Leveraging Technology to Blend Large-Scale Epidemiologic Surveillance With Social and Behavioral Science Methods: Successes, Challenges, and Lessons Learned Implementing the UNITE Longitudinal Cohort Study of HIV Risk Factors Among Sexual Minority Men in the United States

Abstract

The use of digital technologies to conduct large-scale research with limited interaction (i.e., no in-person contact) and objective endpoints (i.e., biological testing) have significant potential for the field of epidemiology, but limited research to date has been published on the successes and challenges of such approaches. We analyzed data from a cohort study of sexual minority men across the United States (US). collected using digital strategies during a 10-month period from 2017 to 2018. Overall, 113,874 individuals were screened, of whom 26,000 were invited to the study, 10,691 joined the study, and 7,957 completed all enrollment steps, including return of a human immunodeficiency virus (HIV)-negative sample. We examined group differences in completion of the steps towards enrollment to inform future research and found significant differences by several factors, including age and race. This study adds to prior work to provide further proof-of-concept for this limited interaction, technology-mediated methodology, highlighting some of its strengths and challenges, including rapid access to more diverse populations but also potential for bias due to differential enrollment. This method has strong promise and future implementation research is needed to better understand the roles of burden, privacy, access, and compensation, to enhance representativeness and generalizability of the data generated.

Digital Epidemiologic Research on Multilevel Risks for HIV Acquisition and Other Health Outcomes Among Transgender Women in Eastern and Southern United States: Protocol for an Online Cohort

“…Study findings will have important implications for identification of optimal recruitment, retention, and data collection methods for future observational research and digital or hybridized digital clinical trials among transgender women living with and without HIV infection, estimation of HIV incidence, and ultimately the development of acceptable HIV prevention strategies for ending the HIV epidemic among transgender women in the United States. As with other online cohorts and cross-sectional studies [37,39,75], we noted a recruitment-enrollment cascade from screening through enrollment and completion of study activities, which has important design, budgetary, and logistical implications for future digital epidemiologic studies and clinical trials. This online cohort is strengthened by extensive formative research and early experiences incorporating technology-enhanced methods into the site-based cohorts [22,23,47,48].…”

“…With this person-time, we estimated that we would have sufficient power (80%) power to detect public health relevant differences in HIV incidence by various participant characteristics. Relative to other online cohorts [37,39] and as one of the first cohorts among transgender women in the United States, we intentionally kept the sample size small to focus on developing acceptable methods and establishing trust among study participants.…”

“…Technology is increasingly integrated into HIV research through sampling and recruitment methods via online advertisements on social media and dating apps as well as electronic peer referral methods [26,27]; electronic and remote data collection [28][29][30]; and remote specimen collection for biologic measures [31][32][33]. These tools have permitted enrollment of large samples of participants for behavioral surveys [34][35][36], cohort research [37][38][39], and intervention research [40,41]. The development of SMS and smartphone apps has become an increasingly common method to deliver prevention and care interventions [42][43][44][45], while gaming methods have been incorporated to maintain participant engagement, particularly among youth, in research activities and to promote health behaviors [45,46].…”

Limited Interaction Targeted Epidemiology of HIV in Sexual and Gender Minority American Adolescents and Adults: Feasibility of the Keeping it LITE Study

“…The Keeping it LITE study was 1 of 4 studies funded by the National Institutes of Health to investigate the implementation of large-scale digital HIV interventions for sexual minority men and transgender persons [ 21 - 23 ]. All studies have found success in recruiting large, web-based samples of individuals at risk for HIV, including transgender women [ 21 ] and sexual minority men [ 22 ]. However, the Keeping it LITE study was able to recruit a larger sample of minor youth compared with other studies recruiting youth [ 22 , 23 ] and was the only study to recruit youth aged 13-15 years.…”

Examining inequities in rates of undiagnosed HIV and rectal STIs in a large nationwide cohort study of sexual minority men

“…The present study uses baseline data from UNITE (Understanding New Infections through Targeted Epidemiology), a nationwide cohort study prospectively following SMM to better understand risk of HIV seroconversion. 17 UNITE involved routine surveys and annual HIV testing and was available in Spanish and English to SMM aged 16 and over. All procedures were reviewed and approved by the institutional review board of the City University of New York.…”