Congenital heart disease (CHD) requires ongoing monitoring to support long-term health outcomes, yet many patients experience gaps in care over time. Prior research has identified several factors associated with loss-to-follow-up, including lack of insurance coverage, limited access to specialized adult CHD care, gaps in patient knowledge, and challenges with transition readiness. Through participation in the AIM-AHEAD PAIR Program (Cohort 1), Dr. John Valdovinos has explored how artificial intelligence and machine learning (AI/ML) can be used to better understand care patterns and identify patients at risk of disengaging from routine cardiovascular care.
Study Design and Methods
Dr. Valdovinos’ research draws on data from the All of Us Controlled Tier Dataset (v8), including 6,459 patients with varying levels of CHD severity, ranging from atrial septal defects to more complex conditions such as hypoplastic left heart syndrome. Guided by life-course concepts, the study examines patterns of healthcare utilization using machine learning methods, including clustering and risk-scoring models, to characterize care trajectories.
The study also incorporates digital health data to better understand patient behavior outside of clinical settings. A subset of 537 CHD patients with Fitbit data is used to assess physical activity measures such as step count, active minutes, and heart rate, with comparisons to a non-CHD cohort of 36,071 individuals. Device adherence is considered to account for differences in wearable usage and data completeness.
Key Findings
Analyses highlight variation in healthcare access and utilization among individuals with CHD, including differences in reported barriers to care. Survey data suggest that experiences with healthcare access may differ across patient groups, underscoring the importance of both clinical and non-clinical factors.
Wearable data further point to differences in device use and activity patterns between CHD and non-CHD populations, with adherence influencing the availability of usable data.
Implications for Research and Clinical Practice
By integrating clinical, survey, and wearable data, this work demonstrates the potential of AI/ML to identify patterns associated with care utilization and disengagement among CHD patients. These insights help inform approaches for identifying patients at risk of loss-to-follow-up and supporting more personalized, continuous care.
This research also contributes to broader efforts to incorporate digital health data into clinical research and to better understand how behavioral and access-related factors shape long-term outcomes in CHD populations.
Recognition and Next Steps
Dr. Valdovinos’ work has resulted in one published manuscript and an additional submission, with findings presented at venues including the IEEE EMBS Conference, the AIM-AHEAD Annual Meeting, and international symposia. Ongoing efforts include grant activity, with one submission and additional proposals in progress.
This work has also supported training and mentorship across multiple levels, including undergraduate, post-baccalaureate, and graduate students in engineering and psychology.