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AIDS:
doi: 10.1097/01.aids.0000390090.68306.8a
Article

Essential elements of strategic information systems to guide focused HIV responses in south and south-east Asia

Azim, Tasnima; Saidel, Tobi Jb; Brown, Timc

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Author Information

aHIV/AIDS Programme, Laboratory Sciences Division, International Centre for Diarrhoeal Disease Research, Bangladesh (ICDDR,B), Dhaka, Bangladesh

bPartnership for Epidemic Analysis, New Delhi, India

cEast-West Center, Honolulu, Hawaii, USA.

Correspondence to Tasnim Azim, HIV/AIDS Programme, Laboratory Sciences Division, International Centre for Diarrhoeal Disease Research, Bangladesh (ICDDR,B), Mohakhali, Dhaka 1212, Bangladesh. E-mail: tasnim@icddrb.org

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Abstract

Strategic information is fundamental to the formulation and delivery of effective HIV programmes, but generating that information is a complex process, for which most countries in south and south-east Asia lack capacity and supporting structures. Although most countries in this region have made tremendous strides in collecting relevant data, advances in the ability to translate that data into strategic information and evidence for action, have not kept pace. To overcome these shortcomings, this paper presents a comprehensive approach to collecting strategic information and building the capacity to use it effectively, which is based on experience in the successful use of data in different countries in south and south-east Asia. The system recommended here requires that staff and resources carry out four major functions: implement an early alert and response system allowing for the timely collection, synthesis and use of information to respond quickly to emerging epidemics; carefully analyze data to develop policy scenarios and resource projections to guide decision-making; periodically evaluate the impact of the current response and make recommendations to improve it; and engage policy-makers in ways that proactively promote improvements to current programmes based on evidence. At present, countries in this region are carrying out these functions in an ad-hoc and uncoordinated manner, if at all. The establishment and resourcing of structures dedicated to fulfilling these functions in an organized and coordinated manner are required to counteract the formidable barriers and challenges that inhibit the use of Asia's wealth of data for maximum benefit.

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Introduction

Reliable data and strategic information are central to the formulation and delivery of effective HIV intervention programmes. Locally relevant information provides a basis to identify populations at risk, prioritize actions, plan for adequate coverage, determine the costs of effective programmes, monitor their progress and evaluate their success. Nowhere is the relevance of this information more apparent than in south and south-east Asia, where countries at different stages of the epidemic have used and acted on local evidence. Thailand and Bangladesh are two examples of countries, which responded to local information to rapidly reverse, in the case of the former, and effectively contain, in the case of the latter, their respective epidemics. Sex work and injecting drug use were identified early in these two countries as the major contributors to their national epidemics and both established national epidemiological and behavioural surveillance systems [1,2]. Both responded by scaling prevention programmes for those populations to national level, and both used surveillance data to monitor and evaluate those programmes [3–6]. They made further use of that data to develop models and policy analyses that helped to guide their responses and demonstrate their impact to policymakers and funders [7,8]. However, although Thailand was effective in containing transmission through sex work, critical gaps in information and political will allowed continued rapid HIV spread in injecting drug users (IDUs) [9] and men who have sex with men (MSM) [10].

Substantial geographic variability has characterized epidemics within countries in south and south-east Asia. In Thailand, while prevention efforts focused aggressively in the heavily HIV-affected upper North, they were weaker in the seaside province of Rayong, which reported equally high prevalence among pregnant women in the early 1990s [11]. Similarly, in India existing harm reduction services in cities with established HIV epidemics among IDUs were prioritized, despite new emerging epidemics in other cities [12]. These examples demonstrate that no country can afford to neglect any population or geographical area that may be at substantial risk. They further reinforce that no single source of information is adequate to provide a comprehensive picture of the epidemic and programme needs in a country. Although ‘know your epidemic, know your response’ [13] is gradually gaining popularity, few appreciate the many dimensions of strategic information required and the need to develop and sustain structures that make it possible to ‘know’ your epidemic and the responses to it.

