Mapping Social Exclusions of Care: A Referral Registry for Advanced Heart Failure Therapy Access

Background Despite advances in heart failure management, disparities persist across populations, driven by systemic barriers to accessing advanced heart failure therapies. Existing registries capture outcomes after transplant listing or device implantation but fail to capture the upstream referral process where clinical decisions, social factors, and structural barriers converge. Objective To describe the design, methodology, and implementation framework for the Activating Decision-making and Value-based Alignment in Navigation and Community Engagement for Stage D Heart Failure (ADVANCED-HF) referral registry. Methods ADVANCED-HF is a prospective, multicenter observational registry employing a dual enrollment strategy to capture both patients referred for advanced heart failure evaluation and those meeting clinical criteria who have not been referred. The registry uses a hub-and-spoke network to connect academic safety-net hospitals with affiliated federally qualified health centers (FQHCs). Community health workers (CHWs) facilitate data collection across four domains: clinical thresholds, social determinants of health, decision architectures, and patient-reported outcomes. Implementation is guided by the Consolidated Framework for Implementation Research (CFIR), with evaluation using the RE-AIM framework. Expected Impact ADVANCED-HF will provide the first denominator-level view of advanced heart failure referral practices, enable identification of modifiable barriers, and guide targeted interventions to reduce disparities in access to lifesaving therapies.