Chia-Fang Chung

Boundary Negotiating Artifacts in Personal Informatics: Patient-Provider Collaboration with Patient-Generated Data

Patient-generated data is increasingly common in chronic disease care management. Smartphone applications and wearable sensors help patients more easily collect health information. However, current commercial tools often do not effectively support patients and providers in collaboration surrounding these data. This paper examines patient expectations and current collaboration practices around patient-generated data. We survey 211 patients, interview 18 patients, and re-analyze a dataset of 21 provider interviews. We find that collaboration occurs in every stage of self- tracking and that patients and providers create boundary negotiating artifacts to support the collaboration. Building upon current practices with patient-generated data, we use these theories of patient and provider collaboration to analyze misunderstandings and privacy concerns as well as identify opportunities to better support these collaborations. We reflect on the social nature of patient-provider collaboration to suggest future development of the stage-based model of personal informatics and the theory of boundary negotiating artifacts.

When Personal Tracking Becomes Social: Examining the Use of Instagram for Healthy Eating

Many people appropriate social media and online communities in their pursuit of personal health goals, such as healthy eating or increased physical activity. However, people struggle with impression management, and with reaching the right audiences when they share health information on these platforms. Instagram, a popular photo-based social media platform, has attracted many people who post and share their food photos. We aim to inform the design of tools to support healthy behaviors by understanding how people appropriate Instagram to track and share food data, the benefits they obtain from doing so, and the challenges they encounter. We interviewed 16 women who consistently record and share what they eat on Instagram. Participants tracked to support themselves and others in their pursuit of healthy eating goals. They sought social support for their own tracking and healthy behaviors and strove to provide that support for others. People adapted their personal tracking practices to better receive and give this support. Applying these results to the design of health tracking tools has the potential to help people better access social support.

Supporting Patient-Provider Collaboration to Identify Individual Triggers using Food and Symptom Journals

Patient-generated data can allow patients and providers to collaboratively develop accurate diagnoses and actionable treatment plans. Unfortunately, patients and providers often lack effective support to make use of such data. We examine patient-provider collaboration to interpret patient-generated data. We focus on irritable bowel syndrome (IBS), a chronic illness in which particular foods can exacerbate symptoms. IBS management often requires patient-provider collaboration using a patients food and symptom journal to identify the patients triggers. We contribute interactive visualizations to support exploration of such journals, as well as an examination of patient-provider collaboration in interpreting the journals. Drawing upon individual and collaborative interviews with patients and providers, we find that collaborative review helps improve data comprehension and build mutual trust. We also find a desire to use tools like our interactive visualizations within and beyond clinic appointments. We discuss these findings and present guidance for the design of future tools.

The feasibility, usability, and clinical utility of traditional paper food and symptom journals for patients with irritable bowel syndrome

Paper food and gastrointestinal (GI) symptom journals are used to help irritable bowel syndrome (IBS) patients determine potential trigger foods. The primary aim of this study was to evaluate the feasibility, usability, and clinical utility of such journals as a data collection tool. A secondary aim was to explore a method for analyzing journal data to describe patterns of diet and symptoms.

Examining Self-Tracking by People with Migraine: Goals, Needs, and Opportunities in a Chronic Health Condition

Self-tracked health data can help people and their health providers understand and manage chronic conditions. This paper examines personal informatics practices and challenges in migraine, a condition characterized by unpredictable, intermittent, and poorly-understood symptoms. To investigate how people with migraine track and use data related to their condition, we surveyed 279 people with migraine and conducted semi-structured interviews with 13 survey respondents and 6 health providers. We find four distinct goals people bring to tracking and data: 1) answering questions about migraines, 2) predicting and preventing migraines, 3) monitoring and managing migraines over time, and 4) enabling motivation and social recognition. Each goal suggests different needs for the design of tools to support migraine tracking. We also find needs resulting from an individuals goals evolving over time, their varied personal experiences, and their communication and collaboration with providers. We discuss these goals and needs in terms of opportunities for personal informatics tools to facilitate learning to: 1) avoid common pitfalls; 2) support customization and flexibility; 3) account for burden, negativity, and lapsing; and 4) support management with uncertainty.

Opportunities for Oral Health Monitoring Technologies Beyond the Dental Clinic

Personal health and wellness technologies can improve peoples care at home, connect everyday activities to clinical settings, and allow more efficient use of clinical resources. Recently, the Human-Computer Interaction community has begun to develop tools to improve oral care. In this research, we investigate dental practices and information needs through surveys and interviews with a range of patients and oral health providers. We find that personal users want to track their progress---or lack thereof---between dental visits for feedback, so they can adjust their home care routines, or so they can seek an escalation in care if they identify a problem. Among providers and clinical health workers, there exists an opportunity for better screening and diagnostic tools to identify dental caries at early stages. Providers in rural areas desire better tools to communicate problem areas to patients and their caregivers to bridge oral health care disparities in areas with limited access to care. Our results can guide the development of dental technologies that can address currently unmet needs of patients and providers.

Supporting patient-provider communication and engagement with personal informatics data

Personal informatics data are prevalent in clinical care today. My research builds an understanding patient and provider needs and challenges to advance the design of personal informatics systems and theoretical understandings of patient-provider collaboration. Through studies of patients with Irritable Bowel Syndrome and people who want to eat healthier, I study peoples current tracking experiences and their collaborative review practices with providers. Based on these findings, I propose design and theoretical considerations regarding interactions among providers, patients, and patient-tracked data. I design and evaluate systems in situ to understand potential use of lightweight data collection and integration to support collaboration around personal informatics data.

Inter-Rater Reliability of Provider Interpretations of Irritable Bowel Syndrome Food and Symptom Journals

There are currently no standardized methods for identifying trigger food(s) from irritable bowel syndrome (IBS) food and symptom journals. The primary aim of this study was to assess the inter-rater reliability of providers’ interpretations of IBS journals. A second aim was to describe whether these interpretations varied for each patient. Eight providers reviewed 17 IBS journals and rated how likely key food groups (fermentable oligo-di-monosaccharides and polyols, high-calorie, gluten, caffeine, high-fiber) were to trigger IBS symptoms for each patient. Agreement of trigger food ratings was calculated using Krippendorff’s α-reliability estimate. Providers were also asked to write down recommendations they would give to each patient. Estimates of agreement of trigger food likelihood ratings were poor (average α = 0.07). Most providers gave similar trigger food likelihood ratings for over half the food groups. Four providers gave the exact same written recommendation(s) (range 3–7) to over half the patients. Inter-rater reliability of provider interpretations of IBS food and symptom journals was poor. Providers favored certain trigger food likelihood ratings and written recommendations. This supports the need for a more standardized method for interpreting these journals and/or more rigorous techniques to accurately identify personalized IBS food triggers.

Should you always have a backup? One vs. two goals in games

Number of goals does not have direct relationship with performance.People with two goals had higher self-appraisals of performance and played longer.Of those with two goals, a high percentage of people stopped after achieving their backup goal. Goal setting theory has been studied and adopted in a wide variety of domains including game design. While goals can help people regulate and change behavior, they are less motivating when people no longer believe they can meet their goals. Previous literature suggests that having two goalsa primary goal and a backup goalmight help people continue striving even when the primary goal becomes unattainable. We evaluated this hypothesis and found no direct relationship between two goals and performance. However, people having two goals had higher self-appraisals of their performance than those with one goal. People in the two-goal condition also played more rounds or spent more time in games. However, a high percentage of people stopped playing after achieving their backup goal. These results have the potential to enhance game experiences and may extend to other domains, such as health behavior change.