Congenital heart disease is a condition primarily associated with infants and children, but that is changing. There are currently more adults than children living with congenital heart disease (ACHD) in the U.S. an estimated 2 million adults – and that number is increasing at a rate of 5% to 10% each year. Unfortunately, the vast majority of adults who were born with congenital heart disease no longer receive specialty care once they reach adulthood, and care gaps over a lifetime can lead to preventable complications, hospitalizations, and even premature death.
In an effort to improve continuity of care for people with ACHD, clinical researchers at UC San Francisco 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.”
EMCH uses proactive, repetitive content delivery (nudging) rather than relying on patients to seek out information, which 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 June 23 in the Journal of Medical Internet Research.
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 ACHD patients 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 across 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.
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 U.S. 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 healthcare system.
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 National Institute of Biomedical Imaging and Bioengineering under Award Number 3U2CEB021881-05S1.
Disclosures: Mark Norris is a Consultant for American College of Cardiology since 2024.