To achieve meaningful public health impact, the response to HIV among young women and adolescent girls must be based on sound epidemiological analysis, utilizing existing data sources. There is broad consensus that programmes must prioritize high-burden geographical locations, define and target the demographic segments at greatest risk and most underrepresented in key data sources, and predict the likely impact of chosen interventions.
The HIV prevention response has faced shrinking resources. Given increasingly scarce resources for prevention, efficiency of resource use is now paramount. In practical terms, this must translate into prioritizing the most highly affected populations to achieve the goal of HIV prevention coverage for 90 per cent of at-risk populations, including vulnerable young people.
To effectively align efforts, programmes must also invest in the analysis required for strategic target-setting. The global commitment to reduce new HIV infections by 75 per cent from 2010 for young women and adolescent girls will require more dramatic course correction by certain countries, depending on the magnitude of their epidemic and the baseline HIV landscape. Performance targets should be model-driven with a transparent timeline, and must factor in the whole response across the continuum of HIV treatment services and prevention programming.
The global prevention response has, for a long time, been plagued by weaknesses in measurement and estimation of the key programmatic results. Strengthening routine data and reporting systems remains a critical obstacle to identifying gaps in the prevention programme. This should be paired with investment in quality evaluation and evidence generation to recalibrate decision-making for prevention services and systems. Evaluations are only worth doing if done well, but they need not be extensive or costly.
This module presents recommended methodologies, tools and approaches to collect and analyse epidemiological data for informing decision-making, strengthening targeted programming, optimizing programmes and maximizing efficiency. The content is intended to equip programme mana
- The next frontier in prevention for young women and girls requires hyper-granular epidemiological data at the subnational level to inform tactical decision-making.
- All programme partners must advocate for strategic target-setting using mathematical modelling methods and based on a powerful theory of change.
- National programmes require robust data systems with integrated reporting — linked across sectors and across community and health facility services — to identify programmatic gaps and support rapid evidence-based decision-making.
- Programmes should leverage ongoing research and evaluation platforms to efficiently achieve desired results and to hold programme implementers accountable .
Promising Directions Adaptive evaluation designs. These offer an alternative to traditional observational studies or randomized controlled trials, both of which require a fixed design throughout the investigation. Novel adaptive designs allow modifications during a study and/or statistical procedures without undermining the study’s validity and integrity, making studies more flexible, efficient and fast. Adaptive multi-arm multi-cluster designs have been successfully deployed to assess the impact of a single intervention deployed alone or in combination as part of an HIV care and prevention package (as in Malawi5 and South Africa in 2019) in a complex sequence of care.
Digital and big data Harnessing digital data (including Internet searches, social media and online media) and data science is emerging as a promising approach to complement traditional surveillance, research and evaluation in public health. Potential applications are wide and vast: social media analytics have been used to refine estimates of key populations and other marginalized groups to assess subgroups requiring enhanced prevention or treatment focus. Social media platforms (such as WhatsApp) have been utilized to conduct focus groups and surveys (Facebook bots), and video, social media analysis and sensors could be deployed to collect behavioural data.
Empirically derived risk analysis In certain settings, empirically derived tools have already been developed to help identify young women and adolescent girls at heightened risk of acquiring HIV. These tools are often brief questionnaires (5–10 questions), with items informed by rigorous empiric research linking specific behaviours or characteristics to increased HIV vulnerability. Girls can be given a score based on how they answer each question. Higher scores typically denote heightened vulnerability to HIV. The Baseline Behaviour Assessment6 by CAPRISA (see 'Centre for the AIDS Programme of Research in South Africa (CAPRISA) Behaviour and Risk Assessment') and methods used in the VOICE trial7 (see 'An Empiric HIV Risk Scoring Tool to Predict HIV-1 Acquisition in African Women') offer a few validated approaches to predict HIV vulnerability.