Multiple sources of information from diverse populations and geographic areas must be compiled, analyzed and interpreted to respond effectively. Although epidemiological and behavioural data remain at the core of constructing the dynamics of an epidemic and focusing prevention efforts in the right places, equally important is garnering accurate information on the responses to the epidemic and the major structural barriers inhibiting those responses. Systems for collecting such information are weak. The problem is not just the inadequacy of the data systems themselves, but also significant institutional barriers, resource limitations and capacity gaps that make it difficult to pull this information together, synthesize it into a coherent picture of the epidemic that will provide a basis for costing and directing responses, and translating that picture into resource mobilization and action. This paper discusses the key elements of strategic information systems for Asian epidemics and the types of structures needed to generate evidence and ensure that it is used to systematically guide prevention, treatment and impact mitigation.

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Essential steps in gathering and using strategic information

A comprehensive strategic information strategy needs to include four essential steps, which are briefly summarized here:

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Generate data relevant to assessing the epidemic and the responses to it

Data needs will vary according to the stage of the epidemic, but in general some key questions will need to be answered which include: which populations are most at risk of an epidemic; how big are the overall populations vulnerable to and affected by HIV; where is HIV prevalence currently high and where is it emerging; what behaviour changes are occurring and what is the impact on the epidemic; what programmes are being implemented, who are they targeting, and how effective are they; what are the costs of prevention, treatment and impact mitigation; what is the current capacity for effective programmes and what are the capacity building needs; what are the barriers to prevention, care and impact mitigation programmes?

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Identify and collate data from various sources

Many diverse forms of data are needed to answer these questions from surveillance systems; mapping of most-at-risk populations for size estimation [14]; programme monitoring data, service reports or records; ad-hoc surveys; research studies; informal discussions with field personnel and local level officials; and data on costs and resources.

Data must be collated and used in policy analyses if they are to influence responses. However, these data are usually widely dispersed and no one organization or individual has ready access to all data. This creates a need to proactively extract data from these different sources, a time and personnel intensive activity.

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Assure the quality of data used in the analysis

Because strategic information is intended to guide national responses, the data used must be of reasonable quality, representative of the overall national situation, and adjusted for any serious biases. For this a four-pronged approach is suggested:

1. Quality assurance. Where a component of the strategic information system itself collects the data, it is essential that quality is assured at all levels of data collection and that both internal and external quality systems are in place [15,16].

2. Careful data review and quality assessment. When data is coming from sources external to the strategic information system, it should be reviewed carefully in light of the methodology used, the capacity of the organization collecting the data, and biases that may be present.

3. Triangulation and consistency checks. Triangulation of data from multiple sources provides an important means of validating findings [17].

4. Adjustment for known biases and data limitations. When using data collected in limited geographical areas, from small segments of at-risk populations, in nonrepresentative sampling sites, to develop a nationally representative picture, adjustments are required to compensate. For example, HIV prevalence data in antenatal clinics requires adjustment for fertility pattern, age and urban/rural differentials in access for estimating prevalence in the general female population [18].

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Synthesize and use the data to guide programmes and policies

The general purposes of a strategic information system in an Asian context and the associated data products are summarized in Table 1 [19–25]. Generation of these products requires triangulating and synthesizing the various types of data from the multiple sources outlined earlier. The evidence generated through this process needs to be proactively used to promote and support advocacy for action. Actions are required at different levels and by multiple stakeholders at national, provincial/state and district levels and must target multiple audiences.

Table 1
Table 1
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Because programmes for HIV address sexual and drug using behaviours, the social, legal and policy environments can create major structural barriers to their implementation [26]. It is critical to take concrete steps to address these barriers when planning programmes.

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Institutionalizing strategic information structures

The goal of a strategic information system is to guide countries to implement responses with maximal impact.

For a single organization to support the generation and use of strategic information, the following four core functions with dedicated staff will be needed:

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Early alert and response function

Two functions are combined here: epidemiological, behavioural and response data collection, and timely synthesis and use of data at both local and national levels to quickly identify and respond to emerging epidemics. Thus, the functions would include conducting traditional epidemiological and behavioural surveillance, and systematically collecting data on responses: programme coverage, effectiveness, and the resources expended on them. Where major data gaps remain, it might gather data from intervention programmes, passive case reporting, and research and ad-hoc studies.

