Rethinking Lived Experience in Chronic Illness: Navigating Bodily Doubt with Consumer Technology in Atrial Fibrillation Self-Care

Research Background and Problem

• Problem and Challenges: This paper explores how patients with chronic illnesses, particularly atrial fibrillation (AF), utilize consumer technologies for self-care. AF is an unpredictable heart condition with complex symptoms and severe complications, significantly impacting patients' physical and mental health. Current clinical care methods fail to adequately support patients' daily self-care needs. While consumer technologies are widely adopted, there is a lack of effective research and guidelines in this area.
• Significance: Globally, 59 million people are affected by AF, a condition that profoundly impacts quality of life and health outcomes, especially due to its potential to cause fatal complications such as stroke and heart failure. With the rise of consumer wearable technologies in cardiology, it is increasingly important to study how these technologies shape patients' lived experiences and medical decision-making.
• Research Motivation: Although existing Human-Computer Interaction (HCI) research has explored self-tracking tools for chronic disease management, there is a lack of studies on the use of technology and patient experiences in AF self-care. Furthermore, the increasing medicalization of consumer technologies is critical for the design and use of related tools.

Solution

• Methods and Contributions: This study conducted semi-structured interviews with 29 AF patients to analyze how consumer technologies support their self-care. These technologies include wearable devices (e.g., Apple Watch), portable electrocardiogram (ECG) monitors, and third-party applications. The paper introduces the theoretical frameworks of the "digitized heart" and "bodily doubt" to interpret patient experiences.
• Innovations:
  1. Introduced the concept of "bodily doubt," describing patients' persistent uncertainty about their bodily perceptions and the role of technology in alleviating or exacerbating this uncertainty.
  2. Proposed the concept of the "digitized heart," illustrating how patients transform their heart health data into clinical narratives to influence treatment decisions.
  3. Identified new uses of technology in medication management (e.g., "on-demand medication") and revealed its potential to improve interventions for asymptomatic patients.
• Key Technologies:
  • Data tracking and quantification: Using ECG and heart rate data to help patients identify and understand bodily signals.
  • Online communities and third-party support: Patients leverage informal channels (e.g., communities and apps) to fill knowledge gaps in data interpretation.
  • Customized clinical data sharing: Patients selectively share data with physicians to optimize medical decision-making.

Research Findings

• Specific Findings:
  1. Self-tracking technologies help patients learn and identify bodily signals related to AF.
  2. Technologies enable patients to perform "data work" based on the "digitized heart," facilitating more effective communication and decision-making in clinical interactions.
  3. Participants adopted technology-supported medication management strategies (e.g., "on-demand medication" confirmed with ECG), demonstrating the potential for innovation in self-care.
  4. The concept of "bodily doubt" explains how patients use technology to manage uncertainty, though the inability of technology to adapt to disease progression may exacerbate this uncertainty.
• Advantages Over Existing Solutions:
  • Consumer technologies enable the collection of patient-generated data (PGD), empowering patients to play a more active role in decision-making.
  • They complement current clinical monitoring methods for AF management, such as capturing intermittent or asymptomatic AF episodes.
  • Provide in-depth insights into how technology influences disease experiences, challenging traditional "experience-first" design paradigms.
• Experimental and Evaluation Results:
  • In the early stages, technology significantly improved patients' ability to recognize bodily signals and boosted their confidence.
  • However, as the disease progressed, technology failed to fully meet patients' needs, leading to the abandonment of certain functions or decreased trust in the data.
• Limitations and Future Directions:
  • Sample limitations: The study primarily involved participants with high education and income levels, which may not represent all AF patients.
  • Technological applicability: The study did not fully explore late-stage patients or cases where technology was completely abandoned.
  • Future Directions:
    1. Explore how technology can better adapt to disease progression, including tracking complex arrhythmias.
    2. Investigate how to integrate patient-generated data with clinical data to improve the personalization and accuracy of medical interventions.
    3. Standardize consumer medical technologies to ensure professional and safe data interpretation.