Monitoring equity and research policy

Validating estimates of prevalence of non-communicable diseases based on household surveys: the symptomatic diagnosis study
James SL; Romero M; Ramírez-Villalobos D; Gómez S; Pierce K; Flaxman A; Serina P; Stewart A; Murray CJL; Gakidou E; Lozano R; Hernandez B: BMC Medicine 13(15), 2015

Easy-to-collect epidemiological information is critical for the more accurate estimation of the prevalence and burden of different non-communicable diseases around the world. Current measurement is restricted by limitations in existing measurement systems in the developing world and the lack of biometry tests for non-communicable diseases. Diagnosis based on self-reported signs and symptoms (“Symptomatic Diagnosis,” or SD) analysed with computer-based algorithms may be a promising method for collecting timely and reliable information on non-communicable disease prevalence. This study developed and assessed the performance of a symptom-based questionnaire to estimate prevalence of non-communicable diseases in low-resource areas. The authors collected 1,379 questionnaires in Mexico from individuals who suffered from a non-communicable disease that had been diagnosed with gold standard diagnostic criteria or individuals who did not suffer from any of the 10 target conditions. To make the diagnosis of non-communicable diseases, the authors selected the Tariff method, a technique developed for verbal autopsy cause of death calculation. They assessed the performance of this instrument and analytical techniques at the individual and population levels. The questionnaire revealed that SD is a viable method for producing estimates of the prevalence of non-communicable diseases in areas with low health information infrastructure. This technology can provide higher-resolution prevalence data, more flexible data collection, and potentially individual diagnoses for certain conditions.

Video: Learning more about ethics in health systems research, Kenya
Kemri Wellcome Trust, Kenya, November 2014

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.

View Point: Ethical dilemmas in malaria vector research in Africa: Making the difficult choice between mosquito, science and humans
Ndebele P and Musesengwa R: Malawi Medical Journal; 24(3): 65-68, September 2012

Malaria vector studies are a very important aspect of malaria research as they assist researchers to learn more about the malaria vector. Research programmes in various African countries include studies that assess various methods of preventing malaria transmission including controlling the malaria vector. Various institutions have also established mosquito colonies that are maintained by staff from the institutions. Malaria vector research presents several dilemmas relating to the various ways in which humans are used in the malaria vector research enterprise. A review of the past and present practices reveals much about the prevailing attitudes and assumptions with regard to the ethical conduct of research involving humans. The focus on the science of malaria vector research has led some researchers in African institutions to engage in questionable practices which reveal the ethical tensions inherent in the choice between science and the principles of justice, nonmaleficence and respect for individuals. The analysis of past and present choices in malaria vector research has relevance to broader questions of human dignity and are in line with the current emphasis on ethical research worldwide.

What can we conclude from death registration? Improved methods for evaluating completeness
Murray CJL, Rajaratnam JK, Marcus J, Laakso T, Lopez AD: Public Library of Science Medicine 7(4), April 13, 2010

This paper systematically evaluates the performance of 234 variants of DDM methods in three different validation environments where the researchers knew or had strong beliefs about the true level of completeness of death registration. Using these datasets, it identified three variants of the DDMs that generally perform the best. It also found that even these improved methods yield uncertainty intervals of roughly one-quarter of the estimate. Finally, it demonstrates the application of the optimal variants in eight countries. In its conclusion, it notes that partial vital registration data in measuring adult mortality levels and trends still has a role, but such results should only be interpreted alongside all other data sources on adult mortality and the uncertainty of the resulting levels, trends, and age-patterns of adult death considered.

What is Zimbabwe’s real maternal mortality rate?
Mkudu M; van Wyk A: Africa Check, 2015

The authors report on conflicting figures for pregnancy and childbirth related deaths in Zimbabwe from 525 to 960 maternal deaths for every 100,000 live births. It would seem to be a relatively straightforward task to measure maternal mortality, but they note that in reality, that is not the case. Ideally, you would analyse death certificates, but even in countries with well-functioning birth and death registration systems, they report that the number of maternal deaths is routinely undercounted. This is because death certificates are not always complete and in some cases, the person signing a death certificate may not be aware that the woman was pregnant or that her pregnancy contributed in some way to her death. In some instances, health facilities have been known to try and conceal maternal mortalities because of political pressure to reduce the numbers. Zimbabwe is classified as a country with incomplete birth and death records by the UN. Researchers therefore rely on censuses and surveys to estimate maternal deaths. Household surveys reported 614 deaths / 100,000 live births for the period between 2007 and 2014, and 581 / 100 000 for 2009 to 2014, within the range of global organisations’ estimates.

