COVID Long Haul (CLH) is an emerging chronic illness with varied patient experiences. Our understanding of CLH is often limited to data from electronic health records (EHRs), such as diagnoses or problem lists, which do not capture the volatility and severity of symptoms or their impact. To better understand the unique presentation of CLH, we conducted a 3-month long cohort study with 14 CLH patients, collecting objective (EHR, daily Fitbit logs) and subjective (weekly surveys, interviews) data. Our findings reveal a complex presentation of symptoms, associated uncertainty, and the ensuing impact CLH has on patients' personal and professional lives. We identify patient needs, practices, and challenges around adhering to clinical recommendations, engaging with health data, and establishing "new normals" post COVID. We reflect on the potential found at the intersection of these various data streams and the persuasive heuristics possible when designing for this new population and their specific needs.

翻译：COVID长期后遗症（CLH）是一种新型慢性疾病，患者经历存在显著差异。目前我们对其的理解常局限于电子健康档案（EHR）数据，如诊断或问题列表，这些数据无法捕捉症状的波动性、严重程度及其影响。为更深入理解CLH的独特表现，我们开展了一项为期3个月的纵向队列研究，纳入14名CLH患者，收集客观数据（EHR、每日Fitbit日志）与主观数据（每周调查、访谈）。研究结果揭示了CLH复杂的症状表现、伴随的不确定性，以及其对患者个人与职业生活的持续影响。我们识别出患者在遵循临床建议、参与健康数据管理及建立新冠后“新常态”过程中的需求、实践与挑战。本文反思了多源数据交叉分析的潜在价值，以及针对这一新兴人群及其特定需求进行设计时的说服性启发策略。