The Orphaned and Separated Children's Assessments Related to their Health and Well-Being (OSCAR) project is a longitudinal cohort of orphaned and non-orphaned children in Kenya. To date the study has enrolled 3,130 orphaned and separated children. In this paper, the authors use this project to describe how community-based participatory research (CBPR) approaches and principles can be incorporated and adapted into study design and methods. Preliminary results suggest that community engagement and participation was integral in refining the study design and identifying research questions that were impacting the community. Through the participation of village chiefs and elders, researchers were able to successfully identify eligible households and randomise the selection of participants. The on-going contribution of the community in the research process was also vital to participant retention and data validation while ensuring cultural and community relevance and equity in the research agenda. In conclusion, the authors argue that CBPR methods can strengthen epidemiological and public health research in sub-Saharan Africa within the social, political, economic and cultural contexts of the diverse communities on the continent, provided that the methods are adapted to the local context.
Monitoring equity and research policy
Qualitative and quantitative indicators are useful tools for promoting and monitoring the implementation of human rights. International human rights treaties and jurisprudence of the human rights treaty bodies call for the development of statistical indicators in compliance with international human rights norms and principles. The Office of the High Commissioner for Human Rights (OHCHR) has published this guide to assist in developing quantitative and qualitative indicators to measure progress in the implementation of international human rights norms and principles. The Guide describes the conceptual and methodological framework for human rights indicators recommended by international and national human rights mechanisms and used by a growing number of governmental and non-governmental actors. It provides concrete examples of indicators identified for a number of human rights - all originating from the Universal Declaration of Human Rights - and other practical tools and illustrations, to support the realization of human rights at all levels. It will be of interest to human rights advocates as well as policymakers, development practitioners, statisticians and others who are working to make human rights a reality for all.
Following a literature review and an analysis of health research priority-setting exercises that have been organised or coordinated by the World Health Organization since 2005, this article proposes a checklist for health research priority-setting that allows for informed choices on different approaches and ensures good practice. The list is intended to provide generic assistance for planning health research prioritisation processes. The nine themes in the checklist are: identifying contextual factors; using a comprehensive approach; ensuring inclusiveness in decision-making processes; identifying and gathering relevant information; planning for implementation; selecting criteria for setting priorities; choosing methods for selecting priorities; evaluating priorities; and writing a report that will make the process that was followed transparent.
This paper describes how the SUPPORT collaboration developed a short summary format for presenting the results of systematic reviews to policy-makers in low- and middle-income countries (LMICs). SUPPORT carried out 21 user tests in six countries – including South Africa and Uganda – to explore users’ experiences with the summary format. They found that policy makers liked a graded entry format (i.e. short summary with key messages up front). Policy makers particularly valued the section on the relevance of the summaries for LMICs, which compensated for the lack of locally relevant detail in the original review. The authors conclude that presenting evidence from systematic reviews to policy makers in LMICs in the form of short summaries can render the information easier to assimilate and more useful, but summaries must be clear and easy to read or scan quickly. Policy makers should also be sensitised to the nature of the information provided by systematic reviews and its relevance for policy decisions.
Evaluation of large-scale programmes and initiatives aimed at improvement of health in countries of low- and middle-income needs a new approach, according to this article. Traditional designs, which compare areas with and without a given programme, are no longer relevant at a time when many programmes are being scaled up in virtually every district in the world. The authors propose an evolution in evaluation design: a national platform approach that uses the district as the unit of design and analysis, is based on continuous monitoring of different levels of indicators and gathers additional data before, during, and after the period to be assessed by multiple methods. The approach uses several analytical techniques to deal with various data gaps and biases and includes interim and summative evaluation analyses. It is intended to promote country ownership, transparency and coordination of external funding, while providing a rigorous comparison of the cost-effectiveness of different scale-up approaches.
