Michelle Birkett

Background: Little is known about the composition and function of the social networks of adolescent and young adult survivors of cancer, despite the importance of social health for adolescent and young adult development. For adolescent and young adult survivors of cancer, social networks may be particularly important sources of support and coping. Understanding this group’s social health through understanding their social networks can inform intervention development to improve various facets of health and life productivity. Objective: The objective of this descriptive study was to explore the feasibility and acceptability of collecting and analyzing social network data using the Network Canvas platform among a subset of adolescent and young adult survivors of childhood cancer. Methods: We used cognitive interviewing, a qualitative method to assess survey comprehension and usability, to assess the feasibility and acceptability of using the Network Canvas social network data collection platform among 10 adolescent and young adult survivors of cancer. Participants (ie, egos) were asked about people (ie, alters) in their networks before cancer diagnosis (via recall) and currently (after cancer diagnosis). Feasibility was explored in three ways: (1) the proportion of participants who completed the full Network Canvas survey; (2) qualitative analysis of cognitive interviews addressing usability and comprehension; and (3) demonstration of whether self-administered, role-anonymized responses yielded data complete enough to support the creation of standard egocentric network measures through preliminary descriptive statistics. Acceptability was explored through qualitative analysis of the desire of participants to use Network Canvas again and features they liked when using Network Canvas. Results: In terms of feasibility, all 10 participants completed the Network Canvas survey. In qualitative analysis, participants described the ease of using Network Canvas (including engagement) while also describing ways to improve its usability. In terms of acceptability, when asked if they would use Network Canvas again, participants overall answered positively. Conclusions: Network Canvas use among our sample of adolescent and young adult survivors of cancer was feasible and acceptable based on this exploratory analysis. The collection and analysis of social network data using Network Canvas was feasible in this pilot study. Additionally, the potentially therapeutic experience reported by some participants after completing the Network Canvas survey deserves further exploration. This work provides a starting point for future social health studies, psychosocial programming, and identification of those at risk of social disconnect.

Objectives: We captured a fine-grained dataset of unstructured social interaction with socially meaningful group labels to fill a gap in the study of face-to-face interaction. Prior interaction data from conferences, classrooms, hospitals, and workplaces exhibit network signatures such as heterogeneous contact rates, clustering, and bursty dynamics. However, schedules, room assignments, and authority roles in these settings may obscure unstructured social group dynamics. Studies on group mixing often rely on demographic proxies like gender, or assigned categories like school classes, rather than relationship-based groups. We aim to understand if temporal network signatures of institutionally structured settings generalize to unstructured social interaction. Data description: We present the first public temporal proximity network dataset of a privately hosted social event with contextual relationship-based group membership. At the outdoor cocktail hour of a wedding, 95 participants wore proximity sensor badges that detected other badge-wearers within approximately 1.5 m in 5 s intervals. This dataset, coarsened to 10 s temporal bins, contains 7,213 contact events over 2,760 observed dyads. Participants self-reported their relationship category with respect to the wedding couple, enabling group mixing analysis. Beyond implications for the generalizability of interaction patterns, this dataset supports social event modeling for applications from contact tracing to social-space design.

Ethical considerations in social network studies are grounded in the general principles of human subjects’ research, including avoidance of harm, promotion of justice, equitable distribution of burdens and benefits, respect for human dignity, and protection of confidentiality. To help navigate these challenges, this article presents recommendations for conducting ethical network research, developed by a multi-disciplinary and multi-national working group. The article is divided in three main sections where there are certain recommendations identified for each one of them: data collections, use, and availability. Discovering how others addressed and solved problems can be a way for all of us to improve our capacity to stand up to the scrutiny of ethical governance bodies, while also increasing our capacity to responsibly address novel, rare, or otherwise difficult situations for which institutions provide limited guidance. We see this as a first step toward a virtuous circle, or a form of “generalized indirect reciprocity” whereby researchers share information that may be relevant for others, and benefit at the same time from the information given by other members of the social networks analysis community. Our goal is to continue to produce and promote scientifically solid, ethical social network research.

