HEALTH INFORMATION TECHNOLOGY FOR TEEN/ADOLESCENT PATIENTS
a 14-year old pediatric patient interacts with software created by the H X lab during a visit to Children's Healthcare of Atlanta. He is using a tablet computer to view his medical record with the software, with his mother at his side.

Designing Health IT for Adolescent Patients and their Family Members

We are interested in how electronic health records can support patient-centered care across the patient's lifetime, spanning multiple care settings and family situations. Adolescence is a particularly complicated time during which pediatric patients are approaching autonomy—both developmentally and legally—and federal policy, state laws, and community norms are inconsistent regarding adolescent healthcare and privacy.

We have engaged 25 medical centers across the U.S. in a study investigating how each organization manages adolescent and parental proxy access to electronic health record systems, and how Health IT systems can better support both the privacy and care management needs of adolescent patients. We will present preliminary findings at the AMIA 2017 symposium.

The Variation in Patient Portal Access for Adolescents in the United States: How Different Medical Centers have Managed their Adolescent Access. Marianne Sharko, Lauren Wilcox, Matthew Hong, Jessica Ancker Proc. American Medical Informatics Association (AMIA) Annual Symposium. Nov 2017, Washington, DC, USA.


We previously investigated how teens with complex chronic illnesses—and separately, their parents—accessed and experienced a personal health record system. We gauged these experiences through analyses of usage logs over a 19-month period, and surveys and interviews conducted with parents and teens independently.

Adolescent and Caregiver Use of a Tethered Personal Health Record System. Matthew Hong, Lauren Wilcox, Clayton Feustel, Karen Wasilewski-Masker, Thomas Olson, Stephen Simoneaux. Proc. American Medical Informatics Association (AMIA) Annual Symposium, Nov 2016, Chicago, IL, USA.     [Presentation]



a grad student in the H X lab conducts qualitative analysis of interview transcripts using paper

Designing for Adolescents with Complex Chronic Illnesses

Adolescents with complex chronic illnesses, such as cancer and blood disorders, must partner with family and clinical caregivers to navigate risky procedures with life-altering implications, burdensome symptoms and lifelong treatments. We conducted in-depth interviews, non-participant observations of clinical consultations, and surveys, to better understand common challenges and needs of chronically-ill teens and their parents that could be supported through design. We draw on our findings to propose design goals for sociotechnical systems to support teens in partnering in their care, highlighting the need for design to support gradually evolving partnerships in care.

Care Partnerships: Toward Technology to Support Teens' Participation in their Health Care. Matt Hong, Lauren Wilcox, Daniel Machado, Thomas Olson, Stephen Simoneaux. In Proc. SIGCHI Conference on Human Factors in Computing Systems (CHI '16). May 2016, San Jose, CA, USA.


sketches made for a study with adolescents with cancer and blood disorders, to investigate how symptom-tracking tools should be designed for patients and their parents.

Co-Designing Symptom-Tracking Tools

Recognizing when a pediatric patient is experiencing physical responses to illness and treatment has significant importance for patients, especially as they undergo long-term treatment cycles such as chemotherapy, for which their successful recovery will largely depend on the careful balance between the effectiveness of treatment dose and its toxicity to the patient. Our prior studies with adolescent patients revealed that parents are predominantly in charge of tracking the patient’s symptomatic experiences and reporting them to clinical caregivers. Yet, they had difficulty understanding these patients’ everyday experiences while going through therapy, leading to discrepant interpretations about the patient experience.

We are running a series of formative design studies involving patients, family members, and clinicians, to formulate design requirements for mobile health (mHealth) tools for symptom tracking, communication, and management for adolescent and young adult (AYA) patients in oncology and hematology settings. Through co-design approaches, we are investigating how technology can support symptom-tracking in ways that respect patients' privacy and autonomy while enabling communication and family support.

Just-in-Time Design: In Situ Methods for Capturing and Articulating Adolescents’ Illness Experiences Matt Hong, Udaya Lakshmi, Lauren Wilcox. In Proc. WISH 2017 at the American Medical Informatics Association (AMIA) Annual Symposium. Washington, DC. Nov 2017.

