Turning research into action: New challenges in the fight against HIV
We know a good deal about HIV in South Africa, but are we using and sharing this knowledge effectively?
Where are we now?
The atmosphere was upbeat at the South African AIDS Conference in Durban this year, and with good reason. Recent data on HIV in South Africa indicate the undeniable success of the National Strategic Plan and reflect a phase of strong leadership in the battle against the HIV/AIDS epidemic. There are good reasons to be positive: over two million people are now on antiretroviral therapy (ART), mother-to-child transmission has been reduced from 15% to less than 3%, and median life expectancy has increased sharply. Although some people claim these positive indicators may be overly optimistic or biased, the achievements are impressive and have led us into a new phase of controlling and managing the HIV epidemic in our country. But successes bring new challenges, such as how to retain patients in the increasing number of long-term ART cohort studies and how to manage complex comorbidities. The goal of eliminating mother-to-child transmission of HIV may be even more difficult to achieve than the progress made so far. New controversies also need to be debated, such as which treatment protocols (Option B or B+) to adopt in treatment guidelines for the prevention of mother-to-child transmission (PMTCT). Crucially, the successes of the ART scale-up and of the scale-up of PMTCT have depended on a combination of a reliable supply of medicines and the efficient use of human resources. Distressingly frequent reports of drug shortages in most provinces, however, and instances of the reversal of nurse-initiated and managed antiretroviral treatment (NIMART) practices suggests that the progress is vulnerable. These are signs that the achievements of the NSP remain fragile and that the sustainability of the NSP is not assured. We have failed to gain control of HIV prevention in South Africa. While the sexual transmission of HIV is beginning to decline, the infection rate in our country remains among the highest in the world and incidence rates of HIV in young women are also still alarmingly high. Further gaps remain in the support provided to key population groups, such as migrants, men who have sex with men, and drug users. South Africa’s response to the HIV epidemic is at an important threshold. We know a lot now about the HIV epidemic and the NSP in South Africa. But are the data, knowledge and insights generated so far sufficient to monitor and evaluate the NSP, or to address the challenges facing our responses to the HIV epidemic in South Africa? And are our monitoring and evaluation (M&E) efforts adequate or fit for purpose?
How can we know our epidemic better?
UNAIDS has called on nations to “know your epidemic”. While South Africa has fulfilled the basic requirements of doing so, a meaningful M&E strategy for the NSP needs to push beyond the boundaries of our current knowledge. This requires making sense of a wider range of available data and information, and building a more sophisticated process for identifying and selecting sources of knowledge about HIV and the NSP. This will help to create a more complex picture of South Africa’s evolving and diverse circumstances. What we already know about HIV and health in South Africa is based on a wide variety of sources which have helped us to understand the HIV epidemic better and to develop better responses to it. These sources have included: routine data provided by the health services (for example, which groups of people are receiving ART), data from specific surveillance efforts (such as the prevalence of HIV among pregnant women at surveillance sites), data from scientific studies (such as life expectancy levels recorded at demographic surveillance sites), data on mortality from death registrations, and data from civil society actors (for example, levels of medicine stock-outs and staff absenteeism). Information typically comes from formal sources (usually documented) and informal sources (often verbal). It may take the form of clear and explicit knowledge, or the information may be implicit or tacit. Each of these forms of data is valuable but may have weaknesses. Some may be more or less reliable or biased, or may be seen as more or less representative. In instances in which no reliable information is available, some evidence may simply be anecdotal. Other forms of management information, such as details about the supply and dispensing of ART medicines, are collected but rarely collated. Access to particular types of information, such as audits on budgets and human resources, may be restricted. When data are examined, interpretations may also depend on the perspectives of the researchers. The accessibility of data, the importance given to particular kinds of data, and researcher perceptions of knowledge gaps and uncertainties may also affect interpretation. With the inputs available to us, we have applied a scientific framework of interpretation to build on our knowledge of the HIV epidemic and the state of the NSP’s implementation. Comparing, contrasting and verifying information using this approach have helped us to clarify the certainties and uncertainties about information related to the epidemic. This has aided debates about both HIV and the NSP. By examining and interpreting the data within specific contexts, we have gained insight into the reality of HIV in South Africa and the future of the epidemic. As our understanding has deepened, we have also begun to ask more questions. This is because the process of enquiry never ends: each study or report raises new questions. Often these require more investigation, more information, and further studies. Academics, when asked for definitive answers often claim that “more research is needed”. But does research and investigation lead to more decisive and better action? Or does it lead us to a state of information overload – to “paralysis by analysis”?
Do we really know enough?
HIV, especially in South Africa, has been studied extensively. However, there are still important frontiers of science to be explored in relation to the epidemic. It is important to recognise that the quantity of available information is so large that no single person can possibly review it all. The information and insights which are already available continue to help us to improve the implementation of the NSP and its adaptation. What is critical now is that we share and discuss our interpretations of the state of the NSP. We must utilise relevant information and data from all available sources, including routine M&E, civil society information, feedback from frontline providers and managers, information from academics, and from research sites – even if this information is incomplete, preliminary, partial and/or potentially biased. To identify priority areas for action, we will need to analyse, interpret and compare data (even in instances when the findings are imperfect). Sound field knowledge and participatory processes will help us to interpret and compare information and epidemic trends. In this way, we will be able to compare, for example, information at the provincial, district and clinic level. Doing so will help us to identify areas of agreement and disagreement, as well as data weaknesses and other areas of concern. Multi-stakeholder efforts will need to be transparent. Success will depend on gaining access to existing information, even when such information is deemed sensitive. The aim of these efforts should not be to accuse or scapegoat individuals or institutions. Instead, they should promote rapid learning, the sharing of good practices, the rapid identification of problems, and the implementation of swift corrective action. The learning processes inherent in programme rollouts and scaling-up will, of course, continue as further challenges reveal themselves. [box]
M&E activities in South Africa need to embrace and reflect the inclusive vision of the NSP. To understand fully the current phase of the HIV epidemic and to ensure that our responses are appropriate, we will require M&E systems that evolve, respond and adapt. It is also important that we involve multiple stakeholders: this will ensure the integration of different kinds of information, interpretations and perspectives into M&E processes. Members of the government, the academic community, civil society, health workers, health managers, and policymakers are among those who have an important role to play. Responses to this phase of the HIV epidemic require the sharing of data and information and depend on more open dialogue and discussion. Doing this will build shared knowledge, better accountability, and more effective action. [/box]By Wim van Damme and Helen Schneider Helen Schneider is the Director of the School of Public Health at the University of the Western Cape and Wim van Damme is the SARChI Professor in Health Systems, Complexity and Social Change at the School of Public Health at the University of the Western Cape and Professor of Public Health at the Antwerp Institute of Tropical Medicine.