Daniel D. Reidpath

Data Sharing in Medical Research: An Empirical Investigation

BACKGROUND Scientific research entails systematic investigation. Publishing the findings of research in peer reviewed journals implies a high level of confidence by the authors in the veracity of their interpretation. Therefore it stands to reason that researchers should be prepared to share their raw data with other researchers, so that others may enjoy the same level of confidence in the findings. METHOD In a prospective study, 29 corresponding authors of original research articles in a medical journal (the British Medical Journal) were contacted to ascertain their preparedness to share the data from their research. The email contact was in one of two forms, a general request and a specific request. The type of request a researcher received was randomly allocated. FINDINGS Researchers receiving specific requests for data were less likely, and slower, to respond than researchers receiving general requests. Only one researcher released data. Most researchers were reluctant to release their data. Some required further information, clarification, or authorship. INTERPRETATION The general reluctance of researchers to consider requests for their data is of concern. It raises questions about the level of confidence that should be placed on their interpretations of the data. It also highlights an unfortunate situation where researchers are more concerned with losing an advantage than advancing science.

A method for the quantitative analysis of the layering of HIV-related stigma

HIV-related stigma is regarded as one of the major barriers in the development of effective prevention and care programs; but the stigma associated with HIV stigma is not a singular entity. The stigma of the infection is layered with other stigmas, such as those associated with the routes of transmission (e.g., sex work and injecting drug use) and personal characteristics (e.g., race, religion, ethnicity and gender). In developing programs and policies to overcome HIV-related stigma, cognisance needs to be taken of all the sources of stigma, and how they may interact. A novel method is described for examining the layers of HIV/AIDS-related stigma, and secondary data are adapted to illustrate this. The importance of understanding the layering of stigma for the development of effective interventions is also discussed.

Vulnerability, equity and universal coverage – a concept note

Universal coverage embodies a critical underlying social value; the recognition that those goods and services that support health, however we define it, have to be available and accessible to all. The choice of which of these goods and services are considered essential, the mechanisms by which they would be financed and so on are almost secondary to this basic consensus, that coverage has to be universal, leaving no one out. Inextricably linked to this understanding of universal coverage is therefore an imperative to ensure equity. Within the context of health and health systems, pursuing equity requires the identification and addressing of those determinants that systematically restrict or prevent access to particular groups. Pursing equity also requires the institution of processes that enable population groups to help to identify the systems that perpetuate inequities as well as possible solutions to reduce or eliminate disparities. The notion of vulnerability, although extensively used (and sometimes abused) in the public health and social sciences literature [1,2], provides a useful framework for identifying various population groups and systems against which achievement of universal coverage can be benchmarked. In this background paper, we attempt to bring to the fore, some of the issues that create vulnerability and that define the populations critical to universal coverage. We argue that contemporary discussions on universal coverage are often overwhelmed by considerations of financing to the detriment of the central tenet of what universal coverage tries to achieve: health for all.

Institutional and structural forms of HIV-related discrimination in health care : a study set in Beijing

Abstract This paper presents key findings of a situational analysis of institutional and structural levels of HIV/AIDS-related discrimination in Beijing, China, with a focus on the area of health care. Initially slow to respond to the presence of HIV, China has altered its approach and enacted strict legislative protection for people living with HIV/AIDS (PLWHA). In order to determine whether this has altered discrimination against PLWHA, this study examined existing legislation and policy, and interviewed key informants working in health care and PLWHA. The overall findings revealed that discrimination in its many forms continued to occur in practice despite Chinas generally strong legislative protection, and it is the actual practice that is hindering PLWHAs’ access to health services. A number of legislative and policy gaps that allow discrimination to occur in practice were also identified and discussed. The paper concludes with a call to rectify specific gaps between legislation, policy and practice. An understanding of the underlying factors that drive discrimination will also be necessary for effective strategic interventions to be developed and implemented.

Rethinking health-care systems: a focus on chronicity

450 www.thelancet.com Vol 377 February 5, 2011 Health-care systems, including those in countries of the Organisation for Economic Co-operation and Development, face a crisis of an increasing burden of chronic disease aggravated by ageing populations and complicated by the continuing risks of infectious diseases and global pandemics. The issues for health-care systems in low-income and middle-income countries are compounded by persistent diseases of poverty, and the inadequately understood comorbidities of both infectious and noncommunicable diseases. The structure of health-care systems refl ects an underlying understanding of health and disease in which acute episodes result in help-seeking, with the expected outcome of a cure or death. In this model, chronic conditions are treated as serial acute episodes with multiple interactions with the health-care system. As the capacity to manage acute phases of chronic conditions improves, disease prevalence rises, resulting in a fi nancial burden that will begin to dwarf costs in other parts of the health system. For example, Uganda, supported by international aid, has achieved 16% coverage of its HIV-positive population with highly active antiretroviral therapy (HAART), moving the treated few from the category of acute to chronic. The expectation follows of a lifelong commitment to the already treated few, with an implicit promise to manage the remaining 84% as funds become available. Without ongoing global health funding, and in view of the cost of HAART and the cost to the health system of lifelong treatment, it is hard to imagine that this situation will be sustainable. Similarly, the cost of diabetes care per patient in Cameroon was US

Social Medication and the control of children: A qualitative study of over-the-counter medication among Australian children

