Scientific Manuscripts
Theory-based and Person-centered Approach to Design a Digital Tool
Preprint · medRxiv · April 1, 2025 · DOI: 10.1101/2025.03.31.25324723 (opens in new tab)
Agarwal A, Valente J, Buenrostro K, et al.
This preprint walks through how ACHD patients, caregivers, and clinicians co-designed the EmpowerMyCH tool—from early interviews to prototypes—so the app reflects real-world needs across the lifespan. It has not yet completed formal peer review.
Podcasts
Tiny Little Hearts — Episode 12
"From Patients, For Patients: How EmpowerMyCH is Transforming the CHD Journey"
Listen Now (opens in new tab)Conference Posters & Presentations
Spotlighting Patient Engagement Research
Stories shared on national stages about how EmpowerMyCH elevates patient voices, improves clinical conversations, and sparks new research questions.
ACC 2024
"Empower My Congenital Heart": Design of a Digital Tool to Facilitate Patient Engagement and Care
April 2024 · Atlanta, GA
Macholl K, Sparks A, Gurvitz M, et al.
Shared how a patient-built tool keeps clinics and families on the same page.
View Abstract (opens in new tab)
Annual International Symposium on ACHD 2024
Framework to Enhance Patient Engagement in Navigating Healthcare: Patient & Provider Perspectives
May 2024 · Stevenson, WA
Macholl K, Sparks A, Gill A, et al.
Highlighted provider and patient tips for easier care coordination.
International Conference on ACHD 2024
"Empower My Congenital Heart": Design of a Behavioral Intervention to Facilitate Patient Engagement
May 2024 · Stevenson, WA
Agarwal A, Macholl K, Sparks A, et al.
Focused on behavioral nudges that keep ACHD adults engaged between visits.
AHA 2025
Acceptability and Feasibility Of A Digital Health Intervention For Adults with Congenital Heart Disease
November 2025 · New Orleans, LA
Valente J, Banala KR, Buenrostro K, et al.
Showed that a mobile companion can feel supportive and easy to use.
View Abstract (opens in new tab)
AHA 2025
The Impact of Race/Ethnicity, Education, and Income on Patient Engagement in ACHD Care
November 2025 · New Orleans, LA
Sandoval Rivera A, Valente J, Reddy Banala K, et al.
Surfaced how background and income shape empowerment needs.
View Abstract (opens in new tab)
AHA 2025
Understanding Patient Empowerment and Education Topics in Adult Congenital Populations
November 2025 · New Orleans, LA
Reddy Banala K, Valente J, Sandoval Rivera A, et al.
Outlined the education topics patients prioritize most.
View Abstract (opens in new tab)Stay in touch
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