Collaboration between policy, practice and research is imperative to obtaining more solid evidence in public health. However, the three domains do not easily work together because they emanate from three more-or-less independent 'niches', the authors of this study argue. They conducted a literature review of qualitative descriptive research published in English and Dutch between 1980 and 2006, and analysed literature according to the four steps of the policy, practice and research work cycles: problem recognition, approach formulation, implementation and evaluation. They found conspicuous differences in approach formulation and implementation that strengthen the niche character of each domain and hamper integration and collaboration. Disconnections ranged from formulating priorities in problem statements to power roles, appraisal of evidence, work attitudes, work pace, transparency of goals, evaluation and continuation strategies and public accountability. Creating awareness of these disconnections may result in more compatibility between researchers, policy makers and practitioners. This analysis can be used by public health services-related researchers, practitioners and policy makers to take into account the risk for disconnections. The authors recommend practice- and policy-based research networks to establish strong links between researchers, policy makers and practitioners to improve public health.
The authors of this study reviewed social science and interdisciplinary research in neglected tropical diseases (NTDs). They conducted a bibliographic analysis of neglected NTD-related research papers published over the past 10 years in biomedical and social sciences, focusing on specific NTDs, namely chikungunya, dengue, visceral leishmaniasis and onchocerciasis. According to the review, there is substantial variation in the number of publications associated with each disease. The proportion of the research that is social science based appears remarkably consistent. A textual analysis, however, revealed a degree of misclassification by the abstracting service, where a surprising proportion of the ‘social sciences’ research was actually pure clinical research. Much of the social sciences research also tends to be ‘hand maiden’ research focused on the implementation of biomedical solutions. The authors conclude there is little evidence that scientists pay any attention to the complex social, cultural, biological and environmental dynamic involved in human pathogenesis. They found little investigator-driven social science research and a poor presence of interdisciplinary science. NTD research needs more sophisticated funders and priority setters who are not beguiled by uncritical biomedical promises, they argue.
In this study, the authors analysed the spending of the Bill and Melinda Gates Foundation, a major independent international funder, on neglected tropical diseases (NTDs). They included 67 projects funded between October 1998 and November 2008, 55% of which were from Africa. Projects were categorised as social science or non-social science research. The authors found that 26 projects (39%) were social science related while 41 projects (61%) were basic science or other translational research, including drug development. A total of US$697 million was spent to fund the projects, of which 35% (US$241 million) went to social science research. Although the level of funding for social science research has generally been lower than that for non-social science research over the past ten years, social science research attracted more funding in 2004 and 2008. The authors argue that, due to the high demand for improved delivery and utilisation of current NTD drugs/technologies, which are informed by social science-based research, funding priorities need to reflect greater investment in this type of research into NTDs.
In this study, researchers developed a simple, generalisable method for measuring research output to support attempts to build research capacity, and in other contexts. They developed an indicator of individual research output, based on grant income, publications and numbers of PhD students supervised. They then used the indicator to measure research output from two similarly-sized research groups in different countries. Research output scores of 41 staff in Research Department A had a wide range, from zero to 8; the distribution of these scores was highly skewed. Only about 20% of the researchers had well-balanced research outputs, with approximately equal contributions from grants, papers and supervision. Over a five-year period, Department A's total research output rose, while the number of research staff decreased slightly, in other words research productivity (output per head) rose. Total research output from Research Department B, of approximately the same size as A, was similar, but slightly higher than Department A. The authors conclude that their proposed indicator can be used for comparisons within and between countries. Modelling can be used to explore the effect on research output of changing the size and composition of a research department.
The primary objective of this study was a comprehensive re-estimation of disability weights that quantify health losses for all non-fatal consequences of disease and injury for the Global Burden of Disease Study 2010. A total of 13,902 respondents were interviewed in Bangladesh, Indonesia, Peru and Tanzania, and 16,328 in a web survey. Analysis of paired comparison responses indicated a high degree of consistency across surveys: correlations between individual survey results and results from analysis of the pooled dataset were 0.9 or higher in all surveys except in Bangladesh (0.75). Most of the 220 disability weights were located on the mild end of the severity scale, with 58 (26%) having weights below 0.05. Five (11%) health states had weights below 0.01, such as mild anaemia, mild hearing or vision loss, and secondary infertility. The health states with the highest disability weights were acute schizophrenia (0.76) and severe multiple sclerosis (0.71). The researchers identified a broad pattern of agreement between the old and new weights (0.70), particularly in the moderate-to-severe range. However, in the mild range below 0.2, many states had significantly lower weights in this study than previously. In contrast with the popular hypothesis that disability assessments vary widely across samples with different cultural environments, the results of this study suggest highly consistent results.