This book is offered as a first attempt to understand what responsible data means in the context of international development programming. It takes a broad view of development and also anticipates that some of the methods and lessons may have resonance for related fields and practitioners. It is intended to support thoughtful and responsible thinking as the development community grapples with relatively new social and ethical challenges stemming from data use. This book builds on a number of resources and strategies developed in academia, human rights and advocacy, but aims to focus on international development practitioners so touches primarily upon issues specifically relevant to development practitioners and intermediaries working to improve the lives and livelihoods of people.
Monitoring equity and research policy
Equity should be implicit within universal health coverage (UHC) however, emerging evidence is showing that without adequate focus on measurement of equity, vulnerable populations may continue to receive inadequate or inferior health care. This narrative review aims to: (i) elucidate how equity is contextualised and measured within UHC, and (ii) describe tools, resources and lessons which will assist decision makers to plan and implement UHC programmes which ensure equity for all. Eighteen journal articles consisting mostly of secondary analysis of country data and qualitative case studies in the form of commentaries/reviews, and 13 items of grey literature, consisting largely of reports from working groups and expert meetings focusing on defining, understanding and measuring inequity in UHC (including recent drafts of global/country monitoring frameworks) were included. The literature advocates for progressive universalism addressing monetary and non-monetary barriers to access and strengthening existing health systems. This however relies on countries being effectively able to identify and reach disadvantaged populations and estimate unmet need. Recently published resources contextualise equity as a measurable component of UHC and propose several useful indicators and frameworks. Country case-studies also provide useful lessons and recommendations for planning and implementing equitable UHC which will assist other countries to consider their own requirements for UHC monitoring and evaluation.
Health systems research is increasingly being funded by international donors and conducted in low and middle-income countries but little conceptual work has been done to clarify the field’s ethical dimensions. This is problematic because health systems research has distinctive features relative to clinical research that may restrict the applicability of existing ethical guidance. This webinar asks: What makes health systems research different from clinical research? What are the key ethical issues in externally-funded health systems research in low and middle-income countries? And do they deserve special consideration in, for example, project design and ethics review? The moderated discussion covers the features of health systems research and examples of what it entails in practice, distinctive ethical issues that arise during the conduct of such research and challenges faced by ethics review committees when considering health systems research projects.
This paper uses available data to describe health inequalities experienced by diverse Aboriginal peoples in Canada. Its method is useful for those working on indigenous people's health in other regions. The data are organized around social determinants of health across the life course and provide evidence that not only demonstrates important health disparities within Aboriginal groups and compared to non-Aboriginal people, but also links social determinants, at proximal, intermediate and distal levels, to health inequalities. The Integrated Life Course and Social Determinants Model of Aboriginal Health is introduced as a promising conceptual framework for understanding the relationships between social determinants and various health dimensions, as well as examining potential trajectories of health across the life course. Data from diverse and often limited literature is provided to support claims made by the authors of this paper and others about health disparities among Aboriginal peoples and the degree to which inequalities in the social determinants of health act as barriers to addressing health disparities.
In this video researchers from Kemri Wellcome Trust in Kenya outline some of the ethical dilemmas that they encounter in their day to day lives. RinGs is a project and learning platform that aims to support researchers on understanding and integrating gender and ethics into their work.
This is the draft report of the UN Secretary General’s Expert Advisory group on the data revolution for sustainable development. This report is not about how to create a data revolution – it is argued to be already happening – but how to mobilise it for sustainable development. In the first section the authors describe what the data revolution is, and the opportunities and pitfalls it presents. The second section highlights the current state of data, and the kind of world the authors foresee if the promise of the revolution is realised. Finally, the third section provides a “vision” of a possible world of data in 2030, and some recommendations for how to achieve it. The authors believe that governments, and governments acting together through the UN, have a crucial role to play. This report offers options for using the data revolution not only to monitor progress towards sustainable development goals, but also to accelerate their achievement.
