In this paper, the authors discuss open source approaches for research and development (R&D) for neglected diseases, and their potential to lower costs and R&D time frames, increase collaboration and build a knowledge commons. They describe existing initiatives and debates, and suggest how readers and the global health community might better make use of open source approaches. While most of the open source initiatives examined in the review appear to demonstrate significant potential, the authors conclude that hard evidence of impact appears to be limited thus far. They make three short-term recommendations. Governments and other stakeholders should first develop detailed profiles of open source initiatives for R&D into neglected diseases, then they should prioritise gaining more substantial and long-term investments into the area. Finally, they should start a demand-driven website incorporating a group weblog, which will act as a focal point for disparate threads of discussion as well as seeding connections and a sense of community.
Monitoring equity and research policy
With growing interest in methods to accelerate the development of drugs, vaccines and diagnostics for neglected diseases, product development partnerships (PDPs), non-profit research institutes and private sector groups have come together to conduct R&D in these areas. However, some argue that their efforts are disjointed and that funding flows inefficiently to individual research projects resulting in insufficient resources, funding volatility, poor resource allocation and duplicated, as well as unnecessary, efforts. In this paper, the authors evaluate several pooled funding mechanisms that have been proposed to address these problems: the Industry R&D Facilitation Fund (IRFF) originally proposed by the George Institute; the Fund for Research in Neglected Diseases (FRIND) proposed by Novartis; and the Product Development Partnership Financing Facility (PDP-FF) proposed by the International AIDS Vaccine Initiative (IAVI). These proposals are measured against two criteria: their capacity to raise additional money for neglected disease R&D and their capacity to improve the efficient allocation of those funds. The authors conclude that all three proposals had potential, but the challenge with deciding which proposal to implement is the lack of clarity and agreement on what exactly the core problems facing R&D funding flows for neglected diseases are.
The Soul City Institute for Health and Development Communication, a non profit organisation, was started in 1992 in a bid to reduce child mortality caused by dehydration. "Children were dying unnecessarily and it was because people did not know what they were supposed to be doing," says Goldstein. Information was widely available on the process of rehydration but it did not seem to be having an impact on the desired audience. After studying the situation, Soul City decided to launch a television soap opera to capture their target audience. A radio show and newspaper series quickly followed. In trying to describe the relationship between research and mass media campaigns, Goldstein uses the phrase "simplification versus complexity." At one end stands the scientist who seeks in-depth knowledge and at the other the ordinary non-scientific individual who prefers a simple explanation. Melissa Meyer, Project Coordinator for the HIV/AIDS and the Media Project, says, "Research and entertainment need not be at odds with each other. With just a slight adjustment in perspective, they can be used very effectively to complement each other."
The authors of this study aimed to illustrate the effects of failing to account for model uncertainty when modelling is used to estimate the global burden of disease, with specific application to childhood deaths from rotavirus infection. To estimate the global burden of rotavirus infection, different random-effects meta-analysis and meta-regression models were constructed by varying the stratification criteria and including different combinations of covariates. The models were then compared. The authors found that, in the models they examined, the estimated number of child deaths from rotavirus infection varied between 492,000 and 664,000. While averaging over the different models’ estimates resulted in a modest increase in the estimated number of deaths (541,000 as compared with the World Health Organization’s estimate of 527,000), the width of the 95% confidence interval increased from 105,000 to 198,000 deaths when model uncertainty was taken into account. The authors conclude that sampling variability explains only a portion of the overall uncertainty in a modelled estimate. The uncertainty owing to both the sampling variability and the choice of model(s) should be given when disease burden results are presented. Failure to properly account for uncertainty in disease burden estimates may lead to inappropriate uses of the estimates and inaccurate prioritisation of global health needs.
The current globally agreed definition of cumulative anti-retroviral therapy (ART) coverage is expressed as the number of individuals receiving ART at a point in time divided by the number of individuals who are eligible to receive treatment at the same point in time (including those who are already receiving ART). The authors of this paper acknowledge that so far it has proved an invaluable tool for promoting the systematic estimation of ART coverage at country level and for holding countries accountable through reporting requirements, such as those requested by the United Nations General Assembly Special Session on HIV/AIDS (UNGASS). But, as programmes mature and funding for ART becomes more uncertain, the increasing number of patients on ART included in the definition render the measure increasingly insensitive to annual changes in ART enrolment, the authors argue. In response to the need to expand reporting of ART access to include measures of recent enrolment, they propose a new definition to complement the existing UNGASS definition of ART coverage. The ratio of ART initiation to HIV progression is not only a better reflection of recent programme performance, the authors argue, but also a more robust measure that is less sensitive to model assumptions and to changes in ART eligibility criteria.
