Abstract Body (Do not enter title and authors here): Introduction
The Hypertrophic Cardiomyopathy Association (HCMA) plays a key role in educating and empowering individuals navigating the lifelong care and support needs of hypertrophic cardiomyopathy (HCM). As HCMA membership grows, more scalable, accessible and streamlined service is needed. The HCMA partnered with Nest Genomics to develop a digital patient navigator (DPN) to improve education, awareness of resources, client service workflows, and registry data collection.
Hypothesis
Patients with HCM will engage with a novel digital navigator available to them via patient advocacy organization membership.
Methods
HCMA emailed members in February 2023 about the DPN pilot. HCMA provided contact information for all clients ever enrolled to Nest. Invite links were sent via email or text and reminders were sent if needed. Clients opening the link viewed a brief onboarding about the relationship between HCMA and Nest and the purpose of the DPN. Next, the client viewed a home page with 4 “To-Do” items: learn about HCMA services, update medical history, update genetic testing history, and update Center of Excellence (COE). Client updates were populated into the HCMA registry. Clients could also explore a library of education on services and resources offered by the HCMA, HCM screenings and procedures, and when and how to connect with a COE.
Results
Since February 2023, 3682 individuals ever enrolled in the HCMA were invited to Nest via email (n=2208, 60%) or text (n=1474, 40%). Over one thousand members (n=1071, 29%) opened the invite, of those who opened, 287 (27%) completed the education on HCMA services, 127 members (12%) uploaded genetic test results, 311 members (29%) added a Center of Excellence and 274 members (26%) added the date of at least one procedure to their health history. Engagement was limited by an unknown number of members with outdated contact information and member attrition.
Conclusions
Individuals with HCM engage with a digital navigator that provides a centralized, accessible place to manage their care when offered via their patient advocacy group. The DPN may be an effective way to extend the reach of patient advocacy groups and empower patients to take an active role in their care. Additional services are being added to the DPN, including additional medical and family history collection, clinical trials consent, and notifications about management guideline updates. Further research to optimize engagement and measure satisfaction is needed.