Patients with Alzheimer disease commonly rely on family caregivers for daily functioning. Research shows that relationships between caregivers and persons with memory loss have important effects on the health and well-being of both caregivers and persons with memory loss. However, most studies rely on a single caregiver-person with memory loss dyad as the unit of analysis, thereby neglecting the broader network of caregivers who collectively shape care experiences and outcomes. This study develops a conceptual and methodological framework for studying caregiver networks and investigates how the properties of caregiver networks relate to health and well-being outcomes for both persons with memory loss and caregivers. It measures and maps the social networks of caregivers of persons with memory loss while examining population heterogeneity in caregiver relationships and identifying network-based predictors of well-being for both caregivers and persons with memory loss. Our team is conducting a large multilocation (Illinois, Indiana, and Hawaii) study comprising 200 caregiver networks of persons with memory loss, supported by data from persons with memory loss and their caregivers. Networks will be collected using cutting-edge Network Canvas software tools, developed by members of our team within the Complex Data Collective, and analyzed using both quantitative and mixed methods. This study was funded in August 2023 by the National Institutes of Health (R01AG083034), with an expected end date of July 2028. This study protocol was approved by the institutional review board of Northwestern University (STU00219675) and was piloted internally before participant recruitment began in January 2025. As of March 2026, a total of 155 participants have been enrolled. Enrollment is planned to end by April 2027, with results expected between August 2027 and November 2027. This study advances research on caregivers of persons with memory loss by operationalizing a scalable and replicable approach to measuring caregiver networks. The ability to easily measure and identify structural features of caregiver systems helps in identifying predictors of caregiver experiences and outcomes and provides large benefits for the caregiver-person with memory loss research community.

BACKGROUND Patients with Alzheimer’s disease (AD) commonly rely on family caregivers for daily function. Research shows caregiver-person with memory loss (PWML) relationships have important effects on health and well-being for both caregivers and PWML. However, most studies rely on a single caregiver-PWML dyad as the unit of analysis, thereby neglecting the broader network of caregivers who collectively shape care experiences and outcomes. OBJECTIVE This protocol paper describes the conceptual and methodological framework for a study of caregiver networks. Study aims are to measure and map the social networks of caregivers of PWML while examining population heterogeneity in caregiver relationships and identify network-based predictors of well-being for both caregivers and PWML. METHODS Our team will conduct a large multi-location (IL, IN, HI) study of 200 PWML caregiver networks supported by data from PWML and their caregivers. Networks will be collected using our team’s cutting edge Network Canvas software tools and analyzed using both quantitative and mixed methods. RESULTS This study was awarded in August 2023 and is currently in its second year of data collection. CONCLUSIONS This project advances PWML caregiver research by operationalizing a scalable and replicable approach to measuring caregiver networks. The ability to easily measure and identify structural features of caregiver systems helps identify predictors of caregiver experiences and outcomes, and provides large benefits for the caregiver-PWML research community.

