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.
Monitoring equity and research policy
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.
Many countries in the African region do not have functional national health research systems (NHRS) that generate, disseminate, uses, and archives health-related knowledge/ideas in published form (hard, electronic or audio forms). In such countries, death of each modern or traditional health practitioner constitutes a permanent loss of a library of knowledge, ideas, innovations and inventions. The WHO African Advisory Committee on Health Research and Development (AACHRD) has attributed the fragility of NHRS in the Region to poor environment for research, inadequate manpower, inadequate infrastructures and facilities, inaccessibility to modern technology, and lack of funds. The weak and uncoordinated NHRS partly explain the poor overall performance of majority of national health systems in the Region. Continued fragility of NHRS can be attributed to lack of implementation of the WHO Regional Committee for Africa and the World Health Assembly resolutions on health research. This paper urges African countries, to fully implement the contents of those resolutions, for substantive health research outputs to share with the rest of the world at the next Ministerial Summit on Research for Health, which will take place in the African Region in 2008.
Public health programmes operate without uniform, empirical measures, a fact often forgotten amidst recent enthusiasm for modelling public health on the private sector, where the dollar dictates strategic and operational priorities. As a result, it is surprisingly difficult to determine whether or not public health interventions work and whether their benefits are equitably distributed. Certainly, the medical bases for most interventions are sound. There can be little doubt that standardised treatment regimens cure tuberculosis or that oral rehydration resuscitates children with diarrhoeal illnesses. History, however, shows that medical science is neither necessary nor sufficient for effectiveness. Public health interventions succeeded in controlling problems from scurvy to smallpox to cholera to puerperal fever decades before medical science identified causative agents or specific therapies. Proof that medical interventions work is generated in carefully controlled, highly resourced environments. The validity of this evidence must be re-evaluated after translation into policy, especially in the poor, chaotic conditions of the developing world. The same interventions are seldom evaluated in low-resource comparison groups and, indeed, the same measures of effectiveness – like CD4 count or ejection fraction – would be impractical. Such conditions pose enormous challenges to research and implementation alike. Resources are limited, data are scarce, bias is abundant and few validated techniques exist for analysis on a scale larger than the individual case study.
The annual meetings of the Global Forum are premier international events for stakeholders in health research for development. This Forum 11 report provides an overview and synthesis of the key issues discussed and conclusions reached. These include: the need for additional research; better systems of organizing and funding research, for ensuring participation in the process by all the stakeholders and for facilitating research to ensure impact on the health of those in need. Other central themes include: expanding the use of evidence in policy- and decision-making; equity and human rights (access and inclusion); encouraging innovation in research; research priority setting; research capacity strengthening; possibilities with inter-sectoral collaboration; advocacy for more research and resources; and communication of research results.
In preparation for the forthcoming Ministerial Forum on Health Research, to be held in Bamako, Mali in November 2008, more than 40 researchers from 28 countries, both in the South and the North, who have a particular interest in health policy and systems research (HPSR) and the application of evidence to health policy, gathered in Nyon, Switzerland on 25-27th May to: critically assess developments in HPSR in low and middle income countries and its application to policy since the Mexico Summit, 2004; highlight current gaps, priorities and challenges in the HPSR field that need to be addressed; and discuss and agree how best to move forward the HPSR field. Meeting participants reviewed evidence about the evolution of the HPSR field and debated emerging needs, with a view to informing discussions at Bamako, and further action by the institutions sponsoring and participating in the meeting, as well as by other key stakeholders including national governments, researchers, research and development funders.
Inadequate reporting is problematic for several reasons. If authors do not provide sufficient details concerning the conduct of their study, readers are left with an incomplete picture of what was done. As such, they are not able to judge the merits of the results and interpret them. The EQUATOR Network is a new initiative aimed at improving the clarity and transparency of reporting health research.