BACKGROUND: Heart Failure (HF) is a leading cause of mortality in the US. Symptoms span exercise, sleep, appetite and fatigue, and patient reported outcomes (PROs) are highly individual. We describe a novel virtual engagement program using PROs and person generated health data (PGHD) from commercial wearable sensors to understand and help improve patient experiences in HF.
METHODS: Evidation Health, in collaboration with the ACC, developed ‘Heart Health on Achievement’ (HHA), an HF-specific, opt-in program. We conducted a cross-sectional study of patients with self-reported HF for quality of life and patient journey insights. This along with qualitative patient and clinician interviews was used to assess unmet needs and define program features. We recruited participants from the study into a pilot program, established core metrics and collected initial participant feedback.
RESULTS: Our foundational cross-sectional study of 822 patients with self-reported HF was demographically (30% non-white, 67% female), geographically (50 states; 17% rural) and socioeconomically (42.5K annual median income) diverse. 61% were aware of symptoms prior to their self-reported estimated date of diagnosis. Of patients who report never having changed medications, 31% report severe symptom burden. 73% of those reporting more frequent (weekly or monthly) medication changes report improved symptoms (“better” or “much better”). Symptom tracking, patient - clinician communication and health education were identified as key areas for patient value and informed the HHA pilot feature list. Features include curated, tailored content (e.g., ACC's CardioSmart library, program insights), a weekly symptom diary, a custom summary report of activity and symptoms to share with clinicians, and nudges to engage the care team when appropriate. We invited an initial list of 200 HF participants to join the HHA pilot, of which 136 enrolled.
CONCLUSION: We describe a novel virtual program to engage HF patients in their health journey, using digital health tools and PGHD-focused studies to capture HF information. These approaches can yield novel insights and help direct and improve care in a holistic, patient-centered way.
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