Pascale Allotey

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.

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.

Addressing non-communicable diseases in Malaysia: an integrative process of systems and community

The prevalence of non-communicable diseases (NCDs) and NCD risk factors in Malaysia have risen substantially in the last two decades. The Malaysian Ministry of Health responded by implementing, “The National Strategic Plan for Non-Communicable Diseases (NSP-NCD) 2010-2014”, and the “NCD Prevention 1Malaysia” (NCDP-1M) programme. This paper outlines the primary health system context in which the NCDP-1M is framed. We also discuss the role of community in facilitating the integration of this programme, and outline some of the key challenges in addressing the sustainability of the plan over the next few years. The paper thus provides an analysis of an integration of a programme that involved a multi-sectoral approach with the view to contributing to a broader discourse on the development of responsive health systems.

Social Research on Neglected Diseases of Poverty: Continuing and Emerging Themes

Neglected tropical diseases (NTDs) exist and persist for social and economic reasons that enable the vectors and pathogens to take advantage of changes in the behavioral and physical environment. Persistent poverty at household, community, and national levels, and inequalities within and between sectors, contribute to the perpetuation and re-emergence of NTDs. Changes in production and habitat affect the physical environment, so that agricultural development, mining and forestry, rapid industrialization, and urbanization all result in changes in human uses of the environment, exposure to vectors, and vulnerability to infection. Concurrently, political instability and lack of resources limit the capacity of governments to manage environments, control disease transmission, and ensure an effective health system. Social, cultural, economic, and political factors interact and influence government capacity and individual willingness to reduce the risks of infection and transmission, and to recognize and treat disease. Understanding the dynamic interaction of diverse factors in varying contexts is a complex task, yet critical for successful health promotion, disease prevention, and disease control. Many of the research techniques and tools needed for this purpose are available in the applied social sciences. In this article we use this term broadly, and so include behavioral, population and economic social sciences, social and cultural epidemiology, and the multiple disciplines of public health, health services, and health policy and planning. These latter fields, informed by foundational social science theory and methods, include health promotion, health communication, and heath education. Social science health researchers have attended particularly to HIV/AIDS, and more recently to malaria and tuberculosis (TB), reflecting the prevalence and resistance to control of these diseases and their emphasis in the United Nations Millenium Development Goals. Other infectious diseases, by default, have slipped into a “neglected” category. These include most “tropical” diseases, such as Chagas disease, dengue, human African trypanosomiasis, leishmaniasis, leprosy, lymphatic filariasis, schistosomiasis, and onchocerciasis. The inclusion of these diverse diseases as “neglected” refers not only to their status relative to HIV, TB, and malaria. Their neglect reflects their epidemiology: they are prevalent among the poorest and most marginalized of the worlds population. More than 70% of countries and territories affected by NTDs are low-income and lower middle-income countries, and 100% of low-income countries are affected by at least five NTDs [1]. This is due to multiple factors, including the focality of most NTDs and hence the localization of vulnerability, morbidity, and mortality. Various social determinants (e.g., poverty, gender, education, and migration) interact to establish local patterns of co-morbidity of NTDs and other pertinent public health problems (e.g., malnutrition, malaria, diarrheal diseases, and violence). These vulnerable populations tend to lack the power to draw attention from decision makers to their problems and to attract resources, and national resources tend to be directed to high prevalence, epidemic conditions at the expense of endemic diseases. NTDs also attract little research nationally or internationally, and virtually no investment or commercially based research and development in wealthy research settings [2]. In recent years, however, NTDs have received increasing international interest, partly in response to promising advances in drug development. Concerted efforts are being made also to promote innovative public health approaches such as integrated delivery of multiple interventions [3]–[5], which require research effort into effective public health interventions. This article was stimulated by the renewed interest in populations affected by NTDs and in feasible ways to prevent and control NTDs. Rather than focusing on specific medically defined NTDs, in this article, we focus on neglected diseases of poverty, i.e., diseases that disproportionately affect poor and marginalized or, in other words, diseases of “neglected” populations. We begin with a summary of the history of social research activities supported by the Special Programme for Research and Training in Tropical Diseases (TDR) at the World Health Organization (WHO). We then highlight the ongoing and emerging challenges to sustain and extend research to improve the control of NTDs, all of which are also neglected diseases of poverty. We identify emerging research priorities and reflect on the challenges in mainstreaming these issues in research and disease control programs, drawing attention to the urgency of particular research questions.

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.

The Transtheoretical Model and Cervical Screening: Its application among culturally diverse communities in Queensland, Australia

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.

The Millennium Development Goals Fail Poor Children: The Case for Equity-Adjusted Measures

OBJECTIVES To apply the Transtheoretical Model of Behaviour Change (TTM) to cervical cancer screening to determine and report on the level of support required by different language and cultural groups in Queensland to enhance participation. The model consists of six stages: Pre-contemplation (no intention to be screened, no past action), Contemplation (intention to be screened, no past action), Action (intention to be screened, initial screening), Maintenance (intention to be screened, regular screening), Relapse (no intention to be screened, initial screening) and Relapse Risk (no intention to be screened, regular screening). DESIGN Focus groups and structured interviews were used to classify women in terms of the model and collect information regarding knowledge, health service contact barriers and enhancing factors and sources of information in relation to cervical cancer screening. The sample was recruited by bi-cultural workers for each community using snowball techniques. RESULTS The interview sample consisted of Australian South Sea Islanders, Chinese, German, Greek and Moslem women. There was no evidence of significant differences in TTM stage according to ethnicity. Women who intended to be screened in the future were more likely to have positive decisional balance scores and higher knowledge scores than women who did not. Women who had had Pap tests were significantly more likely to have received information from their general practitioner (GP) than women who had not had Pap tests. Women in Action and Maintenance were also more likely to have had their last Pap test by a female GP compared to women in relapse categories. Women in Pre-contemplation were more likely than women who had Pap tests to agree that they would travel a long way to see a practitioner who spoke their own language. CONCLUSION Classification based on the model was supported both by the decisional balance scale and measures of knowledge. Women in earlier stages of the model were more likely to express preferences for the provision of services in their own language and by a female. Cervical cancer screening among women in Action and Maintenance appeared to be better supported by GPs. Cervical cancer screening promotion for women of diverse cultures and ethnicities has tended to focus on Pre-contemplation and Contemplation stages, however, as most women in this sample were in Action or Maintenance, as are most Australian-born women, structuring cervical cancer screening promotion in terms of the TTM may significantly improve the effectiveness of interventions for women of diverse cultures and ethnicities.