The first Human Development Report was released in 1990 and the 2010 edition marked the 20th anniversary of these annual United Nations Development Programme reports. A panel discussion at the report’s launch in early November 2010 discussed the findings of the report. David Morrison, Executive Secretary of the United Nations Capital Development Fund, noted how approaches in development 20 ago equated with economic growth and how this has changed, as people have become aware that any measurement of well-being should include opportunities for education and health, and the ability to use knowledge to shape one’s destiny. The panellists highlighted the innovative ways the report continues to measure poverty, including this year’s addition of three new indices, which allow researchers more leeway to compare findings. One of the new measures is the Multidimensional Poverty Index (MPI), a tool which aims to give a more accurate picture of acute poverty than traditional ‘dollar-a-day’ measures by considering indicators of health, education, and standard of living, in addition to income. One advantage of the tool is it indicates the source of poverty, giving policy makers some insight about causes and manifestations of poverty.
With rapidly increasing globalisation, trends towards unhealthy diets, obesity, sedentary lifestyles and unhealthy habits are resulting in an increased worldwide burden of chronic non-communicable diseases (NCDs). In Africa this means that health systems face the challenge of an increasing burden of NCDs as well as continuing high morbidity and mortality from communicable diseases. This health transition represents an enormous challenge to Africa as the region with the least resources for an effective response, the authors of this paper argue. As previous epidemics, including HIV, have caught Africa unprepared, they urge the health community to plan ahead for health transition in Africa. Health research is identified as having a key role to play in meeting health and development goals, and must be responsive to changing disease patterns, such as health transition. Key areas for further research suggested in this paper include: epidemiological research so that a good understanding of the distribution in Africa of communicable and non-communicable diseases can inform health planning; research on the interactions between communicable and non-communicable diseases; health system research with a particular focus on new approaches to improve the primary care response to health transition; and policy research to evaluate the more upstream measures addressing the population-level determinants of NCDs. The authors call on government and public health stakeholders to capitalise on the global policy environment, which is becoming more favourable to action on health transition in Africa, and implement a research agenda for health transition. Alliances have a key role to play in Africa as well as in other regions in implementing the research agenda on health transition by building research capacity and mobilising the necessary investments.
The purpose of this article is twofold: to explore the entry process in community-based research when researching sensitive topics; and to suggest a framework for entry that utilises the values of participatory action research (PAR). The article draws on a collaborative community-university research study that took place in the Waterloo and Toronto regions of Ontario, Canada, from 2005–2010. The article emphasises that community entry is not only about recruitment strategies for research participants or research access to community but it is also concerned with the ongoing engagement with communities during various stages of the research study. The indicator of success is a well established and trusted community-researcher relationship. This article first examines this broader understanding of entry, then looks at how community research entry can be shaped by an illustrative framework, or guide, that uses a combination of participatory action research (PAR) values and engagement strategies.
This paper was commissioned as a background discussion paper for the Global Symposium on Health Systems Research, held in Switzerland from 16-19 November 2010. It explores experiences of and factors that influence how knowledge from health systems research (HSR) is translated into policy and practice, particularly at the national level, in low- and middle-income countries (LMICs). It found that whether the knowledge from health systems research (HSR) is used in policy and practice in low- and middle-income countries (LMICs) depends on the political economy context, the policy environment, institutional capacities and practice in the health system, and the research community. The study aims to link these four ‘streams’ and their impact on HSR. Although not always well documented, there is experience within LMIC on the strategic use of HSR. There are also some conditions that appear to be a greater challenge for LMICs, particularly low-income countries (LICs). International agencies have a more powerful influence on research agendas and resources in LICs, while resources for sustained research programmes and interaction are limited, as are the incentives, time, resources and authority for local personnel to gather and use evidence. Much LIC research is poorly published in accessible databases and a significant digital divide discourages HSR and its use. Local level personnel, especially in peripheral areas, face these constraints most sharply.
The burden of chronic, non-communicable diseases in low-income and middle-income countries is increasing. This study outlines a framework for monitoring of such diseases and reviews the mortality burden and the capacity of countries to respond to them. It draws on World Health Organization (WHO) data and published work for prevalence of tobacco use, overweight, and cause-specific mortality in 23 low-income and middle-income countries with a high burden of non-communicable disease. Although reliable data for cause-specific mortality was scarce, non-communicable diseases were estimated to be responsible for 23.4 million (or 64% of the total) deaths in the 23 countries that were analysed, with 47% occurring in people who were younger than 70 years. Tobacco use and overweight were found to be common in most of the countries and populations we examined, but coverage of cost-effective interventions to reduce these risk factors is low. Capacity for prevention and control of non-communicable diseases, including monitoring and surveillance operations nationally, is inadequate. A surveillance framework, including a minimum set of indicators covering exposures and outcomes, is essential for policy development and assessment and for monitoring of trends in disease, the study argues. However, technical, human and fiscal resource constraints are major impediments to the establishment of effective prevention and control programmes. Despite increasing awareness and commitment to address chronic disease, the study found that concrete actions by global partners to plan and implement cost-effective interventions were inadequate.