Date of Award
5-2026
Document Type
Dissertation
Degree Name
Doctor of Philosophy (PhD)
Department
Computer Science
Committee Chair/Advisor
Caitlin Allen
Committee Member
Brian Dean
Committee Member
Paul Heider
Committee Member
Xia Jing
Committee Member
Aaron Masino
Abstract
Background Digital health technologies including patient portals, internet based health information seeking, and electronic communication platforms are central mechanisms for genomic risk communication and recruitment into genetic testing. Engagement with these tools occurs progressively rather than uniformly, and structural inequities may contribute to staged disengagement along digital health pathways. Identifying where disengagement occurs and whether it differs by demographic and contextual characteristics is critical for advancing equitable genomic implementation.
Objectives This dissertation evaluates progressive digital engagement and genetic testing intention across two complementary data sources. Aim 1 examines sequential engagement within a health system genomic outreach trial. Aim 2 evaluates staged digital engagement using nationally representative survey data and tests demographic associations with disengagement. Aim 3 explores emergent behavioral and contextual factors associated with digital genomic engagement.
Methods Aim 1: Data from the Genetic and Rare Disease Evaluation (GARDE) health system trial were used to evaluate sequential engagement across four stages: patient portal message opening, chatbot interaction, chatbot response, and expressed intention to pursue genetic testing. Descriptive statistics characterized engagement attrition across stages. Chi square and Fisher’s exact tests assessed associations between demographic characteristics and both portal message engagement and genetic testing intention. Aim 2: Using 2024 Health Information National Trends Survey data, respondents were classified into four mutually exclusive digital engagement groups based on validated survey items: 1: Digitally Disconnected (no internet health information use and no patient portal use), 2: Internet Only Users, 3: Portal Users Only, and 4: Digitally Integrated Users (engaging with both portal technologies and use of internet for health information). Demographic and social determinants included age, sex assigned at birth, race and ethnicity, education, income, insurance coverage, and rurality. Weighted descriptive statistics summarized national distributions across stages. Survey weighted chi square tests assessed whether demographic characteristics differed across progressive engagement stages. Aim 3: Exploratory analyses examined healthcare utilization, health burden, provider communication exposure, cancer information seeking, genetic testing exposure, and digital access indicators across engagement groups. Analyses focused on identifying gradients and patterns rather than confirmatory hypothesis testing. Observed patterns were synthesized to 2 generate mechanistic hypotheses regarding structural barriers, healthcare connectivity, competing health priorities, and digital literacy limitations.
Results Aim 1 demonstrates measurable attrition across sequential digital outreach stages within a real world genomic trial. Fewer than half of contacted patients opened the portal message, and a small subset engaged with the chatbot. No statistically significant demographic differences in genetic testing intention were observed, though analyses were limited by small sample size. Aim 2 is expected to demonstrate progressive national gradients of digital integration from complete disconnection to integrated portal based genomic engagement. Disengagement differences across demographic and social determinants of health were evaluated. Aim 3 identified distinct behavioral and contextual profiles associated with higher levels of digital integration, including greater healthcare system connectivity and provider communication exposure.
Conclusions This dissertation provides a staged framework for evaluating digital genomic engagement across both a health system intervention and nationally representative survey data. Findings identify measurable attrition points in digital recruitment pathways, quantify national patterns of staged engagement, and generate hypotheses regarding structural and behavioral mechanisms influencing participation in genomic health communication. Together, these results inform precision public health strategies to improve equitable access to digital genomic risk information and testing.
Recommended Citation
Coen, Emma, "Progressive Digital Health Engagement and Genetic Testing Intention: Evidence from The Genetic And Rare Disease Evaluation (GARDE) Health System Trial and the Health Information National Trends Survey (HINTS7)" (2026). All Dissertations. 4286.
https://open.clemson.edu/all_dissertations/4286