Fateme Rajabiyazdi

Shri Harini Ramesh, Foroozan Daneshzand, Matteo Sotelo et al.

Older adults living with multiple chronic conditions (MCC) can considerably benefit from collecting and reflecting on their health data. Many older adults collect their health data using various approaches, such as digital tools or handwritten notebooks. However, in these approaches, the act of collecting data does not itself yield insights; sensemaking and reflection happen only if individuals later review their accumulated records. The daily process of data collection thus offers limited opportunity for individuals to actively engage with their data or find the process personally meaningful and enjoyable. Personal data input visualizations using physical tokens offer a promising solution that can help individuals recognize evolving patterns while collecting data and discover meaningful insights more serendipitously and engagingly. Yet, there is a limited understanding of whether and how older adults living with MCC might adopt physical input visualizations to collect data and reflect on their health, and how the tangible, expressive, and personalizable nature of this process supports their sensemaking and reflection. In this paper, we present the results of our interview and diary studies in which older adults living with MCC inputted health data using physical tokens over two weeks. Our findings highlight the diverse and unique needs of older adults for tracking personal health data, illustrating how they adapt strategies and personalize physical input visualizations to align with their individual needs. We demonstrate how older adults integrated input visualizations into daily routines and leveraged tangible markers to reflect on patterns and behaviors, while enjoying the process of tracking and focusing on personal expression and meaningful reflection. Finally, we provide design considerations for supporting older adults with MCC when inputting health data through physical tokens.

Mashrur Rashik, Shilpa Sweth, Nishtha Agrawal et al.

Journaling plays a crucial role in managing chronic conditions by allowing patients to document symptoms and medication intake, providing essential data for long-term care. While valuable, traditional journaling methods often rely on static, self-directed entries, lacking interactive feedback and real-time guidance. This gap can result in incomplete or imprecise information, limiting its usefulness for effective treatment. To address this gap, we introduce PATRIKA, an AI-enabled prototype designed specifically for people with Parkinson's disease (PwPD). The system incorporates cooperative conversation principles, clinical interview simulations, and personalization to create a more effective and user-friendly journaling experience. Through two user studies with PwPD and iterative refinement of PATRIKA, we demonstrate conversational journaling's significant potential in patient engagement and collecting clinically valuable information. Our results showed that generating probing questions PATRIKA turned journaling into a bi-directional interaction. Additionally, we offer insights for designing journaling systems for healthcare and future directions for promoting sustained journaling.

Fateme Rajabiyazdi, Julie Babione, Doreen M. Rabi et al.

Creating supportive technologies for people living with multiple chronic conditions is extremely challenging. These patients are often faced with substantial visible and invisible treatment work as well as their everyday responsibilities, including coordinating across providers, tracking information, and repeating communication in emotionally charged contexts. In the Cumulative Complexity Model (CuCoM), the balance between patient workload and patient capacity shapes what patients can realistically take on, including whether a digital tool can be adopted and sustained. In this paper, we report engagement lessons from implementing MyCareCompass, a patient-facing digital health intervention (DHI) intended to support day-to-day self-management for people living with multiple chronic conditions. We define engagement as patient uptake and sustained use during a two-month pilot study of our platform, drawing on usage analytics and follow-up feedback, and distill three implementation lessons for designing for engagement in complex chronic care.

Fateme Rajabiyazdi, Charles Perin, Lora Oehlberg et al.

Designing patient-collected health data visualizations to support discussing patient data during clinical visits is a challenging problem due to the heterogeneity of the parties involved: patients, healthcare providers, and healthcare systems. Designers must ensure that all parties' needs are met. This complexity makes it challenging to find a definitive solution that can work for every individual. We have approached this research problem -- communicating patient data during clinical visits -- as a wicked problem. In this article, we outline how wicked problem characteristics apply to our research problem. We then describe the research methodologies we employed to explore the design space of individualized patient data visualization solutions. Last, we reflect on the insights and experiences we gained through this exploratory design process. We conclude with a call to action for researchers and visualization designers to consider patients' and healthcare providers' individualities when designing patient data visualizations.