GAMES FOR HEALTH


a screenshot of a slide from a presentation on our Games for Health study, showing a sample game Remission 2, with a link to the full presentation.

Design Features in Games for Health

Games for health (G4H) aim to improve health outcomes and encourage behavior change. While existing theoretical frameworks describe features of both games and health interventions, there has been limited systematic investigation into how disciplinary and interdisciplinary stakeholders understand design features in G4H.

We recruited 18 experts from the fields of game design, behavioral health, and games for health, and prompted them with 16 sample games. Applying methods including open card sorting and triading, we elicited themes and features (e.g., real-world interaction, game mechanics) around G4H.

We found evidence of conceptual differences suggesting that a G4H perspective is not simply the sum of game and health perspectives. At the same time, we found evidence of convergence in stakeholder views, including areas where game experts provided insights about health and vice versa.

In our ACM DIS 2017 paper, we discuss how this work can be applied to provide conceptual tools, improve the G4H design process, and guide approaches to encoding G4H-related data for large-scale empirical analysis.

Design Features in Games for Health: Disciplinary and Interdisciplinary Expert Perspectives. Christina Kelley, Lauren Wilcox, Wendy Ng, Jade Schiffer, Jessica Hammer. Proc. ACM DIS ’17, The 2017 Conf on Designing Interactive Systems. June 2017. Edinburgh, UK, 69–81.     [Presentation]



QUANTIFIED SELF & QUANTIFIED COMMUNITIES
architectural photo ample space to climb stairs

Situated Informatics

We are exploring ways to leverage large-scale personal health tracking in developing a better understanding of the built environment and its impact on the health behavior of those dwelling in the space. As part of a larger mobile sensing study, we collected a wide array of health-related data from university students using phone sensors and Ecological Momentary Assessment.

Utilizing this dataset, we are developing a process in which we map elements in the built environment to corresponding health behaviors that they afford. This mapping can lead to the creation of a building or site-level generalized health score, providing health applications with a wealth of additional context to inform future personal informatics systems. This is the first step in our larger pursuit of the design of situated informatics systems that utilize personally generated, multi-modal data along with situated information about the built environment. Together, these data can be leveraged to identify health affordances of the environment, encourage healthy behavior, and promote wellbeing.


Utilizing Multi-Modal Personal Health Tracking and Health Affordances of the Built Environment. Clayton Feustel, Lauren Wilcox. Proc. WISH 2017 at the American Medical Informatics Association (AMIA) Annual Symposium. Washington, DC. Nov 2017    


an image of custom wearable sensors including a 9 degree-of-freedom inertial measurement unit.

Encouraging Healthy Standing Behavior

According to sedentary behavior research, most of us sit too much. But how much do we actually sit, and how much do we stand? What metrics should we really aim for in encouraging healthy standing? Through reaching out to physical therapists and health behavior experts, we uncovered four metrics that are important to track and surface to users. On the market, there’s a handful of devices and apps that attempt to track standing and sitting: they all fall short.

We prototyped a device that tracks when users sit and stand and connects to an iPhone via Bluetooth. We then applied results of our research with sedentary behavior experts, combining it with our device, to build a system that accurately tracks sitting and standing and intelligently presents this data to users. We created one on-boarding flow and two end-of-day reflective views after doing contextual inquiries and an Amazon review analysis. We iteratively revised our designs through rounds of experts reviews, before presenting them to users in a usability study.

This project represents Alex Ryan's MS-HCI project, and includes Matt Hong and Lauren Wilcox.


a screenshot of a slide from a presentation on our self-tracking study, with a link to the full presentation.

Self-tracking Mental Wellness

Self-tracking has been shown to play an important role in managing physical health, but we do not yet have a comprehensive understanding of the role of self-tracking in mental wellness contexts. Focusing on stress management, we examined the experiences and challenges of those who actually self-track to achieve mental wellness goals, through a survey with 297 students.

