UCSF-led study creates digital health intervention to promote lifelong specialized care in adults with congenital heart disease
Source: Matthew Allsop
Copyright: The Authors
URL: https://mhealth.jmir.org/2026/1/e73483
License: Licensed by the authors
Congenital heart disease is a condition primarily associated with infants and children, but there are currently more adults than children living with congenital heart disease in the United States—estimated 2 million adults—and their numbers are increasing at a rate of 5% to 10% each year. Unfortunately, the vast majority of these adults no longer receive congenital heart disease specialty care, and gaps in this care over a lifetime can lead to preventable complications, hospitalizations, and even premature death.
In an effort to improve continuity of care for people with adult congenital heart disease (ACHD), clinical researchers at the University of California, San Francisco (UCSF) have designed a patient-centered, community–co-designed digital health intervention called “Empower My Congenital Heart” (EMCH) that addresses the systemic and personal barriers driving these gaps in care.
“Imagine you were born with a heart defect, had surgery as a child, and grew up relatively healthy—but your doctors told you that you’d need to see a heart specialist every year or two for the rest of your life,” said Anushree Agarwal, MD, MBBS, a cardiologist and UCSF associate professor of medicine. “For many people, life is hectic, specialists are far away, and sometimes patients simply don’t know that ongoing care is still necessary.”
To develop their digital tool, the researchers grounded their interventions in real patient experiences designed to motivate and empower patients to continue care. They conducted interviews with patients with ACHD and clinicians to identify barriers to specialized care and create patient-centered goals. Participants identified four priorities: providing credible resources, uplifting patient voices, customizing to patient needs, and centering positivity and joy. The researchers then gave the EMCH a user-friendly interface and made it accessible on both web and mobile platforms to reach diverse populations. Key intervention components of the app include concise and actionable messaging, educational modules, peer narratives, appointment planning nudges, and a digital medical passport.
Using proactive, repetitive content delivery (nudging) rather than relying on patients to seek out information enhances the app’s potential reach and impact. To date, more than 500 participants have used EMCH, and 87% have rated the educational modules as helpful for them to confidently navigate their condition. Participants found the exhibits readable, easily accessible, usable, and motivational.
The paper appears on June 23 in the Journal of Medical Internet Research.
Helping Physicians Make Patients Aware of Continuing Specialty Care Needs
While the intervention is designed for patients, the clinical problem it addresses is very much a physician and health system concern. EMCH was designed to augment, not replace, patient-provider interactions by building engagement skills outside clinic visits.
“Keeping this population engaged in guideline-recommended subspecialty care remains one of the greatest challenges we face as clinicians,” said Agarwal. “This tool was built for and with patients and also solves a problem that keeps physicians and health systems up at night.”
The researchers partnered with the patients, clinicians, and advocacy representatives from across the United States to co-design all components of EMCH. Community partners were essential in helping to determine key intervention objectives that could be advanced in a community setting and reach underserved populations. EMCH’s scalable digital health model is also intended for other programs to replicate. The advocacy partners included Adult Congenital Heart Association, Mended Little Hearts, Conquering CHD, Team Uncle Joe, and Strong Hearts Foundation.
EMCH is now being tested across multiple medical centers—with a particular focus on reaching patients from communities that have historically been left out of research and underserved by the health care system.
Original article:
Agarwal A, Valente J, Buenrostro K, et al. Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study. J Med Internet Res. 2026;28:e75867
URL: https://www.jmir.org/2026/1/e75867
doi: 10.2196/75867
Additional UCSF Authors: Karina Buenrostro, BA; Katelyn Macholl, BS; Juhi Mehta, BS; Karina Manayan, NP; Parang Kim, MA; Kunyi Li, MS, CGC; Pranav Ahuja, BS; Kevin Sun, MS; Megumi J Okumura, MD, MAS, and Gregory M Marcus, MD, MAS.
Additional Authors: Joseph Valente, BCPA, BS; Keerthana Reddy, MD; Aleah Sparks, NP; Kimberly Payton, EdD; Mark D Norris, MD, MS; Katia Bravo-Jaimes, MD; Leigh Reardon, MD; Philip Moons, PhD, RN; and Michelle Gurvitz, MD.
Funding: This research was supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health under Award Number K23HL151866 (Agarwal). The content is solely the responsibility of the presenters and does not necessarily represent the official views of the National Institutes of Health. Greg Marcus discloses support for the Eureka Research Platform from the National Institute of Biomedical Imaging and Bioengineering under Award Number 3U2CEB021881-05S1.
Disclosures: Mark Norris has been a Consultant for the American College of Cardiology since 2024.
About UCSF Health: UCSF Health is recognized worldwide for its innovative patient care, reflecting the latest medical knowledge, advanced technologies, and pioneering research. It includes the flagship UCSF Medical Center, which is a highly-ranked hospital, as well as UCSF Benioff Children’s Hospitals, with campuses in San Francisco and Oakland; two community hospitals, UCSF Health Stanyan Hospital and UCSF Health Hyde Hospital; Langley Porter Psychiatric Hospital; UCSF Benioff Children’s Physicians; and the UCSF Faculty Practice. These hospitals serve as the academic medical center of the University of California, San Francisco, which is world-renowned for its graduate-level health sciences education and biomedical research. UCSF Health has affiliations with hospitals and health organizations throughout the Bay Area. Visit http://www.ucsfhealth.org/. Follow UCSF Health on Facebook, Threads or LinkedIn.
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