Joint United Nations Programme on HIV/AIDS (UNAIDS); English
UNAIDS leads the collection of the world’s most extensive data on HIV epidemiology, programme coverage and finance; it also publishes the most authoritative and up-to-date information on the HIV epidemic. UNAIDS works with all countries to collect and analyse data on their AIDS responses and to help build the capacity to generate and use strategic information. Data from UNAIDS have been trusted and used by countries and organizations around the world to guide and monitor their responses to HIV since UNAIDS was formed in 1996.
UNESCO; English, French
The UNESCO Institute for Statistics is the official and trusted source of internationally comparable data on education, science, culture and communication. It produces a wide range of indicators in UNESCO’s fields of action by working with national statistical offices, line ministries and other statistical organizations. Themes: Education; Sustainable Development Goal 4 (SDG4); Science, Technology and Innovation; Culture; Communication and Information; Demographic and Socio-economic.
UNICEF; English, French, Spanish, Arabic, Russian, Chinese
MICS is the largest source of statistically sound and internationally comparable data on women and children worldwide. In countries as diverse as Costa Rica, Mali and Qatar, trained fieldwork teams conduct face-to-face interviews on a variety of topics, focusing mainly on issues that directly affect the lives of children and women. MICS was a major source of data on the Millennium Development Goals indicators and will continue to be a major data source during the 2030 Sustainable Development Agenda to measure SDGs indicators
ICAP at Columbia University, US Centers for Disease Control, PEPFAR; English
The PHIA Project measures the reach and impact of HIV programmes in PEPFAR-supported countries through national surveys. For each PHIA survey, trained staff conduct household-based HIV counselling and testing, and the results of tests are returned. The surveys also ask questions about adults’ and children’s access to preventive care and treatment services. The results measure national and regional progress towards the UNAIDS 90-90-90 goals and guide policy and funding priorities. The website provides a dashboard with information on ongoing PHIA surveys. Final reports with datasets are available on the website from Eswatini, Malawi, Zambia and Zimbabwe. Summary reports are available (at the time of writing) from other implementing countries (Cameroon, Côte d’Ivoire, Ethiopia, Haiti, Kenya, Lesotho, Namibia, Rwanda, Tanzania, Uganda and Zambia), and timelines show when each country is anticipated to complete its report.
US Centers for Disease Control and Prevention (CDC); English, Spanish
VACSs are led by the CDC as part of the Together for Girls partnership. They comprise nationally representative household surveys of males and females aged 13–24 years. VACSs measure the prevalence of sexual, physical and emotional violence in childhood, adolescence and young adulthood, its incidence in the past 12 months and the circumstances surrounding it. The surveys also identify risk factors, protective factors and consequences of violence. VACSs’ results are published in national reports used in the development of national action plans and guide effective evidence-based programmes and policies.
United Nations Secretariat; English
The 2019 Revisions of World Population Prospects is the twenty-sixth round of ofcial United Nations population estimates and projections prepared by the Population Division of the Department of Economic and Social Affairs of the United Nations Secretariat. The main results are presented in a series of Excel les displaying key demographic indicators for each United Nations development group, World Bank income group, geographic region, SDGs region, subregion and country or area for selected periods or dates between 1950 and 2100.
ICF International; more than 200 languages, including English, French, Spanish
The DHS Program provides technical assistance for more than 400 surveys in over 90 countries, advancing global understanding of health and population trends in developing countries. The DHS Program has a worldwide reputation for collecting and disseminating accurate, nationally representative data on fertility, family planning, maternal and child health, gender, HIV, malaria and nutrition.
The AIDS Indicator Survey is a DHS survey developed as a standardized tool to provide countries with indicators for effective monitoring of national HIV programmes.
The DHS StatCompiler allows users to make tables based on thousands of demographic and health indicators across more than 90 countries. Tables can be customized to show indicators by background characteristics, over time and across countries.
The World Bank Group; 2016; English
This video [no video on page above; Diana Chamrad to discuss] presents the programmatic mapping approach as a tool to improve the efficiency and effectiveness of health service delivery. The approach underscores the importance of understanding the local context and consequently enabling the delivery of the right interventions, for the right people/populations, at the right time, and in the right locations. Programmatic mapping provides critical information that helps policymakers, programme planners and implementers understand the local context — providing information on the location, size, typologies and operational dynamics of the target population — which allows them to effectively focus and tailor the services provided.
