Grand challenges in global health : community engagement in research in developing countries.
TL;DR: The authors argue that there have been few systematic attempts to determine the effectiveness of community engagement in research.
Abstract: Health (GCGH) initiative, discussed in the fi rst article in this series [3], we are exploring a range of ESC issues identifi ed by the GCGH investigators and developing world key informants, discussed in the second article in this series [4]. The investigators and key informants placed particular emphasis upon the importance of community engagement, and therefore we prepared a conceptual paper on this topic, which we distributed as a working paper to GCGH investigators and program staff at the 2nd Annual GCGH Meeting. In this article, we summarize this conceptual paper. We fi rst examine the concept of CE in research in developing countries, then we describe published models of CE, and fi nally we discuss two relevant examples of CE in research from Africa. What Is a Community?
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TL;DR: The context in which the diagnostics must operate, some of the appropriate diagnostic technologies already in distribution, and some emerging technologies that promise to address this challenge are reviewed.
Abstract: Biomedical engineers have traditionally developed technologies in response to the needs of the developed world's medical community. As a result, the diagnostic systems on which they have worked have met the requirements of well-funded laboratories in highly regulated and quality-assessed environments. However, such approaches do not address the needs of the majority of the world's people afflicted with infectious diseases, who have, at best, access to poorly resourced health care facilities with almost no supporting clinical laboratory infrastructure. A major challenge for the biomedical engineering community is to develop diagnostic tests to meet the needs of these people, the majority of whom are in the developing world. We here review the context in which the diagnostics must operate, some of the appropriate diagnostic technologies already in distribution, and some emerging technologies that promise to address this challenge. However, there is much room for innovation, adaptation, and cost reduction be...
980 citations
TL;DR: Use of these frameworks for educating researchers to create and sustain authentic community-academic partnerships will increase accountability and equality between the partners.
Abstract: Community engagement in research may enhance a community's ability to address its own health needs and health disparities issues while ensuring that researchers understand community priorities. However, there are researchers with limited understanding of and experience with effective methods of engaging communities. Furthermore, limited guidance is available for peer-review panels on evaluating proposals for research that engages communities. The National Institutes of Health Director's Council of Public Representatives developed a community engagement framework that includes values, strategies to operationalize each value, and potential outcomes of their use, as well as a peer-review framework for evaluating research that engages communities. Use of these frameworks for educating researchers to create and sustain authentic community-academic partnerships will increase accountability and equality between the partners.
370 citations
TL;DR: It is recommended that systems medicine should be developed through an international network of systems biology and medicine centers dedicated to inter-disciplinary training and education, to help reduce the gap in healthcare between developed and developing countries.
Abstract: High-throughput technologies for DNA sequencing and for analyses of transcriptomes, proteomes and metabolomes have provided the foundations for deciphering the structure, variation and function of the human genome and relating them to health and disease states. The increased efficiency of DNA sequencing opens up the possibility of analyzing a large number of individual genomes and transcriptomes, and complete reference proteomes and metabolomes are within reach using powerful analytical techniques based on chromatography, mass spectrometry and nuclear magnetic resonance. Computational and mathematical tools have enabled the development of systems approaches for deciphering the functional and regulatory networks underlying the behavior of complex biological systems. Further conceptual and methodological developments of these tools are needed for the integration of various data types across the multiple levels of organization and time frames that are characteristic of human development, physiology and disease. Medical genomics has attempted to overcome the initial limitations of genome-wide association studies and has identified a limited number of susceptibility loci for many complex and common diseases. Iterative systems approaches are starting to provide deeper insights into the mechanisms of human diseases, and to facilitate the development of better diagnostic and prognostic biomarkers for cancer and many other diseases. Systems approaches will transform the way drugs are developed through academy-industry partnerships that will target multiple components of networks and pathways perturbed in diseases. They will enable medicine to become predictive, personalized, preventive and participatory, and, in the process, concepts and methods from Western and oriental cultures can be combined. We recommend that systems medicine should be developed through an international network of systems biology and medicine centers dedicated to inter-disciplinary training and education, to help reduce the gap in healthcare between developed and developing countries.
367 citations
Additional excerpts
...intellectual property rights [243,244]....
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TL;DR: This work describes here a framework that provides a starting point for broader discussions of community engagement in global health research, particularly as it relates to the development, evaluation and application of new technologies.
225 citations
TL;DR: An international expert group has outlined a framework for preparedness, detection, and response to future infectious-disease threats.
Abstract: The Ebola epidemic demonstrated how ill-prepared the global community is for major infectious disease crises. Now an international expert group has outlined a framework for preparedness, detection, and response to future infectious-disease threats.
