HCMA and American Heart Association expand patient navigation support for hypertrophic cardiomyopathy

The Hypertrophic Cardiomyopathy Association and the American Heart Association have launched a two-year research collaboration to expand patient navigation support and measure patient-reported outcomes. The project will serve 400 patients and families across four HCMA Recognized Center of Excellence sites and aims to create an evidence-based model for care.

Why it matters: - The collaboration is designed to improve how patients with hypertrophic cardiomyopathy, or HCM, navigate care, insurance and support systems. - The project will measure patient-reported outcomes, including quality of life, confidence and self-management skills. - The effort aims to establish an evidence-based standard for patient navigation that can be used more broadly across the HCM community.

What happened: - The Hypertrophic Cardiomyopathy Association and the American Heart Association entered a collaborative research relationship. - The two-year project will expand HCMA’s existing service model. - The program will run across four HCMA Recognized Center of Excellence sites. - By the end of the project, 400 patients and families are expected to complete the intake and navigation process.

The details: - HCMA has spent more than 30 years providing education, support, intake services and personalized navigation assistance to patients and families. - The research will use quantitative methods to formally measure patient-reported outcomes. - The expanded navigation offering will use new and existing tools from both organizations. - The program will provide HCM education to help patients understand their disease and treatment options. - The program will also include emotional and psychological support to reduce stress and support shared decision-making. - The service model will address social health drivers with access. - The program will focus on activation and self-management to strengthen confidence and self-efficacy. - The collaboration will also help patients handle clinical and administrative issues, coordinate with care teams and navigate insurance changes. - HCMA was founded in 1996 as an international resource for patients, families and the medical community. - HCMA is a 501(c)(3) nonprofit with offices in Denville, New Jersey. - HCM is a genetic heart muscle disorder affecting 1 in 250 people worldwide, according to HCMA. - The release also describes HCM as affecting between 1 in 200 and 1 in 500 people.

Between the lines: - The project moves HCMA’s patient support work from service delivery alone toward a research-backed model. - Lisa Salberg, HCMA CEO and founder, said the effort will help the organization identify where it is succeeding and where more work is needed. - The collaboration gives both groups a way to turn patient experience data into changes in care support.

What's next: - HCMA and the American Heart Association will collect outcomes data over two years as patients move through intake and navigation. - The organizations are expected to use the findings to refine support tools and improve the navigation model for future patients. - HCMA says the broader community should benefit from more effective help navigating HCM care. - More information is available at HCMA's website. - HCMA also shared social channels at LinkedIn, Facebook and YouTube.

The bottom line: - The partnership pairs patient support with research, with the goal of making HCM navigation more effective and measurable.