Cori, Anne, et al., PLoS One, vol. 9, p. e84511; 2014; English
A model was developed to assist the development of the PopART cluster-randomized trial. PopART aims to test whether a combination prevention package including universal testing and treatment may reduce HIV incidence. The model was used to describe the generalized HIV epidemics in South Africa and Zambia.
Goodreau, Steven M., et al., PLoS One, vol. 7, p. e50522; 2012; English
This article proposes a conceptual framework for understanding the drivers of epidemics and modelling the potential effect of HIV interventions for MSM — people who played a key role in the global HIV epidemic. The model estimates the proportions of transmissions occurring in main versus casual partnerships, and by the sexual role, infection stage and testing and treatment history of the infected partner, for MSM in the United States and Peru.
Awad, S. F., et al., PLoS One, vol. 10, p. e0145729; 2015; English
The purpose of the age-structured mathematical model is to inform a new VMMC strategy focused on optimizing impact while minimizing costs by targeting specic subpopulations. The approach utilizes mathematical modelling and a three-tiered conceptual framework to assess the epidemiologic and cost–benet implications of different VMMC policy scenarios. The model describes the heterosexual transmission of HIV in a given population by stratifying the population according to sex, circumcision status, age group, sexual risk group, HIV status and stage of infection.
Actuarial Society of South Africa; 2011; English
These AIDS models were developed to estimate the impact of antiretroviral treatment in recent years as well as that of significant increases in levels in condom usage over the last decade. The latest version of the model was released in 2011.
Bärnighausen, Till, David E. Bloom & Salal Humair; Harvard School of Public Health, University of Kwazulu-Natal, Lahore University of Management Sciences; 2012; English
The Bärnighausen, Bloom, Humair model estimates the impact of ART programme dynamics on HIV prevalence and incidence. The model is a discrete-time mathematical model with yearly increments and two main population classes: men and women aged 15 and older. Each population class is divided into pools representing people without HIV infection and people with HIV infection differentiated by the number of years since HIV acquisition. The years since HIV acquisition model the decline in CD4 count over time; for example, 5 years after infection, an untreated person’s CD4 count falls below 350/μl, and 8 (9) years after infection, an untreated man’s (woman’s) CD4 count falls below 200/μl. Each pool of men/women is further subdivided into those not receiving antiretroviral therapy (ART) and those receiving ART.
UNAIDS; 2012; English
The Modes of Transmission spreadsheet helps users calculate the expected number of new infections per year within a population based on the current distribution of infections and patterns of risk within that population. These data help identify who is at risk of HIV infection and the risk behaviours that may facilitate overall HIV transmission. The accompanying EPI-MOT tool helps to assess the availability and quality of the epidemiological and behavioural data that are needed for the MOT modelling.
Avenir Health; English, French, Portuguese, Arabic, Russian
Spectrum is a suite of user-friendly policy models providing policymakers, planners and programme teams with analytical tools to project future needs and examine the effects of policy options. To access and operate any single model, users must download the entire Spectrum suite. The models include: DemProj (population projection), FamPlan (family planning), LiST (lives saved), AIM (AIDS impact), GOALS (funding related to goals), Resource Needs Model (Costs of implementing an HIV/AIDS programme), RAPID (resources for the awareness of population impacts on development), Safe Motherhood and Allocate. AIM and GOALS are described further below.
pp. 89–183: https://avenirhealth.org/Download/Spectrum/Manuals/SpectrumManualE.pdf
AIM projects consequences of the HIV epidemic, including numbers of people living with HIV, new infections, AIDS deaths by age and gender, and new tuberculosis cases and orphans. UNAIDS uses AIM to make national and regional estimates, released every 2 years. Module 2 includes the GOALS model showing how the amount and allocation of funding is related to the achievement of national goals; and the Resource Needs model that estimates the costs of implementing an HIV and AIDS program.