What must be done to enhance capacity for health systems research?
Bennett S, Paina L, Kim C, Agyepong I, Chunharas S and McIntyre D: Global Symposium on Health Systems Research, 2010

This background paper was prepared for the Global Symposium on Health Systems Research, held from 16-19 November 2010 in Switzerland, and it is concerned with how best to enhance capacity for health systems research (HSR), with a particular focus on low- and middle-income countries (LMICs). A systematic review was conducted of initiatives and interventions that have sought to enhance capacity for health systems research, and 73 research papers were included - 49 papers from high-income countries (HICs) and 24 from low- and middle-income countries. The review found that capacity building initiatives focused primarily on the individual and organisational levels and paid less attention to the broader environment, such as national research funding systems and their links to HSR. Governments, donors and non-governmental organisations are urged to invest in co-ordinated efforts to develop additional capacity for health systems research, partly by re-directing funding that currently goes to short-term technical assistance towards longer-term institutional support.

What must be done to enhance capacity for health systems research?
Bennett S, Paina L, Kim C, Agyepong I, Chunharas S, McIntyre D and Nachuk S: World Health Organization, November 2010

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 discusses how best to enhance capacity for health systems research (HSR), with a particular focus on low- and middle-income countries (LMICs). A systematic review was conducted of initiatives and interventions that have sought to enhance capacity for health systems research. The review sought to identify and include all papers that described a capacity development initiative for health systems or health services research. Out of 73 articles identified, 24 papers were concerned with LMICs. The articles found in the review focused primarily on the individual and organisational levels and paid less attention to the broader environment such as national research funding systems and their links to HSR. This may be because many of the papers were from high-income countries, where the challenges faced are somewhat different in nature to LMICs. Given the very weak evidence found through the systematic review, the recommendations build upon the findings from the review, but also draw upon the experience of the authors, to identify promising avenues for capacity development in the future.

What shapes research impact on policy? Understanding research uptake in sexual and reproductive health policy processes in resource-poor contexts
Sumner A, Crichton J, Theobald S, Zulu E and Parkhurst J: Health Research Policy and Systems 9(Suppl 1): S3, 16 June 2011

Assessing the impact that research evidence has on policy is complex, the authors of this paper argue, and they review some of the main conceptualisations of research impact on policy, including generic determinants of research impact identified across a range of settings, as well as the specificities of sexual and reproductive health (SRH) in particular. They identify aspects of the policy landscape and drivers of policy change commonly occurring across multiple sectors and studies to create a framework that researchers can use to examine the influences on research uptake in specific settings, to guide attempts to ensure uptake of their findings. The framework distinguishes between pre-existing factors influencing uptake and the ways in which researchers can actively influence the policy landscape and promote research uptake through their policy engagement actions and strategies. The authors conclude by highlighting the need for continued multi-sectoral work on understanding and measuring research uptake and for prospective approaches to receive greater attention from policy analysts.

What you count is what you target: The implications of maternal death classification for tracking progress towards reducing maternal mortality in developing countries
Cross S, Bell JS and Graham WJ: Bulletin of the World Health Organization 88(2): 147–153, February 2010

The first target of the fifth United Nations Millennium Development Goal is to reduce maternal mortality by 75% between 1990 and 2015. According to this article, the target is critically off track. Despite difficulties inherent in measuring maternal mortality, it notes that interventions aimed at reducing it must be monitored and evaluated to determine the most effective strategies in different contexts. In some contexts, the direct causes of maternal death, such as haemorrhage and sepsis, predominate and can be tackled effectively through providing access to skilled birth attendance and emergency obstetric care. In others, indirect causes of maternal death, such as HIV and AIDS and malaria, make a significant contribution and require alternative interventions. Methods of planning and evaluating maternal health interventions that do not differentiate between direct and indirect maternal deaths may lead to unrealistic expectations of effectiveness or mask progress in tackling specific causes. The article analyses historical data from England and Wales and contemporary data from Ghana, Rwanda and South Africa.

When ethics and politics collide in donor-funded global health research
Storeng K; Palmer J: The Lancet, doi: https://doi.org/10.1016/S0140-6736(19)30429-5, 2019

In this paper, the authors share their experience of censorship in evaluation research for global health. Their experience shows a broader trend of external funders and implementing partners who deliberately use ethical and methodological arguments to undermine essential research. In a context of chronic underfunding of universities and their growing dependence on externally-driven research grants, the authors propose several structural and cultural changes to prevent manipulation of research governance systems and to safeguard the independence of research. While they acknowledge censorship to be a strong word, they justify its use in situations found where researchers in commissioned research-based evaluations are asked by funders to omit important results from their final report. The authors note that universities' provide methodological and subject area expertise and strong systems of research ethics and governance, but also observe that current systems are ill equipped to deal with these challenges.

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