Research Summary

In my research, I focus on complex chronic conditions (CCC) such as pediatric rheumatism, renal failure, and cancer and blood disorders that are known to negatively impact multiple aspects of the patients' lived experience. During advanced forms of treatment (e.g., chemotherapy) adolescent patients (ages 10-19) must communicate all illness needs (spanning physical, psychological, social and emotional needs) to the care team, by building on meaningful representations of their illness experience to support ongoing awareness of their health status. Technology has the vast potential to help adolescents construct meaningful representations of their illness, yet no tools exist to support their engagement and communication of illness needs that build upon these representations. My answer to this problem and broader research vision is to design collaborative health information technologies that scaffold patients' gradual participation in care—by means of engaging family members as partners—throughout the process of understanding their own health data and communicating about it with care providers.

With oncology, hematology, nephrology and rheumatology clinical collaborators at Children's Healthcare of Atlanta (CHOA), I am investigating how information systems can be designed to better engage chronically ill adolescent patient families in care through the use of visual narratives that can augment the patient’s health data. For the past four years, I have been leading various research studies in both clinical and non-clinical settings that span field studies, mixed methods, prototype design and deployment, and engagement in healthcare. I specifically look at two types of patient data in my research: one that is generated in the clinic (i.e., diagnostic radiology reports), and one that is generated by the patient and their parent (i.e., self-reported observations of the patient’s illness experience).

Augmenting Clinical Data

My recent foray into realizing my research vision involved supporting patient families to review and communicate about diagnostic imaging findings in the clinical setting. Diagnostic radiology reports are increasingly being made available to patients and their family members. However, these reports are not typically comprehensible to lay recipients, impeding effective communication about report findings. To allay communication barriers stemming from a highly technical form of data, I led a three-part study that culminated in the design of a novel hand-held tablet prototype system, Rapport. The following research question guided this effort.

RQ: How can we design tools to improve medical communication about radiology imaging studies for patients and their family members?

To answer this RQ, our research team applied human-centered design principles to study the various communication needs of patients who are going through radiology imaging studies. We analyzed over thousands of online health forum posts (e.g., HealthBoards, Reddit, etc.) and conducted multiple interviews with cancer patient families to better understand these needs. In addition, we analyzed 205,250 de-identified MRI and CT reports and solicited radiologists' expertise to understand common underlying concepts in radiology reports. Insights from these studies informed the key features and final design of Rapport.

Rapport is a novel hand-held tablet application that automatically organizes report content and provides lay-friendly explanations and visualizations on-the-fly. It uses natural language processing (NLP) technology such as Apache cTAKES to identify clinically relevant terms and pulls 3D visualizations of the human anatomy as well as definitions from ontology databases, such as MedlinePlus, Wikipedia, and RadLex. Finally, based on collaboratively curated points of interest, Rapport generates a set of discussion topics to facilitate multi-party communication by helping patient families apend notes or questions they would like to discuss with the doctor.

In our pilot deployment at CHOA, Rapport received positive responses from 14 patient-parent pairs and five clinicians for which they provided further design insights into how we can improve the prototype. The results of the initial pilot study served as a clear demonstration of what it means to scaffold teen’s participation in their care through a collaborative health-oriented technology.

Augmenting Patient-Generated Data

My dissertation research focuses on understanding how mobile health systems can be designed to better engage adolescents and family caregivers throughout the process of tracking and co-designing rich representations of the patients' daily illness experiences that have personal relevance to their collaborative management of treatment-induced effects. In broad, three reseach questions guide my work:

RQ 1: How do adolescents with CCC's and family caregivers participate in care?
RQ 2: How can we design tools to elicit information about adolescents' everyday illness experiences?
RQ 3: How can we engage adolescent patients undergoing complex treatment in the design process, to create illness representations that are meaningful to these patients and their family members?

1. Understanding Patient Participation in Complex Care.

My early formative work provides an overview of the problem and design space for adolescents' participation in complex care, which address RQ 1. Through individual interviews (in private) with patients and their parents, I learned that adolescents' faced challenges participating in clinical conversations, communicating emotionally sensitive information, and managing physical and emotional responses. In particular, while patients downplayed their symptoms not to worry their parents, symptom reporting was often assumed by parental caregivers, even if the reported data may not adequately represent the patient's true felt experience. In another study, I conducted log analysis, survey and interviews to understand adolescent and parent perspectives after they have navigated the patient's health information through a tethered personal health records system, yet found that current patient portal technologies had limited means to engage these patients in care. These studies informed my decision to focus on the goal of accommodating patient and parent perspectives in symptom reporting by supporting their gradually evolving partnerships through the design of a patient-friendly and engaging technology.

2. Characterizing Patient-Defined Patient-Generated Data.

Informed by research on the positive impact of pictograms on symptom communication, and Brennan and Casper's concept of Observations of Daily Living (ODLs), my recent work, addressing RQ 2, explored the use of co-design methods to characterize patient-defined PGHD for communicating adolescents' lived experience. In this work I adapted the ODL framework and solicited domain knowledge from clinicians to generate design artifacts, or Visual ODLs, to elicit everyday illness experiences through co-design sessions with patient families. Through co-design, I found the need for technology to scaffold the process of encoding and articulating symptomatic experiences through representation of how symptoms affect patients' ability to engage in daily activities, and to support distinct roles which family caregivers can serve in tracking the patient experience (e.g., tracking metadata such as timing and frequency). In another study, I examined the potential value of Visual ODLs in clinical conversations, which uncovered important use cases demonstrating clinicians' preference to navigate ODLs to identify patients requiring immediate clinical attention, and promote patient-initiated first-person illness narratives during face-to-face encounters. These insights informed the design of the current CO-OP system and research goal to understand how the family unit could work together to reduce their tracking burden---an important goal that has implications for Family Informatics.

3. Supporting Situated Design Work in Everyday Life.

I am now designing an interactive mHealth system that utilizes Visual ODLs to investigate how technology can support adolescent patients and family caregivers' collaborative effort to track and co-create personally meaningful representations of everyday illnesss experiences. Over a 2-3 week period, the system will elicit and probe patients' and family caregivers' observations of symptomatic experiences in relation to their everyday activities, and their design input, through a suit of media technology readily available on their mobile device. One goal of this work is to create and evaluate a new method, `Episode-Based Co-Design (ECD)', which is motivated by the lack of methods for engaging patients and family members in the co-design process when the design needs to be close in time to phenomena of interest. To address RQ 3, I apply the ECD method to adolescent patients with CCC's, as a case study, to show that the method is useful, valid, and reliable for its intended purpose. To do this, I employ mobile ecological momentary assessment (EMA) methods that are geared towards achieving high ecological validity by placing the data collection activities in the hands of patients and their parental caregivers, in their natural setting. To better understand patient and parents' conceptions of the illness experience and to engage them in design thinking, I am conducting co-design activities that are informed by a rich set of data collaboratively collected on a daily basis by the patient family.

I believe my work will inform the design of tools that support patient and family partners' engagement with their everyday lived experiences by scaffolding their co-creation of personally meaningful representations. These co-designed representations could support other lay patients to better articulate illness experiences for their care provider. By combining lessons gleaned from both clinical and non-clinical contexts, I aim to continue contributing to a growing body of research that will shed light on how we can inform the design of collaborative health technologies in ways that foster adolescents' gradual participation and engagement in care.