pp. 366–394: https://avenirhealth.org/Download/Spectrum/Manuals/SpectrumManualE.pdf
The GOALS simulation model can be used to plan HIV prevention and treatment programmes. The model simulates the spread of HIV in a national population and estimates the impact of scaling up various prevention and treatment programmes on the trend in new HIV infections, AIDS deaths and costs. The model can be used to examine alternate strategies to nd those that are the most effective and cost-effective in different epidemic settings. The GOALS model supports strategic planning at the national level by linking programme goals and funding, and can help answer the following key questions: How much funding is required to achieve the goals of the strategic plan? What goals can be achieved with the available resources? What is the effect of alternate patterns of resource allocation on the achievement of programme goals?
GOALS Express is a subset of the full GOALS model. It can be used to interactively scale up prevention and treatment in four epidemic settings: hyper-endemic epidemics, generalized epidemics, concentrated epidemics and injection drug-driven epidemics.
UNAIDS; 2019; English, French, Spanish, Russian
This guidance document provides updated indicators for monitoring the goals outlined in the 2016 United Nations Political Declaration on Ending AIDS. More tools are available through an online portal to help navigate the indicator-monitoring process, including tutorials on registration and managing the account.
University of Oslo; multiple languages, including English, French and Spanish
https://www.dhis2.org/individual-data-records http://www.dhispb.com http://www.dhiskp.gov.pk
DHIS2 is an open source web-based HMIS platform. DHIS2 is the world’s largest HMIS platform, in use by 67 low and middle-income countries. DHIS2 incorporates aggregated and event-specific data, and incorporates user friendly analytics through tailored dashboards, charts, pivot tables, and maps to support reporting, analysis and dissemination of data. DHIS2 combines statistical data collection, validation, analysis, management and presentation. DHIS2 can be used to monitor patients’ health, improve disease surveillance, map disease outbreaks, and speed up access to health data for health facilities and government organizations.
MEASURE Evaluation; 2018; English
MEASURE Evaluation, which is funded by USAID, provided technical and financial assistance to strengthen RHISs for more than 15 years. One of the project’s mandates was to strengthen the collection, analysis and use of these data for the delivery of high-quality health services.
MEASURE Evaluation; 2018; English
The Health Information System (HIS) Strengthening Resource Center is a learning space for health professionals, decision- makers and information technology professionals, in which to access resources, search for HIS assessment tools, and learn how HIS strengthening is contributing to stronger health systems.
The Global Fund to Fight AIDS, Tuberculosis and Malaria; 2018; English
This framework is aligned to the Global Fund’s modular framework, which details programmatic modules for HIV, TB and malaria, coupled to a corresponding list of indicators (including those for adolescent girls and young women) upon which countries build their funding requests. As part of the accountability framework, the countries are required to include these indicators with respective targets in their performance frameworks based on planned activities for adolescent girls and young women.
The Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM); 2017; Language: English
These Excel sheets provide indicators for outcome and impact, and coverage and output results. The indicators include those for adolescent girls and young women, among many other populations. Outcomes and impacts require periodic review every 1 to 3 years for GFATM-supported programming. Impact and outcome assessments should be based on all available information, including impact and outcome indicators as well as programme reviews/evaluations and other assessments/studies. The findings from these assessments inform future strategy, reprogramming and investments, including investments to strengthen the measurement of disease burden and data collection, analysis and reporting. Coverage and output indicators should be assessed every 6–12 months. In 12 high-prevalence epidemic countries of eastern and southern Africa, plus Cameroon, data disintegration by age group 15–19 and 20–24 years is required.
Measure Evaluation; 2013; English
The Referral Systems Assessment and Monitoring Toolkit was developed for HIV and AIDS, but can be adapted for wider use. It provides programme managers with assessment templates to conduct the in-depth analyses needed to determine whether existing referral systems and their mechanisms are functioning as intended. It also explains how to generate routine data based on the frequency and completion of referrals across sectors. The toolkit provides a series of practical tools, which may be adapted as needed. It also provides clear step-by- step instructions to assist managers when deciding which referral system component to implement, how to adapt and use tools for data collection, and how to analyse, interpret and use the generated information.