222 citations
References
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01 Jan 1991
TL;DR: The main aim of the conference, as expressed in its title, is to improve drug safety through the joint efforts of all those who are partners in this very complicated but crucial task of ensuring progress in medicine.
Abstract: It is an honor and a great pleasure for me to welcome you, on behalf of the Council for International Organizations of Medical Sciences (CIOMS), to this international dialogue conference organized in the framework of the RAD-AR initiative. The main aim of the conference, as expressed in its title, is to improve drug safety through the joint efforts of all those who are partners in this very complicated but crucial task of ensuring progress in medicine. I am particularly pleased by the presence of all major constituencies responsible for drug safety, namely, representatives of the national drug regulatory authorities, drug manufacturers, and health professions, as well as scientists, journalists, and representatives of consumer organizations.
1,458 citations
01 Jan 1993
1,326 citations
TL;DR: This is a very seriously written book which is, incidentally, beautifully edited and well produced and it is essentially for educationists and community physicians who will follow the discussions with interest and benefit.
Abstract: served and the difficulty for this reviewer is to understand how this contract is to be developed. By and large, it must be through the individual to do otherwise must be, as Hamilton points out, to change the medical ethic. Several of the participants share these doubts. Dr McWhinney, for example, points out that we must not make too much of a distinction between clinical and population competency for the latter will be applied through the former. Put another way by Sir Douglas Black: 'The ideal curriculum should recognise that population problems are aggregations of individual problems'. Moreover, while doctors must know about and understand the effect of the environment, both natural and manmade, on the distribution of ill-health, the resolution of such problems is not within the power of the medical school whose essential function, as Inui puts it, is to educate physicians. How we are educating them is another matter. It may well be that the 'humanitarian dimensions' of doctoring are being sacrificed to the rote of science and it is certain that the undergraduate medical curriculum is too crowded. Perhaps we should avoid the concept of the five or sixyear undergraduate training programme and think more in terms of a ten-year graduate curriculum. In any event, the sweeping re-orientation suggested throughout the book is probably unattainable. The major difficulty is that the majority of, at least UK, hospitals are not community-based and the graduates go out to serve disparate populations not excluding those of developing countries whose needs may be completely different. The paper by Marmot and Zwi, 'A model exercise in public health', demonstrates this only too well. Several contributors come from medical schools which claim that population-based education of the type envisaged can be achieved but one suspects that Newcastle, NSW, for example, is, by reason of geography, the classic community-based medical school. In fact, the contributions from discussants are, in many ways, more readable than the primary papers insofar as they bring us back from Utopia to Camberwell. This is a very seriously written book which is, incidentally, beautifully edited and well produced. In so far as medical ethics are founded in the medical school, it has an interest for readers of this journal but it takes a long time to make a relatively narrow point. It is essentially for educationists and community physicians who will follow the discussions with interest and benefit.
1,269 citations
TL;DR: This work applies a previously proposed ethical framework for clinical research within developed countries to developing countries explicating a previously implicit requirement for collaboration and proposes specific and practical benchmarks to guide researchers and research-ethics committees in assessing how well the enumerated ethical principles have been fulfilled in particular cases.
Abstract: In recent years there has been substantial debate about the ethics of research in developing countries. In general the controversies have centered on 3 issues: first the standard of care that should be used in research in developing countries; second the “reasonable availability” of interventions that are proven to be useful during the course of research trials; and third the quality of informed consent. The persistence of controversies on such issues reflects in part the fact that existing ethical guidelines can be interpreted in multiple ways are sometimes contradictory or rely on unstated yet controversial ethical principles. To provide unified and consistent ethical guidance we apply a previously proposed ethical framework for clinical research within developed countries to developing countries explicating a previously implicit requirement for collaboration. More importantly we propose specific and practical benchmarks to guide researchers and research-ethics committees in assessing how well the enumerated ethical principles have been fulfilled in particular cases. (excerpt)
842 citations
"Grand challenges in global health :..." refers background or methods in this paper
...Multinational Clinical Research What Makes Clinical Research in Developing Countries Ethical? The Benchmarks of Ethical Research [14]...
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...The Benchmarks of Ethical Research [14] HIV Prevention Trial Network (HPTN) HPTN Approach to Ensuring Community Involvement in Research: HPTN Year One (http://www.hptn.org/ Web%20Documents/CommunityProgram/HPTNYear_One_Guidance_for_Community_Participation.pdf) doi:10.1371/journal.pmed.0040273.t002 PLoS Medicine | www.plosmedicine.org 1454 September 2007 | Volume 4 | Issue 9 | e273 on issues such as study participant recruitment and retention strategies, cultural factors that might affect the research initiative, and development of study-specifi c communication strategies in Zulu, the indigenous language of the area....
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...In the context of international research, such partnership has been proposed as an ethical requirement [14]....
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