospitals (3.5%, 95%CI = 2.6,4.5). Interestingly, births to private patients (24.3%, 95%CI =24.8,23.7) and births in private hospitals (26.3%, 95%CI =26.8,25.8) decreased following the policy implementation. Conclusions: The introduction of the baby bonus maternity payment may have served as an incentive for women in their early twenties and mothers having their third or fourth child and may have contributed to the ongoing pressure and staff shortages in Australian public hospitals, particularly those in outer regional and remote areas

At the Heart of the Problem: Health in Johannesburg\u27s Inner-City

Urban life in the twenty-first century is marked by numerous stresses and shocks, resulting from rapid urbanisation, frequent migration and crowding, massive unemployment, climate change, physical disasters, and disease outbreaks, among other challenges. This reality – according to the ‘100 Resilient Cities’ initiative of the Rockefeller Foundation – is why the concept of resilience is critical to a sustainable future: cities must learn to “survive and thrive, regardless of the challenge” [1]. In cities in the global South that face a heavy HIV burden, this health crisis is often inseparable from a wider set of interlinked social challenges, ranging from acute economic inequality to chronic political mismanagement and failed states. What ‘resilience’ means in such contexts is hard to imagine, but at the very least, as UNAIDS’ Michel Sidibé puts it, “people must be at the centre of the response” [2]

Understanding the “gut instinct” of expert coaches during talent identification

Coaches are an integral part of talent identification in sport and are often used as the “gold standard” against which scientific methods of talent identification are compared. However, their decision-making during this process is not well understood. In this article, we use an ecological approach to explore talent identification in combat sports. We interviewed twenty-four expert, international-level coaches from the Olympic disciplines of boxing, judo, and taekwondo (age: 48.7 + 7.5 years; experience: 20.8 + 8.3 years). Findings indicated that when coaches identify talent they rely on “gut instinct”: intuitive judgements made without conscious thought, used to direct attention to particular athletes or characteristics. Our analysis revealed four major contributors to coaches’ intuition: experiential knowledge, temporal factors, seeing athletes in context, and what can be worked with. Our findings demonstrate that i) athlete selections may be influenced by the coaches’ perceived ability to improve certain athletes (rather than solely on athlete ability); and ii) “instinctual” decisions are the result of years of experience, time spent with the athlete, and the context surrounding the decision. Based on these findings, we recommend that future research focuses on the duration and conditions that are required for coaches to confidently and reliably identify talented athletes