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.
Monitoring equity and research policy
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 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.
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.
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.
This study was aimed at researching the reasons why mothers enrol their children in malaria clinical research and how family members or relatives are involved in the decision-making process. Issues related to informed consent were also a particular focus of this study. A total of 81 participants took part in eight focus group discussions, all of whom were mothers whose children had participated or were participating in Intermittent Prevention Therapy post-discharge (IPTpd) malaria research. Most of the participants reported that they chose to participate in the IPTpd research as a way of accessing better quality medical care and to benefit from the material and monetary incentives that were being given to participants for their participation. There was also a sense of trust in health workers who asked the potential participants to join the research. Most participants decide to take part in malaria research because of better medical treatment. Partners and relatives played a very small role in their decision-making process.
There is an increase in the amount of genetics research being conducted in both developed and limited-resource countries. Most of this research is sponsored by developed countries. There are concerns in limited-resource countries on how the benefits from this research are currently being shared or will be shared in the future. There is need for caution to ensure that populations from limited-resource countries are not exploited by being used as subjects in genetics research that is meant to benefit populations from developed countries. This paper addresses the issue of fairness in benefits sharing and argues for justice in the sharing of both burdens and benefits of genetics research. The paper responds to some of the issues and arguments in recent literature on the meaning and limits of the concept of benefit-sharing in human genetics research.
Scoping studies have been used across a range of disciplines for a wide variety of purposes. However, their value is increasingly limited by a lack of definition and clarity of purpose. The UK's Service Delivery and Organisation Research Programme (SDO) has extensive experience of commissioning and using such studies; twenty four have now been completed. This review article has four objectives; to describe the nature of the scoping studies that have been commissioned by the SDO Programme; to consider the impact of and uses made of such studies; to provide definitions for the different elements that may constitute a scoping study; and to describe the lessons learnt by the SDO Programme in commissioning scoping studies. Scoping studies are imprecisely defined but usually consist of one or more discrete components; most commonly they are non-systematic reviews of the literature, but other important elements are literature mapping, conceptual mapping and policy mapping. Some scoping studies also involve consultations with stakeholders including the end users of research. Scoping studies have been used for a wide variety of purposes, although a common feature is to identify questions and topics for future research. The reports of scoping studies often have an impact that extends beyond informing research commissioners about future research areas; some have been published in peer reviewed journals, and others have been published in research summaries aimed at a broader audience of health service managers and policymakers. Key lessons from the SDO experience are the need to relate scoping studies to a particular health service context; the need for scoping teams to be multi-disciplinary and to be given enough time to integrate diverse findings; and the need for the research commissioners to be explicit not only about the aims of scoping studies but also about their intended uses. This necessitates regular contact between researchers and commissioners. Scoping studies are an essential element in the portfolio of approaches to research, particularly as a mechanism for helping research commissioners and policy makers to ask the right questions. Their utility will be further enhanced by greater recognition of the individual components, definitions for which are provided.
It appears that the practice of giving cash or gift vouchers to research participants is becoming increasingly common; however, this practice has received little attention from social researchers. Paying participants has implications in terms of the ethical requirement for consent and may have consequences in terms of recruitment for research projects and for the data collected. In this paper the author considers how these issues arose in a research project with lone mothers and the way in which offering payments might help with gaining access to participants. She argues that the possible impact of making payments to research participants should be considered in research accounts and the possible impacts of payments should be more widely debated.
The Afrobarometer has developed an experiential measure of lived poverty called the Lived Poverty Index (LPI). It measures how frequently people go without basic necessities during the course of a year. This is a portion of the central core of the concept of poverty not captured by existing objective or subjective measures. The Lived Poverty Index is strongly related to the measurement of political freedoms, according to this study. It concludes that this measure does well at measuring the experiential core of poverty, and capturing it in a way that other widely used international development indicators do not.