FHI 360; 2016; English
This guidance document helps governments, partners and other key stakeholders to understand how to develop Unique Identier Codes (UICs) for people accessing HIV services. A UIC is any set of numbers or letters, an alphanumeric combination, or any unique identier such as a ngerprint or other biomarker that can be used to identify a specic individual. UICs maintain personal privacy while facilitating close individual tracking throughout service provision. This resource provides further information on UICs: types, generation, assignment and record linking; ethical considerations for UIC development and use; and technical considerations for UIC development use. The guidance was designed for the Linkages programme addressing HIV in key populations, but can also adapted for use with other vulnerable populations, such as adolescent girls and young women.
UNAIDS; 2015; English
These operational guidelines describe in detail how to use the indicator assessment tool. The tool assesses the extent to which indicators intended for use in the HIV response meet a set of internationally agreed standards. These operational guidelines, the indicator assessment tool and the standards were all produced by the UNAIDS Monitoring and Evaluation Reference Group.
Adolescent Girls Initiative (AGI); 2013; English
This resource guide provides the protocols and concept notes used by AGI in different evaluation strategies using various methodologies. There are also quantitative resources (indicators and individual and household surveys) and qualitative resources (reports and focus group discussion instruments) that have been used in AGI evaluation projects. AGI pilots include a strong evaluation component to assess each project’s overall success in achieving its intended outcomes.
Blanluet, Noreen; Co-production Network for Wales; 2019; English, Welsh
Measuring What Matters connects an up-to-date curated list of data-collection methods (each linked to reliable and respected organizations, published guidance and resources) with a simple set of questions, making sure that implementers find the right way to collect data and measure impact when evaluating activities.
Better Evaluation; 2014; expanded version: English, Portuguese; compact version: English, Portuguese, Spanish, French, Arabic, German
The Rainbow Framework organizes the many different monitoring and evaluation methods and processes by the tasks that are often undertaken. Tasks include managing an evaluation or evaluation system, defining what will be evaluated, framing the boundaries for an evaluation, describing activities, outcomes, impacts and context, understanding the causes of outcomes and impacts, synthesizing data from one or more evaluations, and reporting and supporting use of findings. The Rainbow Framework helps users plan a monitoring and evaluation activity by prompting them to think about each of these tasks in turn and select a combination of methods and processes (called options) that cover all tasks involved. Alternatively, users may choose an approach – a pre-packaged combination of options. There are two downloadable versions of the Rainbow Framework: one only shows the tasks, and one also includes all the options (methods and processes).
Austrian, Karen, et al., BMC Public Health, vol. 16, p. 210; 2016; English
AGI-K was a randomized trial designed to test whether different single-sector combinations of 2-year interventions can improve the well- being of adolescent girls (aged 11–14 years) after 4 years (when aged 15–18 years) by delaying childbearing. The four sector-specic interventions for AGI-K were based on the Asset Building Theory of Change and included violence prevention, education, health and wealth creation. The violence prevention intervention used community conversations and planning focused on enhancing the value of girls in the community. The educational intervention included a cash transfer to the household that was conditional on school enrolment and attendance. The health intervention was culturally relevant, age-appropriate sexual and reproductive health education delivered in a group setting once a week over 2 years. Lastly, the wealth creation intervention provided savings and nancial education, as well as start-up savings.
London School of Hygiene & Tropical Medicine; 2018; English
The London School of Hygiene & Tropical Medicine (LSHTM) is leading a portfolio of evaluation studies to track the impact of DREAMS in Kenya, South Africa and Zimbabwe. The evaluation draws on LSHTM’s expertise in HIV, adolescent health and evaluation across all faculties, and close research partnerships with experienced institutes in each country, namely: the Africa Health Research Institute in Durban, South Africa, the African Population and Health Research Centre (APHRC) in Nairobi, Kenya; the Kenya Medical Research Institute in Siaya, Kenya; and the Centre for Sexual Health HIV and AIDS Research in Harare, Zimbabwe.