We complemented student perspectives with findings from a study with 14 student health professionals, from two universities, who participated in a qualitative study examining the role of self-tracking for student mental health and wellness. Our paper discusses ways that self-tracking can enable improved understanding of student stress and approaches to stress management and identifies situations in which self-tracking is not useful as a strategy of management.

Self-tracking for Mental Wellness: Understanding Expert Perspectives and Student Experiences. Christina Kelley, Bongshin Lee, Lauren Wilcox. Proc. ACM CHI ’17, The 2017 annual conf on Human Factors in Computing. Denver, CO. May 2017     [Presentation]


view of geospatial location data collected by participants in the Campus Life study.

Quantified Campus / CampusLife

Together with Dartmouth University, Carnegie Mellon University and Cornell University, we at Georgia Tech are interested in extending the seminal work of StudentLife, started by Dartmouth’s Andrew Campbell a few years ago. Campbell sought to determine if mental health and academic performance could be correlated, or even predicted, through a student’s digital footprint. We are proposing the Quantified Campus project as a logical extension, which aims to collect data from relevant subsets of a campus community through their interactions with mobile and wearable technology, social media and the environment itself using an Internet of Things instrumentation.

What drives this project is both a human goal of understanding wellness for young adults as well as how one can perform such experimentation and address the significant security and privacy challenges. We invite everyone from the Georgia Tech community to join a conversation with the lead researchers from four universities to help influence the directions of this nascent effort.

Experiences with Ecological Momentary Assessment Tools to Study Emotional Well-being. Larry Chan, Christina Kelley, Vedant Das Swain, Kaya De Barbaro, Gregory D. Abowd, Lauren Wilcox. Submitted for publication, 2017.

a view of a selection boxes shown to participants in a study investigating how they search and interpret data presentations of the behaviors and moods of other people like them.

People Like Me

We can now collect multiple streams of heterogenous data relating to our behavior, physiology and mood through off-the-shelf consumer devices. But that data is currently reflected back to users in limited ways. We are interested in how people reflect on these personal data with respect to those of others.

Cohort (versus population) models are used in numerous medical research applications, but cohort models are often based on limited characteristics that are invisible to the end user. We are exploring ways of visualizing and presenting cohort characteristics, to enable individuals to interact with and reflect on their personal data--contextualized by others' data who are "like them" in a variety of ways.

Researchers on this project include Clayton Feustel, Shyamak Aggarwal, Bongshin Lee (Microsoft Research) and Lauren Wilcox.

HEALTH INFORMATION SEARCH TOOLS


an image of Professor Wilcox's research prototype containing medication information search tools.

Remedy: Patient-Centered Medication Information Search

Recent research focused on online health information seeking highlights a heavy reliance on general-purpose search engines. We explore how such tools can support non-expert, patient-centered health information search.

We applied text-processing techniques and probabilistic generative topic modeling approaches to a large collection of web-based resources and complemented these with interactive user interface tools. Our search tools were designed to enable human strategies for searching and judging information to complement probabilistic, computational approaches. We then evaluated our tools in a tablet-based study probe, called Remedy. Post-operative cardiothoracic surgery patients and their visiting family members used Remedy to find information about their hospital medications and were interviewed before and after their use. Domain experts conducted similar search tasks and provided qualitative feedback on their preferences and recommendations for designing these tools.

Findings from our study suggest the importance of four valuation principles underlying our tools: credibility, readability, consumer perspective, and topical relevance.

Patient-Centered Tools Medication Information Search. Lauren Wilcox, Steven Feiner, Tran H. Tran, David Vawdrey. Proc. PervasiveHealth, May 2014, Oldenburg, Germany. ICST, 49-56.    [Presentation]


PATIENT-FRIENDLY ELECTRONIC HEALTH RECORDS


two screenshots from a prototype application designed to help patiens better understand their radiology reports. One image shows graphical explanations and definitions that the user can launch, right from the report text, to query what the report language means. The other shows an excerpt of a visual and textual summary of major changes in the patient's report over time.