Monitoring inequalities in health is fundamental to the equitable and progressive realization of universal health coverage (UHC). A successful approach to global inequality monitoring must be intuitive enough for widespread adoption, yet maintain technical credibility. This article discusses methodological considerations for equity-oriented monitoring of UHC, and proposes recommendations for monitoring and target setting. Inequality is multidimensional, such that the extent of inequality may vary considerably across different dimensions such as economic status, education, sex, and urban/rural residence. Hence, global monitoring should include complementary dimensions of inequality (such as economic status and urban/rural residence) as well as sex. For a given dimension of inequality, subgroups for monitoring must be formulated taking into consideration applicability of the criteria across countries and subgroup heterogeneity. For economic-related inequality, the authors recommend forming subgroups as quintiles, and for urban/rural inequality the authors recommend a binary categorization. Inequality spans populations, thus appropriate approaches to monitoring should be based on comparisons between two subgroups (gap approach) or across multiple subgroups (whole spectrum approach). When measuring inequality absolute and relative measures should be reported together, along with disaggregated data; inequality should be reported alongside the national average. The authors recommend targets based on proportional reductions in absolute inequality across populations. Building capacity for health inequality monitoring is timely, relevant, and important. The development of high-quality health information systems, including data collection, analysis, interpretation, and reporting practices that are linked to review and evaluation cycles across health systems, will enable effective global and national health inequality monitoring. These actions will support equity-oriented progressive realization of UHC.
The South African health system is tiered with the minority of the population using private health services and the majority relying mainly on tax-funded health services. South Africa (SA) bears a quadruple burden of disease com-prising tuberculosis, HIV and AIDS, high levels of maternal and child mortality, injuries, and non-communicable dis-eases. The burden of these diseases falls most heavily on the poor. In 2007 the SA government committed itself to implementing National Health Insurance (NHI) in order to move the country toward universal health coverage (UHC). This paper, as part of a series of case studies commissioned by the World Health Organization (WHO) to develop ap-propriate measures of UHC, provides a case study of SA’s current situation in relation to UHC using the WHO-proposed indicator framework. Drawing on different national data sources, the paper shows that disparities exist in the proposed indicators in the SA context. The paper notes that the framework may be more appropriate for monitoring progress towards UHC over time, rather than as a tool for evaluating a country’s status relative to UHC goals at a single point in time. This paper also points to the need to have UHC-related ‘benchmarks’ against which to compare country data. Further, the proposed indicators by themselves do not provide clear insights into health system reforms required to promote UHC; there is need for a more detailed system-level analysis.
This paper summarizes the findings from 13 country case studies and five technical reviews, which were conducted as part of the development of a global framework for monitoring progress towards Universal health coverage (UHC). The case studies show the relevance and feasibility of focusing UHC monitoring on two discrete components of health system performance: levels of coverage with health services and financial protection, with a focus on equity. These components link directly to the definition of UHC and measure the direct results of strategies and policies for UHC. The studies also show how UHC monitoring can be fully embedded in often existing, regular overall monitoring of health sector progress and performance. Several methodological and practical issues related to the monitoring of coverage of essential health services, financial protection, and equity, are highlighted. Addressing the gaps in the availability and quality of data required for monitoring progress towards UHC is critical in most countries.
Passion. It is not a word that is used often in the health systems discourse, and it may be the last word that people outside of health systems circles would associate with our work. But, the authors argue in this blog, passion is what emerged throughout the recent Third Global Symposium on Health Systems Research in Cape Town, South Africa. Across two jam-packed days of satellite events and another three days of conference sessions, the 1,700 participants from 92 countries collectively made the symposium into a unique teaching, learning and networking opportunity. Whether people approach health systems from the realms of academia, policy-making, civil society or elsewhere, they are excited about the potential for the levers of various forms of health systems to be triggered in ways that will make the world a healthier and more equitable place. Being able to share that excitement with other people is an invaluable and invigorating experience. In early 2015, the leadership of Health Systems Global is likely to develop concrete strategies and initiatives to foster a more diverse membership base and encourage representation of more regions and countries in the global health systems discourse.