Background: The Ending the HIV Epidemic initiative in the United States relies on HIV hotspots to identify where to geographically target new resources, expertise, and technology. However, interventions targeted at places with high HIV transmission and infection risk, not just places with high HIV incidence, may be more effective at reducing HIV incidence and achieving health equity.
Objective: We described the implementation and validation of a web-based activity space survey on HIV risk behaviors. The survey was intended to collect geographic information that will be used to map risk behavior hotspots as well as the geography of sexual networks in Los Angeles County.
Methods: The survey design team developed a series of geospatial questions that follow a 3-level structure that becomes more geographically precise as participants move through the levels. The survey was validated through 9 cognitive interviews and iteratively updated based on participant feedback until the saturation of topics and technical issues was reached.
Results: In total, 4 themes were identified through the cognitive interviews: functionality of geospatial questions, representation and accessibility, privacy, and length and understanding of the survey. The ease of use for the geospatial questions was critical as many participants were not familiar with mapping software. The inclusion of well-known places, landmarks, and road networks was critical for ease of use. The addition of a Google Maps interface, which was familiar to many participants, aided in collecting accurate and precise location information. The geospatial questions increased the length of the survey and warranted the inclusion of features to simplify it and speed it up. Using nicknames to refer to previously entered geographic locations limited the number of geospatial questions that appeared in the survey and reduced the time taken to complete it. The long-standing relationship between participants and the research team improved comfort to disclose sensitive geographic information related to drug use and sex. Participants in the cognitive interviews highlighted how trust and inclusive and validating language in the survey alleviated concerns related to privacy and representation.
Conclusions: This study provides promising results regarding the feasibility of using a web-based mapping survey to collect sensitive location information relevant to ending the HIV epidemic. Data collection at several geographic levels will allow for insights into spatial recall of behaviors as well as future sensitivity analysis of the spatial scale of hotspots and network characteristics. This design also promotes the privacy and comfort of participants who provide location information for sensitive topics. Key considerations for implementing this type of survey include trust from participants, community partners, or research teams to overcome concerns related to privacy and comfort. The implementation of similar surveys should consider local characteristics and knowledge when crafting the geospatial components.
Keywords: HIV; activity space; cognitive interviews; health interventions; mobile phone; networks; risk hotspots; sexual network geography; survey design.
©Sean C Reid, Vania Wang, Ryan D Assaf, Sofia Kaloper, Alan T Murray, Steven Shoptaw, Pamina Gorbach, Susan Cassels. Originally published in JMIR Formative Research (https://formative.jmir.org), 22.06.2023.