Interactive, Patient-Centered Radiology Reports

We designed prototype tools supporting abstracted, visual explanations of anatomical concepts and collaborative review and communication of diagnostic imaging data through interactive user interfaces. Our paper reports on a pilot study of the new interactive reporting tools with oncology patients (n=14), their parents (n=14) and their clinicians (n=5), to gauge acceptance of the prototype in the clinical oncology setting and identify needed improvements to our design.

Supporting Families in Reviewing and Communicating about Radiology Imaging Studies. Matthew Hong, Clayton Feustel, Meeshu Agnihotri, Max Silverman, Stephen Simoneaux, Lauren Wilcox. Proc. ACM CHI ’17, The 2017 annual conf on Human Factors in Computing. Denver, CO. May 2017


a series of images showing screenshots of prototypes designed by Professor Wilcox, to enable patients to interact with their electronic health record data, including inpatient medication schedules, views of the members of the patient's care team and notetaking tools.

Patient Engagement in Hospital Care

Wilcox has done extensive work on designing patient-centered information displays, characterizing linguisic features of patient-friendly explanations of medical events, and deploying custom inpatient technology for cardiothoracic surgery patients. Selected publications related to these efforts include:

Interactive Tools For Inpatient Medication Tracking: A Multi-Phase Study With Cardiothoracic Surgery Patients. Lauren Wilcox, Janet Woollen, Jennifer Prey, Susan Restaino, Suzanne Bakken, Steven Feiner, Alexander Sackheim, David Vawdrey. J Am Med Inform Assoc (JAMIA) 2016. DOI:10.1093/jamia/ocv160

Patient Experiences Using an Inpatient Personal Health Record. Janet Woollen, Jennifer Prey,Lauren Wilcox, Alexander Sackheim, Susan Restaino, S T Raza, Suzanne Bakken, Steven Feiner, George Hripcsak, David Vawdrey. Applied Clinical Informatics (ACI) 2016; 7(2): 446-460. DOI:10.4338/ACI-2015-10-RA-0130

Patient Engagement in the Inpatient Setting: A Systematic Review. Jennifer Prey, Janet Woollen, Lauren Wilcox, Alexander Sackheim, George Hripcsak, Suzanne Bakken, Susan Restaino, Steven Feiner, David Vawdrey. J Am Med Inform Assoc (JAMIA) 2014; Jul-Aug;21(4):742-50. DOI: 10.1136/amiajnl-2013-002141

User Interfaces for Patient-Centered Communication of Health Status and Care Progress.. Wilcox-Patterson, Lauren. 2013. Available from ProQuest Dissertations & Theses A&I: Science & Technology (1465384632).

Designing Inpatient Technology to Meet the Medication Information Needs of Cardiology Patients. Lauren Wilcox, Steven Feiner, Andy Liu, Sarah Collins, Susan Restaino, David Vawdrey. Proc. ACM IHI 2012. Jan. 2012, Miami, FL, 831-836.

A Tablet Computer Application for Patients to Participate in Their Hospital Care. David Vawdrey, Lauren Wilcox, Sarah Collins, Suzanne Bakken, Steven Feiner, Aurelia Boyer, Susan Restaino. Proc. AMIA 2011, Washington, DC, 1428-1435.

Characterizing Patient-Friendly "Micro-Explanations" of Medical Events. Lauren Wilcox, Dan Morris, Desney Tan, Justin Gatewood, Eric Horvitz. Proc. ACM CHI '11, the 2011 annual conference on Human factors in computing systems, Vancouver, BC, 29-32.

Physician Attitudes about Patient-facing Information Displays at an Urban Emergency Department. Lauren Wilcox, Justin Gatewood, Dan Morris, Desney Tan, Steven Feiner, and Eric Horvitz. Proc. AMIA 2010, Washington, DC, 887-891.

Designing Patient-Centric Information Displays for Hospitals. Lauren Wilcox, Dan Morris, Desney Tan, Justin Gatewood. Proc. ACM CHI '10, the 28th international conference on Human factors in computing systems, Atlanta, GA, 2123-2132.