Both local (provincial/state) and national components are needed, with local units ensuring the data they collect informs local responses and the national unit collating and synthesizing subnational information. The national level would generate regular reports on surveillance and overall programme coverage and effectiveness, and actively feed synthesized information back to subnational levels and to those conducting more in-depth policy analysis at the national level. Training and clear and simple guidelines must be provided to the local level team and they should not be overburdened.

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Estimations, projections and policy analysis function

Staff here would be responsible for carefully analyzing data to produce estimates and projections, gathering data on unit costs and conducting cost-benefit and cost-effectiveness analyses, and using synthesized data on the coverage, effectiveness and costs of programmes to prepare policy scenarios and resource projections. Given the more complex skills set required, this would function at the national level and draw on epidemiologists, behavioural scientists, health economists and statisticians or mathematicians.

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Impact and capacity evaluation function

Staff here would review the overall effectiveness of the current national response, assess the capacity to respond, analyze the effect of barriers on responses, and make recommendations about responses. They might also periodically conduct field reviews of large scale and provincial programmes to assess their impacts, identify their constraints and limitations, and suggest strategies for improvement. Staff would need to have good knowledge of programmes on the ground and affected communities, ability to evaluate prevention, treatment and impact mitigation programmes, and access to legal expertise.

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Data dissemination, policy and planning support function

Staff here would actively engage with policy processes, key decision-makers, and affected communities by using data and analyses conducted to proactively promote improvements to current programmes and recommend new programmes and policies to fill identified gaps.

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The current realities of strategic information

In most south and south-east Asian countries, strategic information ‘systems’ have not been carefully designed to fulfil these functions. Instead, they have tended to grow organically with different functions carried out in different organizations or departments, some conducted on a sporadic and ad-hoc basis, and some not done at all. There are only a handful of countries in this region that have extensively used data for national planning and Thailand is presented here as a country case study.

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Thailand case study: an early evidence driven response

Data collection and synthesis for planning. Following ad-hoc HIV testing among sex workers, IDUs and MSM in the mid-to-late 1980s [9], the epidemiology division of the Thai Ministry of Public Health (MOPH) conducted serological surveillance in 14 provinces in mid-1989. After finding HIV in every site, the system was extended to all provinces by 1990 [27]. In the mid-1990s, a national behavioural surveillance system in 24 provinces was added, with emphasis on both local use of the data and on sending the data to Bangkok for national reporting purposes [28]. The epidemiology division routinely relayed information to the media and to key policymakers.

The surveillance system documented trends in many key populations groups, except MSM. Although limited surveillance on male sex workers in four provinces showed prevalence at 10–15% from the early 1990s, national prevention efforts only expanded to actively include MSM after research in the early 2000s in Bangkok highlighted extremely high HIV prevalence [10].

Ad-hoc and large-scale behavioural surveys [29] and in-depth research studies were conducted by Thailand's universities in collaboration with others. Findings from these gave impetus to national policies, for example the 100% condom programme, and results were utilized in mobilizing funds and showing the impact of programmes.

Estimation, projection and policy analysis. Thailand undertook a series of ad-hoc efforts on modelling and policy analysis when national strategies were being considered, starting in 1990 and continuing at 5-year intervals aligned with national planning cycles [7,30,31]. These were conducted by ad-hoc coalitions of researchers and national health experts organized by the National Economic and Social Development Board in 1994, and the MOPH in 2000 and 2004. Models were developed showing the impact of responses and providing support for sustaining prevention efforts, [7] highlighting the need for expanding programmes for MSM, IDUs, husband-to-wife transmission and prevention of mother-to-child transmission. At various points where Thailand was considering new national policy initiatives, specific analytic studies were undertaken to explore their impacts and consequences. Examples included use of models to explore the impacts of short-course zidovudine for reducing mother-to-child transmission [7] and studies of the cost and treatment implications of expanding to universal antiretroviral care [30].

The failure of the prevention response to adapt to an evolving epidemic and recognition that more active evidence-based advocacy was necessary, led Thailand to join the Analysis and Advocacy (A2) project, a multinational trial of expanding use of data to inform policies and programmes [22]. Since 2006, a separate and dedicated analysis unit (the A2 team) continues to work independently with strong data/policy analysis and modelling capacity and links with the MOPH and national planning processes.

