SUPPLEMENT ARTICLE
Setting the Research Agenda in a Resource-Limited Setting—Viewpoint Margaret Z. Borok, MBChB, FRCP,* Naftali Busakhala, MBChB, MMed,† Tariro Makadzange, MD, PhD,* and James Hakim, MBChB, FRCP*
Abstract: The phenomenon of disproportionately large allocations of global health research resources to relatively limited components of the global health burden is widely acknowledged. Factors contributing to this are explored. The development of a national or regional research agenda is a critical step toward attempting to redress this imbalance. Key areas to be considered are a broad vision, dialogue, and commitment from those stakeholders comprising the “health research triangle”: national policy makers and decision makers, key personnel in both health research and health care, and community representatives. The interdependent roles of human, material, and community resources are further examined. Key Words: research agenda, stakeholders, community engagement (J Acquir Immune Defic Syndr 2014;65:S3–S4)
O
nly 10% of worldwide expenditure on health research and development is devoted to problems that affect the poorest 90% of the world’s population.1 Attributed to many factors, this has been called the “10/90 gap.” In resourcelimited settings, the factors include the following: the weak infrastructure of health delivery systems, inadequate facilities for health education in general—and tertiary facilities in particular, the sense of professional and community isolation created by inefficient (or absent) communication systems, and overwhelming poverty. It is significant that all these factors are pertinent to the consideration of the HIV/AIDS epidemic in sub-Saharan Africa. The development of a national or regional research agenda is a critical step toward attempting to redress this “10/ 90 gap.” This demands a broad vision from those stakeholders comprising the “health research triangle”: national policy makers and decision makers, key personnel in both health research and health care, and community representatives.2 In theory, the breadth of that collective vision is only likely to be achieved if the involved stakeholders become familiar From the *Department of Medicine, University of Zimbabwe College of Health Sciences, Harare, Zimbabwe; and †Department of Haematology and Oncology, Moi University School of Medicine, Eldoret, Kenya. Supported in part grants from the National Institutes of Health: R01 CA172050-01 from the National Institute of Allergy and Infectious Diseases to Drs M.Z.B. and J.H. and UM 1A I069436-02 to J.H. The authors have no conflicts of interest to disclose. Correspondence to: Margaret Z. Borok, MD, CHB, FRCP, Department of Medicine, UZ-Parirenyatwa CRS, PO Box A178, Avondale, Harare, Zimbabwe (e-mail: [email protected]). Copyright © 2013 by Lippincott Williams & Wilkins
with those wider implications of research that often determine its outcome: its local and global importance, the appropriateness of its focus, the care with which limited resources are allocated, measuring and evaluating all research, the nature of available—or potential—funding and its sources, and the power that may be exerted by donors to steer research in a direction that might be at odds with the agenda a country (or region) has decided on. In practice, the establishment of an agenda in a resource-limited country requires careful consideration of both the material and human resources available, the interaction between the policy makers and the researchers, and the communities in which research is to be conducted. The multiple issues surrounding material resources alone make the setting of an agenda a complex task. Funding invariably relies on a variety of international agencies or organizations: multilateral funders, private philanthropic organizations, and newer multistakeholder institutions (such as the Global Fund to Fight AIDS, Tuberculosis and Malaria or the Global Alliance for Vaccines and Immunisation Alliance, and others). The latter will have an impact on the process of agenda setting by governments because of differences in their methods of governance from those of traditional funding agencies (such as the World Health Organization). For example, their mandates may be narrow and problem focused, and their route of funding—based on voluntary contributions—different from the traditional in-country route followed by multilateral agencies. Any resultant changes in the structure of funding are likely to have a further impact if short-term goals are favored over the long-term goals, oriented toward public health, that are generally preferred by governments.3 The balance between different types of funders is critical and must involve decisions on the part of the recipient based on shrewd judgment. To ensure long-term sustainability of research projects and their resultant benefits, it is mandatory to have the ongoing support of policy makers. Research in health in a particular country should ideally be driven by an agenda that stems from those personnel who are pivotal in the process of influencing and shaping policy decisions; this requires a long-term vision and good interaction between well-informed, well-educated research personnel and those who implement national policies and programs. So this process hinges on growing the community of health researchers as much as it does on fostering the consultative process between supporters of health research and those whose role is to formulate evidence-based policies and implement the results of appropriately focused research.