BACKGROUND Little is known about adolescent/young adult cancer survivors’ (AYACS) social network composition, despite its importance for adolescent/young adult development. We assessed feasibility and acceptability of collecting AYACS’ social network data using the Network Canvas platform, and described their social networks. OBJECTIVE The objective of this study was to assess feasibility and acceptability of collecting social network data among AYACS, and to describe a preliminary sample of AYACS' social networks. METHODS We used cognitive interviewing, a qualitative method to assess survey comprehension and usability to assess feasibility and acceptability of a Network Canvas survey among 10 AYACS. Participants (i.e., egos) were asked about people in their networks (i.e., alters) pre-cancer diagnosis (via recall) and post-cancer diagnosis (current). Data was collected on ego-alter relationships about: 1) Health discussions; 2) Communication; 3) Informational, financial, and emotional social support; and 4) Relationship strength. RESULTS Feasibility: All 10 participants completed the Network Canvas survey. Acceptability: When asked if they would use Network Canvas again, participants overall answered positively. Social network descriptives: Average ego age was 6 years (range 1-17) at diagnosis and 22 (range 18-29) at interview. Networks averaged 7.2 alters. Networks contained a higher proportion of friends post-cancer diagnosis. From pre- to post-cancer diagnosis, discussion of physical and mental/emotional health within the same ego-alter relationships increased (50% to 58%; 28% to 56%, respectively). Among alters with whom relationships were stronger post-cancer diagnosis, in-person contact was the modal communication type (37%). Alters who provided social support showed high retention over time. Egos with quantitatively larger networks had qualitatively sparser networks (based on proportion of closer alter-alter relationships), and a lower proportion of strengthened ego-alter relationships post-cancer diagnosis. CONCLUSIONS Network Canvas usage among AYACS was feasible and acceptable. We found quantitative and qualitative network changes following a diagnosis, which may parallel normal adolescent/young adult development. This work provides a foundation for future studies, psychosocial programming, and identification of those at risk for social disconnect. CLINICALTRIAL N/A

Introduction: Racial, ethnic, and sexual and gender minority populations are disproportionately impacted by HIV and other infectious diseases. A rigorous and holistic view of how individual and complex factors interact to produce health disparities among minority populations is urgently necessary. Methods: This project seeks to understand the social and contextual systems around the most marginalized HIV-impacted populations by investigating how differences in access to people and places confer HIV risk. Specifically, we have planned an innovative observational study across five US cities, administering in-depth remote network surveys to 2,700 racially diverse young men who have sex with men and transgender women. The data captured will be used to develop simulation models of city-specific synthetic populations to examine how differences in the people and places populations have access to pools risk within marginalized populations and increases their disparities in HIV. Results: The study was awarded in August 2024 but has paused since March 2025 due to the NIH’s termination of the study just prior to the start of participant recruitment. The future of the work is currently unclear as we pursue multiple avenues for reinstatement. Discussion: Drawing upon both our expertise in network modeling and our strong community partnerships, this project remains poised to transform scientific understanding of the structural drivers of health inequity.

Introduction: The spaces where young men who have sex with men (YMSM) meet sex partners likely play a key role in racial disparities in HIV. Research is needed about racial differences in the online and offline spaces YMSM meet partners and their experiences in these spaces to inform HIV-related public policy. Methods: In this explanatory sequential mixed-methods study, we visualized network data from a sample of 413 YMSM (age 16–29) to illustrate racial differences in how participants met their sex partners, which we used in interviews with 33 participants to elicit their responses and interpretations. Data were collected in 2017. Results: White YMSM met sex partners in a narrower range of spaces (e.g., using dominant apps that were more popular among White YMSM, through existing networks), whereas Black and Latino YMSM bridged a greater range of spaces (e.g., utilizing multiple apps with diverse user bases, approaching strangers in public spaces). Participants described complex, context- and identity-dependent experiences of risk, safety, and intersectional stigma. Conclusions: The spatial structures of partner-seeking among YMSM are racialized: while White YMSM tend to meet partners within insulated, dominant spaces and known networks, Black and Latino YMSM bridge a diverse range of online and in-person venues. These dynamics may help explain racial disparities in HIV transmission networks. Policy Implications: Findings underscore the importance of addressing deeper structural and systemic factors that contribute to population dynamics underlying racial disparities in HIV.