Impact and capacity evaluation. The response evaluation function in Thailand was built into the programme, data collection, synthesis and policy analysis efforts. The surveillance system was used to monitor the overall effectiveness and impacts of the response. Monitoring data on condom use levels and from local sexually transmitted infection (STI) units were used to monitor programme effectiveness and impact. These were further validated by research efforts, such as the cohorts among military recruits, which showed major reductions in visits to sex workers and increasing condom use [32]. The national modelling and analysis efforts referred to earlier regularly reviewed the national effects of both past and future responses.

Data dissemination, policy planning and support. Data on both HIV prevalence and risk behaviours was widely disseminated by the epidemiology division of the MOPH and various university researchers. Most of the ad-hoc analysis efforts outlined earlier were timed to feed into national planning processes, and as a consequence helped in formulating national directions [7,33–35].

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Other examples of comprehensive data use from the region

Although most countries routinely collect and report surveillance data, it remains relatively rare for them to utilize that data in more comprehensive ways. However, some examples do exist.

In Bangladesh, both HIV prevention programmes among most-at-risk populations and second generation surveillance systems were initiated in mid-to-late 1990s, before HIV was documented at high levels in any population group [2,36]. The serological surveillance identified an emerging epidemic among IDUs in Dhaka [37] and predicted an increase in prevalence rates based on behavioural data [38]. The information was widely disseminated to policy makers as well as implementers [39]. However, to better understand why the epidemic was slow to take off, more research and data analysis was undertaken. Programme monitoring data were used to model the effect of the needle/syringe program (NSP) among IDUs in Dhaka, which showed that the NSP was successful in substantially delaying the epidemic [6]. A research study undertaken among a cohort of IDUs in Dhaka revealed that the HIV epidemic was localized to one neighbourhood in Dhaka [40], which was then declared as a ‘hot spot’ and in response the NSP in this neighbourhood was intensified to contain the epidemic [41]. HIV incidence among the IDUs in the cohort remained low throughout the study period from 2003–2007 and the incidence of hepatitis C declined from 37.50 in 2003 to 11.58 per 100 person years in 2007 [42], further supporting the reported success of the ongoing NSP. HIV prevention programmes for most-at-risk populations are being scaled up in Bangladesh and selection of sites for programme implementation is based on national assessments of sizes and vulnerabilities of those populations [43,44].

In Ho Chi Minh City, the Provincial AIDS Committee working with international partners undertook the A2 process to identify more effective ways of targeting prevention responses for impact. They evaluated four prevention alternatives with roughly the same cost with increased focus and coverage of: female sex workers and clients, MSM, IDUs and all three groups in comparison to the less targeted approach of the national plan [45] (Fig. 1). This process found the combination approach prevented 16 000 more infections than the less focused national approach between 2005 and 2010. As a consequence, resources were reprogrammed and additional funds mobilized. Between 2005 and 2007, the budget for focused prevention among at-risk populations rose from 1.4 billion VND to 21.9 billion VND.

Fig. 1
Fig. 1
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Avahan, a large-scale prevention initiative in India focusing primarily on most-at-risk populations, performed significant ‘know-your epidemic’ research before implementation to ensure likelihood of maximum impact [46]. The programme collected a large amount of information (i.e. mapping and size estimation, programme monitoring, and behavioural, biological, and cost data), and used these data in several triangulation and modelling approaches to explore the evidence that observed declines in HIV prevalence in selected districts resulting from the large scale-up of their programme, and also to insure that they were targeting the most vulnerable members of the most-at-risk populations [47,48]. Avahan plans to do more such analyses as new data become available [49].