J Acquir Immune Defic Syndr Volume 65, Supplement 1, January 1, 2014
www.jaids.com |
S3
Borok et al
J Acquir Immune Defic Syndr Volume 65, Supplement 1, January 1, 2014
TABLE 1. Key Elements for Successful Agenda Setting Coordinated vision of researchers and health care personnel and policy makers with ongoing support from the latter to ensure sustainability Seeking appropriate and sustainable funding Balanced workforce and infrastructure development Community engagement at every level
This process was undertaken in Zimbabwe in 2008 by the National AIDS Council in response to a regional call for the development of an evidence-based research agenda to investigate the HIV epidemic. In each of 4 broad areas (prevention, treatment and care, mitigation and support, and systems policies), the research priorities were evaluated and categorized as follows: “fully covered/partially covered/large knowledge gap exists.” Priorities were ranked to clarify and direct implementation of the survey. The recommendations were reviewed and updated in 2010.4 It illustrated how close collaboration and regular dialogue between academic researchers and national policy makers is critical both to the success of implementing operational research and to interpreting its findings. The success of such interactions is dependent on a careful evaluation and deployment of the human resources of a country. Local factors to be considered include the following: establishment of a strong research base, the provision of accurate disease statistics to highlight areas of most need, the performance of needs assessments, fundamental to identify relevant gaps that need to be filled.5 Apropos the latter, any assessment process should incorporate recommendations for holistic capacity building of both human and institutional resources; this avoids both imbalance and the risk of fruitless investment where human resources are inadequate to use funded infrastructure development (or vice versa). The tendency for “needs assessment” to become an end in itself must be avoided. Although local expertise should be sought and harnessed at every opportunity, it is important to recognize the “brain drain” phenomenon, which can operate negatively. In attempts to counter that it may be necessary to offer educational and financial incentives. It is also important to foster an environment conducive to job satisfaction. This should further enhance sustainability of the research agenda. Despite the critical importance of dialogue between scientists and institutions to identify areas of priority and thus bring maximum impact from conducted research, no research agenda will be complete—or efficacious—until the role of the community has been evaluated and incorporated. This aspect is often neglected. Community engagement at several levels is vital. It includes consultation in the planning process, mobilizing the community, community education, individual compliance in research studies, and advocating for local communities to take action and initiate change. An example of how engage-
S4
| www.jaids.com
ment with the community can be beneficial to research is a case study from Zimbabwe (described by The Council on Health Research for Development initiative in “Communities Matter”) in which an education group, rooted in the community, was able to educate its disparate members, identify issues for action in different HIV issues, and engage with policy makers.2 In contrast to this was the realization that there was underutilization of breast cancer screening programs in Kenya. The reason for this transpired to be a combination of poor education in the community on the possibility of early diagnosis, and the commonly held belief that surgery for breast cancer was invariably fatal. A well-planned public health educational campaign would, in all likelihood, have resolved this misconception (Busakhala N, personal communication, 2013). This example highlights how oral—as opposed to written—dissemination of information in a low-resource setting is an often overlooked phenomenon; it is a likely mechanism by which common myths about HIV and other health issues are perpetuated. Recognition of this phenomenon is an obligation of research practice that may be neglected. There are instances when research of excellent quality may only be of marginal relevance to the people that it is intended to benefit. This “disconnect” between “excellence” and “relevance” is a critical one.6 Focus group discussions between representatives of all groups, encompassing central policy makers, academics, and “remote providers” of services in the community may be a way of narrowing this gap. Any new research should build on existing frameworks and community infrastructure; any development arising from research ought then to be more easily sustainable within a health system. Good relationships between researchers and communities also have the potential to encourage grassroots workers to “take ownership” of the research and later implement it in their communities. The voice of the larger community should never be ignored. REFERENCES 1. Kilama W. The 10/90 gap in sub-Saharan Africa: resolving inequities in health research. Acta Trop. 2009;112S:S8–S15. 2. Batista R, Berger M, Devlin M, et al; Council on Health Research for Development. Can communities influence national health research agendas? A learning process leading to a framework for community engagement in shaping health research policy. 2006. Available at: http://www.cohred.org/downloads/968.pdf. Accessed July 2013. 3. Sridhar D. Who sets the global health research agenda? The challenge of multi-bi financing. PLoS Med. 2012;9:e1001312. 4. National AIDS Council 2010 of Zimbabwe, eds. HIV and AIDS Research Priorities for Zimbabwe 2010-2012. Harare, Zimbabwe: National AIDS Council; 2010. 5. Kilama W. From research to control: translating research findings into health policies, operational guidelines and health products. Acta Trop. 2009;112S:S91–S101. 6. Tol WA, Patel V, Tomlinson M, et al. Relevance or excellence? Setting research priorities for mental health and psychosocial support in humanitarian settings. Harv Rev Psychiatry. 2012;20:25–36.