Background: Young men who have sex with men and young transgender women (YMSM-YTW) use online spaces to meet sexual partners with increasing regularity, and research shows that experiences of racism online mimics the real world. Objective: We analyzed differences by race and ethnicity in web-based and mobile apps used to meet sexual partners as reported by Chicago-based YMSM-YTW in 2016‐2017. Methods: A racially and ethnically diverse sample of 643 YMSM-YTW aged 16‐29 years were asked to name websites or mobile apps used to seek a sexual partner in the prior 6 months, as well as provide information about sexual partnerships from the same period. We used logistic regression to assess the adjusted association of race and ethnicity with (1) use of any website or mobile apps to find a sexual partner, (2) use of a “social network” to find a sexual partner compared to websites or mobile apps predominantly used for dating or hookups, (3) use of specific websites or mobile apps, and (4) reporting successfully meeting a sexual partner online among website or mobile app users. Results: While most YMSM-YTW (454/643, 70.6%) used websites or mobile apps to find sexual partners, we found that Black non-Hispanic YMSM-YTW were significantly less likely to report doing so (comparing White non-Hispanic to Black non-Hispanic: adjusted odds ratio [aOR] 1.74, 95% CI 1.10‐2.76). Black non-Hispanic YMSM-YTW were more likely to have used a social network site to find a sexual partner (comparing White non-Hispanic to Black non-Hispanic: aOR 0.20, 95% CI 0.11‐0.37), though this was only reported by one-third (149/454, 32.8%) of all app-using participants. Individual apps used varied by race and ethnicity, with Grindr, Tinder, and Scruff being more common among White non-Hispanic YMSM-YTW (93/123, 75.6%; 72/123, 58.5%; and 30/123, 24.4%, respectively) than among Black non-Hispanic YMSM-YTW (65/178, 36.5%; 25/178, 14%; and 4/178, 2.2%, respectively) and Jack’d and Facebook being more common among Black non-Hispanic YMSM-YTW (105/178, 59% and 64/178, 36%, respectively) than among White non-Hispanic YMSM-YTW (6/123, 4.9% and 8/123, 6.5%, respectively). Finally, we found that while half (230/454, 50.7%) of YMSM-YTW app users reported successfully meeting a new sexual partner on an app, Black non-Hispanic YMSM-YTW app users were less likely to have done so than White non-Hispanic app users (comparing White non-Hispanic to Black non-Hispanic: aOR 2.46, 95% CI 1.50‐4.05). Conclusions: We found that Black non-Hispanic YMSM-YTW engaged with websites or mobile apps and found sexual partners systematically differently than White non-Hispanic YMSM-YTW. Our findings give a deeper understanding of how racial and ethnic sexual mixing patterns arise and have implications for the spread of sexually transmitted infections among Chicago’s YMSM-YTW.

Background: Characteristics of an individual’s social network have been important factors in understanding infectious disease transmission patterns. Social network data collection is generally time and resource intensive, yet it is crucial to our understanding of the complex epidemiologic landscape of human behaviors among stigmatized social groups. Objective: We sought to evaluate the feasibility and acceptability of a self-administered social network data collection tool, Network Canvas, among Black men who have sex with men (BMSM) and transgender persons using the think-aloud method, which is a robust and flexible research technique used to perform usability testing. Methods: We piloted a self-administered network interview within the Network Canvas Software Suite. Participants aged 18 years and older were recruited through a community-based organization in Atlanta, GA, and were included based upon their willingness to share information on sexual behaviors and drug use for themselves and their social networks. A semistructured interview guide was used to document cognitive decision-making processes while using the tool. Recorded interviews were transcribed verbatim, and thematic analyses were performed. Results: Among 7 BMSM and transgender participants, three main themes were identified from cognitive processes: (1) the utility, (2) navigation, and (3) intuitive design of Network Canvas. Overall, Network Canvas was described as “easy to use,” with suggestions mainly directed toward improving navigation tools and implementing an initial tutorial on the program prior to use. Participants were willing to use Network Canvas to document their social networks and characteristics. In general, observed verbal responses from participants matched their behavior, although there were some discrepancies between verbal affirmations of use and understanding versus external observation. Conclusions: We found Network Canvas to be a useful new tool to capture social network data. Self-administration allowed participants the opportunity to provide sensitive information about themselves and their social networks. Furthermore, automated name generation and visualization of an individuals’ social network in the app has the potential to reduce cognitive burden during data collection. More efficient methods of social network data collection have the potential to provide epidemiologic information to guide prevention efforts for populations with stigmatized health conditions or behaviors.