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Discussion

Recognizing the value of strategic use of information to focus responses, the Commission on AIDS in Asia made a strong recommendation to ‘establish a policy and programme analysis unit to make maximum use of available data to guide, monitor and evaluate responses’ [50]. The strongest strategic information unit of this type would carry out all four functions under a single roof with adequate staffing and resources. However, at present these functions, when they are carried out, are done by different institutions and consolidating them presents formidable organizational and political barriers. The Thailand example illustrates the ad-hoc nature of current strategic information systems and some of their limitations. Yet it also shows that a great deal can be accomplished with systems pieced together under different agencies. In many countries then, a more realistic approach for building the requisite capacity may be to strengthen the components, which already exist, identify and resource organizations that can host the ones that are missing, and ensure these components function together to improve responses. Each country will need to find a strategic information structure appropriate to its own situation. A number of recommendations for establishing a suitable structure are presented here:

1. Strengthen existing surveillance units to take on additional data collection responsibilities. Most countries in south and south-east Asia already have a functioning surveillance unit. The responsibilities of this unit may be expanded to include collection and synthesis of other forms of data from various sources, and making these reports and findings readily available to others. Additional staff will be needed for this.

2. Establish a separate, well staffed modelling and policy analysis unit. This unit is essential to identifying programmes that will have the greatest impact on the epidemic and assessing their costs. Dedicated staff with skills and adequate time to analyze data and construct policy models will be required irrespective of where this unit is located.

3. Establish a data dissemination, policy and planning support unit. These staff will need the skills to stay linked to national policy processes and convince key stakeholders to adopt effective programmes. This may require hiring of people already strongly linked to national processes, or establishing steering committees that have these connections, supported by staff with experience in policy or legislative processes.

4. Create a regular and periodic process of evaluating the response. Periodic, inclusive evaluations of national responses are needed. Ideally this process needs to be accomplished under the leadership of a strong national figure, working closely with the surveillance team and the modelling and policy analysis unit.

5. Advocate with national funders and donors to mobilize resources for these units. Governments and donors, including the Global Fund for AIDS, tuberculosis and malaria, USAID, World Bank, the Gates Foundation and many others, are investing heavily on HIV in every Asian country. For the best return on their investment, they also need to invest in supporting and strengthening the strategic information systems outlined here. These systems may consume 5–10% of the resources, but will increase the efficiency of their investment, create stronger national responses, and substantially reduce downstream impacts of the epidemic.

6. Encourage international and regional agencies to develop simpler tools for modelling and policy analysis and train national staff in their use. Although substantial progress has been made by the World Bank AIDS Strategy and Action Plan project [51], the A2 project [22], and United Nations Partners, existing policy analysis tools are often difficult to use. International and regional agencies must accelerate their efforts to simplify these tools and provide accessible training to national staff so that countries can instantiate and sustain this capacity locally.

If these units are located in separate organizations or agencies, strong central management will be required to ensure collaboration, which may require expansion of national programme management staff.

The system outlined is a guide and each country will need to decide on its own set up. However, it is important to keep in mind that a dedicated and stable group of technical experts working together is likely to be more effective at influencing national directions than past efforts have allowed for. Given the reality in many south and south-east Asian countries, moving to a coordinated system of this type will take time. However, reliable, evidence-based guidance is required urgently and where coordinated systems cannot immediately be set up, at least national focal points or centres of excellence can be developed and a network of regional resources fostered so that systems can be developed for the longer term both within and across countries.

Every year over $10 billion USD is being spent on AIDS globally. The global AIDS community will be asked to demonstrate results. Using information strategically to select the most effective responses, and provide the highest quality care, will demonstrate the impact of this investment. Asia, with its focused epidemics, offers the greatest chance of demonstrating a real return on prevention and treatment investments, but we must have strong strategic information systems to make it happen and then prove it.

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Acknowledgements

This paper is an outcome of the ‘First Asia Regional Training on Costed National Strategic Plans’, 15–26 September 2008, Bangkok and the recommendations of the AIDS commission report. The ideas contained herein on strategic information systems result from the contributions of innumerable colleagues whose work through the years has contributed to our thinking in this field. ICDDR, B gratefully acknowledges the following donors which provide unrestricted support: Government of the People's Republic of Bangladesh, Canadian International Development Agency (CIDA), Embassy of the Kingdom of the Netherlands (EKN), Swedish International Development Cooperation Agency (Sida), and the Department for International Development, UK (DFID).

Tasnim Azim, Tobi J. Saidel and Tim Brown all conceptualized and together wrote the paper.

Conflicts of interest: None.

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Keywords:

Asia; data; HIV; modelling; policy; strategic information; surveillance

© 2010 Lippincott Williams & Wilkins, Inc.

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