Understanding Self-Tracking Practices in Enigmatic Disease Management

A research project exploring how to design tools that better support people living with enigmatic diseases as they manage their condition over time.

The Problem

Self-tracking tools are often built around the assumption that tracking the “right” health variables will lead to actionable insights and greater control over one’s health. Yet, it remains unclear how these assumptions hold up in contexts marked by uncertainty, unpredictability, and frequent fluctuations in health needs, such as those experienced in enigmatic conditions.

For context, Enigmatic Diseases are defined as:

Some examples include: Crohn’s disease, Ulcerative Colitis, Endometriosis, Rheumatoid Arthritis, ...

The Ideia

Methodology

Recruitment

Recruitment was carried out through multiple complementary channels.

• We posted targeted study invitations in disease-focused Facebook groups and Reddit communities,
• and worked with local patient associations, who disseminated our call through mailing lists, WhatsApp groups, and online networks.

Participants

Eligibility criteria:

We were looking for individuals formally diagnosed with at least one enigmatic condition and, who had engaged in any form of self-tracking at least once in relation to their condition.

Data Collection

Semi-Structured Interviews:

• Total: 23 Interviews.
• Average time: 48 minutes (range: 25–75 min).
• The interview guide was organized around three main themes:
  First, participants were asked about their disease journey, with attention to their diagnostic experiences and early tracking practices. Second, they reflected on the role of self-tracking during good and bad days, exploring how practices shifted with changes in disease state. Third, participants were invited to discuss how they reviewed past data, including whether and how they revisited their data. To support recall and elicit concrete experiences, participants were encouraged to show us their tracking tools (e.g., apps, journals, spreadsheets) and share any examples of data they considered illustrative of fluctuations or of good and bad days. Rather than defining these terms in advance, we intentionally left good and bad days open to participants’ interpretation, allowing them to select examples that were personally meaningful and relevant to their lived experiences.

Results

Data

Although participants lived with different chronic conditions, there was a clear convergence in the types of data they considered most valuable to track.

• Symptoms were the central focus of tracking. Nearly all participants (N=21) recorded some aspect of their symptoms, including type, frequency, intensity, or timing (e.g., noting whether pain was worse at specific times of day). For some, this also extended to more qualitative details, such as descriptions of unusual sensations or even photographs to document visible changes (P19).
• Medication and treatment data were the second most common category. Participants tracked dosages, timing, and changes in prescriptions, sometimes also noting when medications were discontinued or running low (P10, P14).
• Medical documentation such as lab results, consultation dates, or hospital visits information was also considered valuable by those who wanted a reliable record of their clinical history (P4, P7, P9).
• Another frequently tracked category involved aspects of daily life that might influence or relate to symptoms. Participants frequently mentioned tracking diet, sleep, emotional states (eg. stress), menstruation, and activity.
• Biometric data (e.g., heart rate, step counts) were less commonly tracked, but participants noted that these measures could be useful in specific conditions.
• Some participants also tracked interventions, including goals, habits they wanted to change, and treatments that helped during flares (P3, P12, P14).

Tracking Goals

We identified five tracking goals across participants:

• Attributing Fluctuations and Symptoms: Identifying potential triggers (recognizing patterns and trends in data); and self-experimentation (test the effects of specific behaviors or treatments).
• Anticipating and Preventing Flare-Ups: Anticipate (Plan ahead for predictable vulnerabilities); and Prevent (Act quickly by recognizing early signs of a potential flare).
• Ensuring Recognition and Continuity in Care: Tracking to support medical appointments; as a memory support; to foster feelings of security and for self-advocacy in that context.
• Establishing a Diagnosis: Temporary goal used to suggest possible diagnosis and provide evidence that something is wrong. .
• Documenting: Passive tracking without a clear objective, people used this to preserve a timeline of disease and foster self-awareness.

Transition Between Goals

• Tracking goals are dynamic, changing frequently in response to shifting needs and fluctuations in people’s conditions.
• Most people begin tracking in an exploratory phase, often without a clear objective.
  • This typically occurs when tracking is introduced by a third party (e.g. a medical team) or during moments of uncertainty, such as diagnosis.
  • Some people initially track passively, focusing on documentation rather than goal-driven tracking.
• Goals evolve with experience.
  • After initial exploration, people often move toward tracking to identify relationships between variables or to support communication with healthcare professionals.
  • Some individuals continue documenting without a specific goal, reflecting personal preferences rather than unmet needs.
• Goals are temporary and frequently discontinued, aligning with the fluctuating nature of complex conditions.
  • Identifying triggers is a common short-term goal that requires continuous adaptation.
• Successful trigger identification enables progression.
  • Once triggers are identified, people shift toward applying this knowledge in daily life—anticipating, reducing exposure to, and preventing flare-ups.

Fluctuations