Ó 2013 Lippincott Williams & Wilkins
Setting the Research Agenda in a Resource-Limited Setting—Viewpoint Margaret Z. Borok, MBChB, FRCP,* Naftali Busakhala, MBChB, MMed,† Tariro Makadzange, MD, PhD,* and James Hakim, MBChB, FRCP*
Abstract: The phenomenon of disproportionately large allocations of global health research resources to relatively limited components of the global health burden is widely acknowledged. Factors contributing to this are explored. The development of a national or regional research agenda is a critical step toward attempting to redress this imbalance. Key areas to be considered are a broad vision, dialogue, and commitment from those stakeholders comprising the “health research triangle”: national policy makers and decision makers, key personnel in both health research and health care, and community representatives. The interdependent roles of human, material, and community resources are further examined. Key Words: research agenda, stakeholders, community engagement (J Acquir Immune Defic Syndr 2014;65:S3–S4)
O
nly 10% of worldwide expenditure on health research and development is devoted to problems that affect the poorest 90% of the world’s population.1 Attributed to many factors, this has been called the “10/90 gap.” In resourcelimited settings, the factors include the following: the weak infrastructure of health delivery systems, inadequate facilities for health education in general—and tertiary facilities in particular, the sense of professional and community isolation created by inefficient (or absent) communication systems, and overwhelming poverty. It is significant that all these factors are pertinent to the consideration of the HIV/AIDS epidemic in sub-Saharan Africa. The development of a national or regional research agenda is a critical step toward attempting to redress this “10/ 90 gap.” This demands a broad vision from those stakeholders comprising the “health research triangle”: national policy makers and decision makers, key personnel in both health research and health care, and community representatives.2 In theory, the breadth of that collective vision is only likely to be achieved if the involved stakeholders become familiar From the *Department of Medicine, University of Zimbabwe College of Health Sciences, Harare, Zimbabwe; and †Department of Haematology and Oncology, Moi University School of Medicine, Eldoret, Kenya. Supported in part grants from the National Institutes of Health: R01 CA172050-01 from the National Institute of Allergy and Infectious Diseases to Drs M.Z.B. and J.H. and UM 1A I069436-02 to J.H. The authors have no conflicts of interest to disclose. Correspondence to: Margaret Z. Borok, MD, CHB, FRCP, Department of Medicine, UZ-Parirenyatwa CRS, PO Box A178, Avondale, Harare, Zimbabwe (e-mail: [email protected]). Copyright © 2013 by Lippincott Williams & Wilkins
with those wider implications of research that often determine its outcome: its local and global importance, the appropriateness of its focus, the care with which limited resources are allocated, measuring and evaluating all research, the nature of available—or potential—funding and its sources, and the power that may be exerted by donors to steer research in a direction that might be at odds with the agenda a country (or region) has decided on. In practice, the establishment of an agenda in a resource-limited country requires careful consideration of both the material and human resources available, the interaction between the policy makers and the researchers, and the communities in which research is to be conducted. The multiple issues surrounding material resources alone make the setting of an agenda a complex task. Funding invariably relies on a variety of international agencies or organizations: multilateral funders, private philanthropic organizations, and newer multistakeholder institutions (such as the Global Fund to Fight AIDS, Tuberculosis and Malaria or the Global Alliance for Vaccines and Immunisation Alliance, and others). The latter will have an impact on the process of agenda setting by governments because of differences in their methods of governance from those of traditional funding agencies (such as the World Health Organization). For example, their mandates may be narrow and problem focused, and their route of funding—based on voluntary contributions—different from the traditional in-country route followed by multilateral agencies. Any resultant changes in the structure of funding are likely to have a further impact if short-term goals are favored over the long-term goals, oriented toward public health, that are generally preferred by governments.3 The balance between different types of funders is critical and must involve decisions on the part of the recipient based on shrewd judgment. To ensure long-term sustainability of research projects and their resultant benefits, it is mandatory to have the ongoing support of policy makers. Research in health in a particular country should ideally be driven by an agenda that stems from those personnel who are pivotal in the process of influencing and shaping policy decisions; this requires a long-term vision and good interaction between well-informed, well-educated research personnel and those who implement national policies and programs. So this process hinges on growing the community of health researchers as much as it does on fostering the consultative process between supporters of health research and those whose role is to formulate evidence-based policies and implement the results of appropriately focused research.