Reynolds, Zahra, Bheki Mamba & Ireen Hakasenke; Measure Evaluation; 2017; English
This study was designed to identify risk behaviours of girls and young men aged 20–34 years in Swaziland. These data will be used in activities as part of the DREAMS (Determined, Resilient, Empowered, AIDS-free, Mentored, and Safe) initiative of PEPFAR to focus HIV testing services and linkage to care or other high-impact interventions more precisely on male partners. Specifically, the study was designed to characterize male sexual partners of adolescent girls, describe sexual partnerships among adolescent girls and their partners, profile health-seeking behaviours of male partners and identify places where adolescent girls and young men socialize and meet new sexual partners in the areas identified as priorities by DREAMS.
Population Council; 2015–2018; English
Population Council researchers lead the implementation science component of the DREAMS initiative — assessing different aspects of the various approaches being used to reduce HIV infections among adolescent girls and young women — to determine what works and what does not in applying prevention science for girls. This research provides new evidence and guide programme models that DREAMS partners need to: (1) reach adolescent girls and young women and their sexual partners at high risk of HIV infection; (2) link them and their partners with essential resources; (3) develop the most effective evidence-based policies and programmes to improve girls’ lives and their supportive environment. This evidence may be used to strengthen DREAMS and related community-based programming and policies for adolescent girls and young women.
Population Council; 2016; English
The early teens have tended to be a neglected cohort regarding health and welfare, because they are assumed to be relatively healthy and well. Recognizing how important the early years of adolescence are for both girls and boys in forming norms, values, identity and behaviours as they enter puberty, this tool identifies research approaches, existing data sources and data tools to expand the knowledge base on young adolescents. It also addresses sensitivities and ethical challenges that arise in relation to research in this young age group, including the particularly sensitive areas of sexual and reproductive health and sexual violence. Approaches include techniques such as mapping, programme-coverage exercises and other practical tools, and take a gender perspective.
CAPRISA, University of Kwazulu-Natal; 2016–2021; English
CAPRISA developed a baseline behaviour and HIV risk perception assessment as part of an ongoing prospective observational cohort study to assess HIV risk factors and prevention choices in young women in KwaZulu-Natal, South Africa. Participants are assessed monthly for the first 3 months, and quarterly thereafter.
Balkus, Jennifer E., et al., Journal of Acquired Immune Deciency Syndromes, vol. 72, pp. 333–343; 2016; English
VOICE risk score: This score includes variables for age, marital/cohabiting status, partner provides financial support, partner has other partners, any curable sexually transmitted infection (STI) at baseline and HSV-2 status. Risk score for HPTN 035 (A) and FEM-PrEP (B): HIV incidence and 95 per cent confidence intervals by risk score for HPTN 035, excluding variable for any curable STI at baseline and HSV-2 status (A).
Strive Channel, Measurement and Surveillance of HIV Epidemics (MeSH) Consortium; 2018; English
The HIV Prevention Cascade framework teaches implementers how to use everything that is known about the virus for more effective prevention efforts. The infographic in this video explains how the Prevention Cascade works, using the example of pre-exposure prophylaxis (PrEP) as a direct prevention mechanism for the population of vulnerable adolescent girls and young women in sub-Saharan Africa. For each stage of the cascade, the infographic identifies key interventions, platforms and policies while considering biomedical, behavioural and structural aspects.
UNAIDS; 2019; English
NCPI is the most comprehensive standardized questionnaire available to assess the policy, strategy, legal and programme implementation environment for the HIV response. NCPI data can be accessed through this tool. The importance of the NCPI lies in the process of data collection and data reconciliation between different stakeholders, detailed analysis of the responses, and its use in strengthening the national HIV response. The NCPI process provides a unique opportunity for the variety of stakeholders to take stock of progress made and to discuss what still needs to be done to support an effective and efcient HIV response. When completed in a truly collaborative manner, inviting appropriate representation and respecting different views, the NCPI process can play an important role in strengthening in-country collaboration and increasing shared ownership of the HIV response.