Monitoring equity and research policy

Recording patient responses in low-income countries: Does the tool make a difference?
Karen Cheng: WHO, September 2008

The introduction of information and communications technology into a developing nation setting poses unique challenges. A recent randomised controlled trial done in Luanda, Angola, surveyed 231 people to assess their risk for HIV infection. In half of the surveys, the interviewers used a PDA to note participant responses. In the other half, the interviewers used paper and pencil. Other than the difference in these tools to record responses, the two groups were essentially the same. People in the PDA group gave, on average, 2.4 socially desirable responses (out of 9 possible), compared to 1.4 for participants in the paper-and-pencil group. That is, people seemed to exaggerate how safe their behaviours were when they were faced with an interviewer using a PDA. This finding suggests that the good intentions of introducing ICT into health-care settings in low-income countries may have unintended consequences if tests of its effects are not done beforehand.

Social Watch releases 2008 Basic Capabilities Index
Social Watch: September 2008

According to the 2008 Basic Capabilities Index, the Millennium Development Goals will not be achieved by 2015 at the present rate of progress, unless substantial changes occur. Progress in basic social indicators slowed down last year all over the world. Out of 176 countries for which a BCI figure could be computed, only 21 registered noticeable progress in relation to their score in 2000. Another 55 countries showed some progress, but at a slow rate, while 77 countries stagnated or worsened. Information is insufficient to show trends for the remaining 23. As the impact of the food crisis that started in 2006 begins to be registered by the new statistics coming in, the situation is likely to get worse in the next months.

South Africa: Questions about new HIV prevalence survey
PlusNews, 9 September 2008

Several prominent demographers and scientists have vigorously refuted Health Minister Manto Tshabalala-Msimang's claim that South Africa's HIV epidemic is declining and that the country 'may be making some real progress in its response to the HIV epidemic'. Tshabalala-Msimang's statement was based on a national survey of HIV prevalence among pregnant women, which researchers are describing as deeply flawed. The authors detected a problem when they noticed that changes in prevalence by age group did not tally with the change in overall prevalence, and that district figures were inconsistent with provincial estimates. They deduced that, in the 2006 survey, the results from district antenatal clinics were simply totalled to derive prevalence estimates for the country's nine provinces, but, in the 2007 survey, the health department began weighting provincial figures according to age groups, based on general population estimates for age distribution.

The quality of medical advice in low-income countries
Das J, Hammer J and Leonard K: World Bank, 2008

This paper provides an overview of recent work on measuring the quality of medical care in four low- and middle-income countries: India, Indonesia, Tanzania, and Paraguay. The authors describe methods of testing and watching doctors that are relatively easy to implement and yield important insights about the nature of medical care in these countries. The paper discusses the properties of these measures and how they may be used to evaluate policy change. Finally, it outlines an agenda for further research and quality measurement tools. Researchers found the competence of doctors in low-income countries to be insufficient, quality of patient care is even worse than suggested by doctors' competence levels and the poor have access to worse quality care than the rich, in both public and private sectors. Standard measures of health care quality in low-income countries, which are based on an assessment of physical infrastructure, are inadequate. Further research with better methods of measuring of these aspects of quality is required.

Compensating clinical trial participants from limited-resource settings in internationally sponsored clinical trials: A proposal
Ndebele P, Mfutso-Bengo J and Mduluza T: Malawi Medical Journal 20(2):42–45, 2008

Trial participants from limited-resource settings often are given very little or nothing in terms of compensation for time, inconvenience and risks, as compared to their counterparts from developed countries. The reason most often cited by researchers, ethics committees and sponsors is the avoidance of undue inducements. This paper discusses the inherent conflict that may arise in trying to avoid undue inducement and in trying to minimise injustice in international research. It argues that research participants from both industrialised nations and limited-resource countries should be compensated equally since they suffer the same burdens and equally contribute towards the study by contributing the same product data.

Developing health systems research capacities through North-South partnership: An evaluation of collaboration with South Africa and Thailand
Mayhew SH, Doherty J and Pitayarangsarit S: Health Research Policy and Systems 6(8), 2008

Over the past ten years calls to strengthen health systems research capacities in low- and middle-income countries have increased. One mechanism for capacity development is the partnering of northern and southern institutions; however, detailed case-studies of north-south partnerships, at least in the domain of health systems research, remain limited. This study aims to evaluate the partnerships developed between the Health Economics and Financing Programme of the London School of Hygiene & Tropical Medicine and three research partners in South Africa and Thailand to strengthen health economics-related research capacity. Five years of formal partnership resulted in substantial strengthening of individual research skills and moderate institutionalised strengthening in southern partner institutions. Activities included joint proposals, research and articles, staff exchange and post-graduate training. In South Africa, local post-graduate teaching programs were strengthened, regular staff visits/exchanges initiated and maintained and funding secured for several large-scale, multi-partner projects. These activities could not have been achieved without good personal relationships between members of the partner institutions, built on trust developed over twenty years. In South Africa, a critical factor was the joint appointment of a London staff member on long-term secondment to one of the partner institutions. As partnerships mature the needs of partners change and new challenges emerge. Partners' differing research priorities need to be balanced and equitable funding mechanisms developed recognising the needs and constraints faced by both southern and northern partners. Institutionalising partnerships (through long-term development of trust, engagement of a broad range of staff in joint activities and joint-appointment of staff), and developing responsive mechanisms for governing these partnerships (through regular joint negotiation of research priorities and funding issues), can address these challenges in mutually acceptable ways. Most importantly, this study has shown that it is possible for long-term north-south partnership commitments to yield fruit and to strengthen the capacities of public health research and training institutions in less developed countries.