J Acquir Immune Defic Syndr Volume 65, Supplement 1, January 1, 2014
www.jaids.com |
S3
Borok et al
J Acquir Immune Defic Syndr Volume 65, Supplement 1, January 1, 2014
TABLE 1. Key Elements for Successful Agenda Setting Coordinated vision of researchers and health care personnel and policy makers with ongoing support from the latter to ensure sustainability Seeking appropriate and sustainable funding Balanced workforce and infrastructure development Community engagement at every level
This process was undertaken in Zimbabwe in 2008 by the National AIDS Council in response to a regional call for the development of an evidence-based research agenda to investigate the HIV epidemic. In each of 4 broad areas (prevention, treatment and care, mitigation and support, and systems policies), the research priorities were evaluated and categorized as follows: “fully covered/partially covered/large knowledge gap exists.” Priorities were ranked to clarify and direct implementation of the survey. The recommendations were reviewed and updated in 2010.4 It illustrated how close collaboration and regular dialogue between academic researchers and national policy makers is critical both to the success of implementing operational research and to interpreting its findings. The success of such interactions is dependent on a careful evaluation and deployment of the human resources of a country. Local factors to be considered include the following: establishment of a strong research base, the provision of accurate disease statistics to highlight areas of most need, the performance of needs assessments, fundamental to identify relevant gaps that need to be filled.5 Apropos the latter, any assessment process should incorporate recommendations for holistic capacity building of both human and institutional resources; this avoids both imbalance and the risk of fruitless investment where human resources are inadequate to use funded infrastructure development (or vice versa). The tendency for “needs assessment” to become an end in itself must be avoided. Although local expertise should be sought and harnessed at every opportunity, it is important to recognize the “brain drain” phenomenon, which can operate negatively. In attempts to counter that it may be necessary to offer educational and financial incentives. It is also important to foster an environment conducive to job satisfaction. This should further enhance sustainability of the research agenda. Despite the critical importance of dialogue between scientists and institutions to identify areas of priority and thus bring maximum impact from conducted research, no research agenda will be complete—or efficacious—until the role of the community has been evaluated and incorporated. This aspect is often neglected. Community engagement at several levels is vital. It includes consultation in the planning process, mobilizing the community, community education, individual compliance in research studies, and advocating for local communities to take action and initiate change. An example of how engage-
S4
| www.jaids.com
ment with the community can be beneficial to research is a case study from Zimbabwe (described by The Council on Health Research for Development initiative in “Communities Matter”) in which an education group, rooted in the community, was able to educate its disparate members, identify issues for action in different HIV issues, and engage with policy makers.2 In contrast to this was the realization that there was underutilization of breast cancer screening programs in Kenya. The reason for this transpired to be a combination of poor education in the community on the possibility of early diagnosis, and the commonly held belief that surgery for breast cancer was invariably fatal. A well-planned public health educational campaign would, in all likelihood, have resolved this misconception (Busakhala N, personal communication, 2013). This example highlights how oral—as opposed to written—dissemination of information in a low-resource setting is an often overlooked phenomenon; it is a likely mechanism by which common myths about HIV and other health issues are perpetuated. Recognition of this phenomenon is an obligation of research practice that may be neglected. There are instances when research of excellent quality may only be of marginal relevance to the people that it is intended to benefit. This “disconnect” between “excellence” and “relevance” is a critical one.6 Focus group discussions between representatives of all groups, encompassing central policy makers, academics, and “remote providers” of services in the community may be a way of narrowing this gap. Any new research should build on existing frameworks and community infrastructure; any development arising from research ought then to be more easily sustainable within a health system. Good relationships between researchers and communities also have the potential to encourage grassroots workers to “take ownership” of the research and later implement it in their communities. The voice of the larger community should never be ignored. REFERENCES 1. Kilama W. The 10/90 gap in sub-Saharan Africa: resolving inequities in health research. Acta Trop. 2009;112S:S8–S15. 2. Batista R, Berger M, Devlin M, et al; Council on Health Research for Development. Can communities influence national health research agendas? A learning process leading to a framework for community engagement in shaping health research policy. 2006. Available at: http://www.cohred.org/downloads/968.pdf. Accessed July 2013. 3. Sridhar D. Who sets the global health research agenda? The challenge of multi-bi financing. PLoS Med. 2012;9:e1001312. 4. National AIDS Council 2010 of Zimbabwe, eds. HIV and AIDS Research Priorities for Zimbabwe 2010-2012. Harare, Zimbabwe: National AIDS Council; 2010. 5. Kilama W. From research to control: translating research findings into health policies, operational guidelines and health products. Acta Trop. 2009;112S:S91–S101. 6. Tol WA, Patel V, Tomlinson M, et al. Relevance or excellence? Setting research priorities for mental health and psychosocial support in humanitarian settings. Harv Rev Psychiatry. 2012;20:25–36.
Ó 2013 Lippincott Williams & Wilkins