489 per year in 2002. This cost exceeds the annual per head income by 1·5 times, and exceeds the per-head governmental health spending by around 50 times. Cameroon is not alone with emerging evidence of a diabetes epidemic across many of the poorest countries in sub-Saharan Africa. In essence, as the technology to lengthen the lives of those with chronic conditions is developed, the fi xed costs of the health system increase. The fi nancial burden will necessitate socially and politically uncomfortable trade-off s. The current focus on health systems is therefore timely. However, discussions to date largely centre on delivering the familiar model of acute-centric care, albeit with some concentration on tackling the weaknesses in the six key components of health systems: service delivery, fi nance, governance, technologies, workforce, and information. Other issues under discussion include the need for universal coverage and equity. These issues are placed within the broader context of systems needed to deliver vertical disease-focused programmes for infectious and noncommunicable diseases. Although this approach might be appropriate for acute conditions, and arguably for higher-income countries, it is unaff ordable and unsustainable with the increasing burden of chronic disease in lowerincome and middle-income countries. And although reducing the burden of chronic diseases in younger and middle-aged people might succeed, the increasing burden of chronic conditions is an inescapable reality of ageing populations. The challenge for health-care systems is to explore and address the implications of chronicity which capture the complexity of addressing disease conditions—regardless of cause—characterised by long duration and often slow progression. Chronicity has wide-ranging implications for, among other things: health promotion and preventive strategies that address risk factors; fi nancing and planning of health-care systems; training of the health workforce; and the nature and location of health infrastructure. Chronicity provides a framework for exploring an Co bi s Published Online November 11, 2010 DOI:10.1016/S01406736(10)61856-9

Universal coverage in an era of privatisation: can we guarantee health for all?

Objective. The aim of the study was to identify the patterns of use of over-the-counter (OTC) medications among children. Methods. The study used a qualitative design, with in-depth interviews of 40 parents with children <5 years of age. Results. There were 3 striking and readily apparent themes in the use of OTC medications among children. One was the administration of OTC medications as a form of “social medication,” to give parents control over childrens behavior that they perceived as fractious and irritating. A related theme was the use of OTC medications to reduce the inconvenience to the parents of having a sick child, again giving parents greater control and better time-management abilities. Finally, acetaminophen was considered by many parents to have almost miraculous properties in calming, sedating, and lifting the mood of children. Conclusions. The use of OTC medications for the treatment of minor ailments among children is widespread, despite the lack of evidence of efficacy of the most commonly used medications and the potential for toxicity. With the increasing propensity to look to medication as a means of supporting changing lifestyles, there is an urgent need to review the prevalence and effects of social medication.

Establishing the causes of childhood mortality in Ghana: the ‘spirit child’

A government that claims to provide universal health coverage (UHC) needs to establish that access to health services is available for the whole population for the full spectrum of services without risk of undue financial hardship. Embedded within the idea of UHC are two distinct notions. First, access to the full spectrum of health services needs to include access to preventive care through to palliative care and rehabilitative services. Second, access to services for a whole population means that everyone should be able to enjoy the benefits of the health system, regardless of individual economic, social, or geographic position. Those in favour of UHC see health as a public good not simply an individual benefit, and they recognise that, as a consequence of this view, the implementation of UHC requires a level of regulation and a kind of investment that is inconsistent with an unconstrained free market. The challenge for government is in selecting the mix of regulatory and financing mechanisms for the chosen, universally available, health services. This also presupposes that the parcel of health services that will be available has been identified, and there are systems in place to monitor and evaluate the system. It was around these issues that the International Symposium on Universal Health Coverage in Malaysia, convened by Global Public Health at the School of Medicine and Health Sciences, Monash University Sunway Campus on 3 – 4 October 2011 cohered. The symposium provided an opportunity for lively and robust discussions between the private health care sector, including private health care and insurance providers, government and academics. The proceedings of the symposium are expected to feed into the background papers for the Second Global Symposium on Health Systems Research to be held in Beijing, 31 October to 3 November 2012 and copies of presentations are accessible [1]. The gathering also presented the opportunity for the Monash 2011 Global Health Oration on the topic, presented by Professor Timothy Evans [2]. This supplement presents a compilation of select papers from the symposium which attempt to examine the concept of UHC from a series of different perspectives. 1. Equity and vulnerability; 2. Insurance and financing; 3. Coverage and satisfaction; and 4. Implementation. These perspectives necessarily overlap and the insights from one perspective help to inform the considerations from another perspective.

An Asia Pacific six-country study on HIV-related discrimination: Introduction

Communities in remote regions of northeast Ghana record some of the highest rates of under five mortality in West Africa (23.9 per 1000 children/year (Binka, Maude et al. (1995). International Journal of Epidemiology, 24(1), 127-135). The communities, isolated geographically and culturally from the main tribal groups in Ghana continue to adhere very strongly to traditional beliefs and practices. A qualitative study of both traditional and modern maternal and child health care systems in the area, demonstrated that almost 15% of deaths of infants under 3 months of age were due to a belief in chichuru or spirit children, resulting in infanticide. It is therefore a significant public health problem, which has to be addressed in programs for the control of child mortality. A modification of the verbal autopsy method is proposed to assist in the identification of non-biomedical causes of death.

China's rural-urban care gap shrank for chronic disease patients, but inequities persist.

Abstract This paper outlines a six-country study of institutionalised forms of HIV/AIDS-related discrimination in the Asia-Pacific region. Although recognised as a barrier to disease prevention and treatment, very limited data are available on the effects of institutionalised HIV-related stigma and discrimination. Understanding the forms of discrimination within the institutions where they occur is the first step to identifying effective ways of promoting compassionate, non-discriminatory treatment of PLWHA. Thus, the goal of this research project was to document institutional discrimination against PLWHA, as guided by the UNAIDS Protocol for the Identification of Discrimination Against People Living with HIV (2000), in six Asian countries: India, Thailand, Philippines, China, Vietnam and Indonesia. As a precursor to the six individual studies, this paper provides a brief overview of the literature on HIV discrimination, and then describes the UNAIDS Protocol and the shared methodological considerations relevant to all of the study sites. Commonalities in sampling, procedures and analysis are also discussed.