HIV pre-exposure prophylaxis trials: Socio-economic and ethical perspectives for sub-Saharan Africa
Selemogo M: African Journal of AIDS Research 7(2): 243–247, 2008

The advent of HIV pre-exposure prophylaxis (PrEP) as a HIV-prevention strategy has received optimistic support among HIV researchers. However, discourse on PrEP trials has tended to be dominated by the disputes arising between some activist groups and researchers about the research methodologies. Instead, this paper discusses other issues oftentimes neglected in discussions relating to PrEP trials. Specifically, it focuses on the possible ethical implications and the potential impact of sub-Saharan Africa's socio-economic conditions on the promised benefits of PrEP trials for the region and the continent. We argue that the concept of PrEP as a affordable and practical HIV-prevention intervention presents challenges and questions that urgently need addressing as researchers await results from several ongoing trials. If research is undertaken with no plans on how the results of specific trials can render actual HIV-prevention-benefits — especially for the world's poor — then such endeavours risk being merely information-acquiring ventures.

Maternal mortality in South Africa in 2001: from demographic census to epidemiological investigation
Garenne M, McCaa R and Nacro K: Population Health Metrics 6(4), 21 August 2008

Maternal mortality remains poorly researched in Africa, and is likely to worsen dramatically as a consequence of HIV/AIDS. The 2001 census of South Africa included a question on deaths in the previous 12 months, and two questions on external causes and maternal mortality, defined as "pregnancy-related deaths". A microdata sample from the census permits researchers to assess levels and differentials in maternal mortality, in a country severely affected by high death rates from HIV/AIDS and from external causes. After correcting for several minor biases, our estimate of the Maternal Mortality Ratio (MMR) in 2001 was 542 per 100,000 live births. This level is much higher than previous estimates dating from pre-HIV/AIDS times. This high level occurred despite a relatively low proportion of maternal deaths (6.4%) among deaths of women aged 15-49 years, and was due to the astonishingly high level of adult mortality, some 4.7 times higher than expected from mortality below age 15 or above age 50. The main reasons for these excessive levels were HIV and AIDS and external causes of deaths. The differentials in MMR were considerable: 1 to 9.2 for population groups (race), 1 to 3.2 for provinces, and 1 to 2.4 for levels of education. Relationship with income and wealth were complex, with highest values for middle income and middle wealth index. Demographic census microdata offer the opportunity to conduct an epidemiologic analysis of maternal mortality. Indirect causes of maternal deaths appear much more important than direct obstetric causes. The MMR appears no longer to be a reliable measure of the quality of obstetric care or a measure of safe motherhood.

Why do individuals agree to enrol in clinical trials? A qualitative study of health research participation in Blantyre, Malawi
Mfutso-Bengo, J Ndebele, P Jumbe, V Mkunthi, M Masiye, F Molyneux S and Molyneux M: Malawi Medical Journal 20(2):37–41, 2008

Current literature suggests that therapeutic misconception – a belief by participants in a clinical trial that they are in fact simply being given clinical care – is common, especially among illiterate populations in developing countries. In this study, most participated in research for the sake of obtaining better quality treatment made available through the clinical trials as ancillary care. Their consent to participate was not due to a belief that the actual procedures of the trial would directly benefit their health but due to government hospitals being crowded and commonly lacking drugs. In this environment, people make rational decisions to participate in research. This paper questions whether the term ‘therapeutic misconception' accurately describes participants' motivation under conditions of limited resources and discusses the issue of undue inducement in clinical trials.

Why do people refuse to take part in biomedical research studies? Evidence from a resource-poor area
Mfutso-Bengo J, Masiye F, Molyneux M, Ndebele P and Chilungo A: Malawi Medical Journal 20(2):57–63, 2008

Participants' refusal to take part in research is an unpleasant experience that investigators face. This paper highlights some of the reasons why people from resource-poor settings refuse to take part in health research, highlighting standards that investigators can adopt to avoid unnecessary refusals and at the same time ensure that individuals have the right to participate and freedom to refuse. The researchers conducted focus group discussions with people who had refused to take part in a number of biomedical research studies but agreed to be interviewed in this study. They found nine key factors that influence people to refuse to participate in biomedical research: failure to follow traditional customs, lack of study benefits, superstition, poor informed-consent procedures, ignorance of health research, fear of strangers, lack of cultural sensitivity, poor timing and previous bad research experiences. They recommend that researchers must embark on community engagement before implementing their studies.

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