Methodology

Visualizing and measuring stigma is essential to Ending the HIV Epidemic in the United States and around the world, as stigma experienced in both social and healthcare-related settings can deter individuals from seeking and staying engaged in HIV prevention and treatment services. Without quantifying these experiences, critical barriers to HIV service engagement will remain unmeasured and without response. Through the visualization of the experience and impacts of stigma, this dashboard aims to bridge gaps facilitating the implementation and evaluation of evidence-based stigma mitigation strategies in HIV treatment and prevention.

StigmaScope has been developed in response to stakeholder feedback including health departments, community-based organizations, and affected communities. Phase 1 included the development of the Data Incubator: Stigma, which served as a visualization of stigma-related data among gay, bisexual, and other men who have sex with men in three states: Georgia, New York, and Maryland. Phase 2, the focus of the current site, includes the visualization of experiences of stigma and the HIV care cascade in two different modules on the StigmaScope site. Module 1 – Explore, visualizes key stigma metrics and factors that contribute to multiple forms of stigma affected communities. Module 2 – Analyze, visualizes key HIV service indicators, stigma, and related variables such as social support, and knowledge of care. Phase 3 of StigmaScope will include the development of an interactive systems dynamics model that visualizes the relationship between stigma and HIV service indicators. With Phase 3 of StigmaScope, users will be able to simulate the effects of different levels of stigma including the potential effect of stigma mitigation interventions on HIV service indicators.

Module 1 of StigmaScope introduces key stigma-related indicators through interactive national and state-level visualizations. Module 1 encompasses a national map displaying three types of stigma: general social stigma, anticipated health care stigma, and stigma from family and friends, as well as state-specific pages with additional indicators of structural stigma. Definitions for each indicator are provided below.

Data definitions

Map:

• General social stigma
  • Items which refer to experiences of exclusion, discrimination, or rejection from friends and/or family (Augustinavicius et al., 2020)
• Anticipated healthcare stigma
  • Items which refer to fear of or negative experiences in health-care services that may lead to avoidance of care services (Augustinavicius et al., 2020)
• Stigma from family and friends
  • Items which refer to experiences of negative treatment or violence from police or others, including physical and sexual violence (Augustinavicius et al., 2020)

State-specific pages:

• HIV criminalization legislation
  • Laws that criminalize the transmission of, or perceived exposure to HIV and other infectious diseases (Movement Advancement Project | HIV Criminalization Laws.)
• Hate crime legislation
  • Legislation which creates additional or enhanced penalties for crimes committed with bias toward particular characteristics, such as race, religion, disability, sexual orientation, or gender identity. (Movement Advancement Project | Hate Crime Laws.)

Module 2 of StigmaScope presents trends in the following six indicators over time:

• the number of:
  • Men who have sex with men (MSM) prescribed PrEP
  • New HIV diagnoses among MSM
  • MSM receiving HIV care, not yet virally suppressed
  • New infections among MSM
  • MSM lost to HIV care
  • Virally suppressed MSM

In the next phase of the dashboard, a systems dynamics model will be developed to simulate how these variables change over time. The model will use existing data as both input and calibration criteria to establish a baseline and will be used to simulate the potential impact of stigma-related intervention scenarios.

American Men’s Internet Survey (AMIS)

Source Description: a cross-sectional, annual online survey occurring annually since 2013, led by Emory University in partnership with Johns Hopkins University. AMIS aims to capture the demographics, sexual behavior, HIV and STI testing and diagnosis history, PrEP knowledge, interest, and use, use of HIV prevention services, and experiences of stigma of gay, bisexual, and other men who have sex with men (GBMSM) in the United States.

• Module 1 – Data Visualizations:
  • National Heatmap: The proportion of AMIS participants who have experienced stigma from family and friends, and in general and social settings in each state.
    • States shaded grey did not meet the threshold of at least 30 respondents to the item in a survey year, from 2017 – 2022
    • State-level stigma scores represent the proportion of AMIS participants reporting experiences of stigma across 1) family and friends’ stigma, 2) anticipated stigma in healthcare, and 3) general social stigma. For stigma-related questions in AMIS, responses of “yes, in the last 6 months” or “yes, but not in the last 6 months” are coded as evidence of experiencing stigma. Missing responses are imputed using the mean within each of the three stigma domains. Scores are then aggregated at the state level to show the percentage of participants reporting stigma.
  • State Profile Pages: The proportion of AMIS participants who responded yes to individual items which make up the overall stigma scales, (e.g. experiencing stigma from family and friends, and in general and social setting) are displayed.
• Module 2 – Data Visualizations:
  • Show the proportion of participants reporting “yes” to individual socio-behavioral variables, including various forms of stigma, knowledge of care navigation, degree of outness, and risk behaviors.
    • Proportions are standardized across time to allow for trend visualization and comparison across states

Movement Advancement Project (MAP)

Source Description: Collated data from MAP’s HIV Criminalization and Hate Crime legislation pages

• Data Visualization:
  • State Profile Pages: shows whether the state has HIV Criminalization laws and if the state requires hate crime data to be collected, along with hate crimes committed per year since 2021

Centers for Disease Control and Prevention (CDC) HIV Surveillance Reports

Source Description: Data compiled annually from multiple national reporting systems, including:

• • National HIV Surveillance System – case-based surveillance
  • IQVIA Real World Data–Longitudinal Prescriptions database – prescription data repositories
  • Medical Monitoring Project – national surveys

• Data Visualization:
  • HIV Service Indicator Graphs: Present trends over time for key HIV prevention and care indicators among MSM, derived from CDC surveillance data. These include HIV testing, linkage to care, retention in care, ART use, and viral suppression.
    • Where MSM-specific values are not directly reported by CDC, derived estimates are used based on clearly defined formulas detailed in the accompanying variable table (under Data Definitions)

Data definitions

The table below shows the specific data variables, their definitions, and sources. Given that the next phase of the dashboard will incorporate these data variables as part of the system dynamics model, the data is categorized by the type of variable it is defined as in the model.

Citations

Augustinavicius, J. L., Baral, S. D., Murray, S. M., Jackman, K., Xue, Q.-L., Sanchez, T. H., Nowak, R. G., Crowell, T. A., Zlotorzynska, M., Olawore, O., Lyons, C. E., Njindam, I. M., Tamoufe, U., Diouf, D., Drame, F., Kouanda, S., Kouame, A., Charurat, M. E., Anato, S., … Kane, J. C. (2020). Characterizing Cross-Culturally Relevant Metrics of Stigma Among Men Who Have Sex With Men Across 8 Sub-Saharan African Countries and the United States. American Journal of Epidemiology, 189(7), 690–697. https://doi.org/10.1093/aje/kwz270

Movement Advancement Project | Hate Crime Laws. Retrieved September 16, 2025, from https://www.lgbtmap.org/home

Movement Advancement Project | HIV Criminalization Laws. Retrieved September 16, 2025, from https://www.lgbtmap.org/equality-maps/hiv_criminalization_laws